This page is for information related to Nilotinib (Tasigna) formerly called AMN107, one of the Clinical Trial Drugs. Feel free to add your own experiences with the drug in the comments section or any other links to useful resources.
For information from the manufacturer link here.
Molecular Targets: PDGFR, KIT (also Bcr-Abl which is not relevant to GIST)
GIST Support International website page: Link here
Q & A
21 Jan 2008
Subject: Updates about the AMN107 trial
(AMN107, Nilotinib, Tasigna) = three names for the same drug (the laboratory name, the generic name, the brandname)
I spoke to Leslie Fields and Dennis Williams from Novartis on Friday who provided for us some updates about the phase III AMN107 trial. Leslie is the patient advocacy contact person--always cheerful and friendly, and Dennis is a physician in their scientific division. It was an enjoyable phone call, and I thank them for their time and helpfulness.
1) The Compassionate Access program for AMN107 is now closed in the US due to FDA guidelines that apply once an investigational drug is publicly available on the market. AMN107 (Nilotinib, Tasigna) has gained FDA approval for chronic myeloid leukemia. The compassionate access program was to help patients gain access to AMN107 who were not able to enter the trial at a time when there were no prescription avenues to get the drug. If you are a GIST patients wanting to try AMN107 you should: a) try to enter the phase III clinical trial, b) try to obtain it by prescription as your insurance might now cover it as an off-label indication, c) if you are unable to get the drug through a trial or by your insurance coverage, then contact the Novartis Patient Assistance Program for Tasigna, and they will help you get the drug.
2) The phase III AMN107 trial is designed to enroll 237 patients, mostly in europe. It is a registration trial with the goal of collecting data to meet the FDA requirements to license the drug for the prescription market for GIST. About 25 us pts have been enrolled at 11 trial sites are in the USA. To qualify for this trial a patient must have tried both Gleevec and Sutent. ((I am unclear about which dosages) Novartis estimates that the trial may be finished with patient accrual sometime this spring...perhaps March or April...but these are estimates. http://clinicaltrials.gov/ct2/show/NCT00471328?term=amn107&recr=Open&rank=5
3) More trials for AMN107 are under consideration. A US based trial at four sites (sponsored by the investigational sites and not by Novartis) is in planning for those patients who have tried other drugs besides Gleevec and Sutent. The 4 sites would be chosen in part with geographical location in mind to help patients with their travel.
3) Further into the future, a trial of Tasigna as a second line of defense for patients who have had only Gleevec.
20 october, 2007
AMN107 is a derivative of Gleevec. Half of the AMN107 molecule ("the working end"--the engine) is the same as Gleevec. The other half of AMN107 molecule (the trunk and tail lights) is completely different than Gleevec.
IT was learned later that Gleevec itself has some unfavorable molecular shapes that are not optimal for binding to the protein--the tail end of the Gleevec molecule is like the big ole bulky tail light fins like on a 1960's Caddy, with an oversized chrome bumper too--trailer hitch included. So they redesigned the trunk and tail lights of GLeevec and came up with a more aerodynamic streamlined model (or a better protein fit)--AMN 107.
AMN107 can "forgive" some secondary mutations that lead to Gleevec resistance--mutations in exon 17 of KIT for example...exon 17 of KIT is where Gleevec where the trunk and tail lights of Gleevec are crowded unfavorably with the protein.
Still, there are some parts of GLeevec and AMN107 that are exactly the same..."the working end" (the engine--V8 engine--high octane leaded fuel--) which docks near the "P Loop" and other important areas.
There is something called the "gatekeeper mutation" T670I, which is where the protein forms a critical interaction to the "engine" of the GLeevec molecule as well as the engine of the AMN107 molecule (which are two of the same engines). Pts who have the gatekeeper mutation would be less likely to benefit from either Gleevec or AMN107--as the gatekeeper interacts with the same "engine".
If you want to see a picture of the gatekeeper mutation in action, then check out this article for the binding of Gleevec to a protein called ABL--Look at the picture on page 3. http://www.biochem.mpg.de/en/rd/ullrich/publications/002-04.pdf ABL has the analogous gatekeeper mutation the T670I mutation in KIT...the number for ABL is T315I. Look on page and you can see how the protein residue marked 315 closely hugs Gleevec...and you can get a sense how a mutation at 315 may interfere with Gleevec binding.
THen some patients have secondary Gleevec resistance causing mutations that are in the area of the trunk and tail lights of Gleevec--exon 17 of KIT. AMN107 with its streamlined shape (the fins on the tail lights and the heavy chrome bumper has been redesigned to something sleeker) is not affeced by some of the exon 17 mutations that disrupt Gleevec binding... So some pts with secondary mutations in exon 17 benefit from a switch to AMN107.
ALso AMN107 achieves a much higher cellular concentration that Gleevec, and so for this reason, it may work better against wild type KIT and might we speculate better for exon 9 KIT, where there is a "functional resistance" that is perhaps caused by local elevations in the concentration of KIT's growth factor--SCF...More AMN107 in the cell means more horsepower to "block that KIT" (KIT...KICK...it is college football season...)
AMN107, in theory, might be a better first line of defense drug for GIST than GLeevec itself...I would anticipate a trial at some point in the future that does a head-on comparison against Gleevec as first line of defense, once AMN107 makes it to market for third line of defense (pts who no longer receive benefit from both Gleevec or Sutent). Someday the Gleevec story might be like the penicillin story..each drug was one the greatest breakthrough drugs of all time, in the history books, but eventually becomes replaced by second generation agents as the first choice..perhaps by AMN107.
Sutent and Sorafenib are completely different than the Gleevec molecule. They intereact with KIT protien in a different way. Both Sutent and Sorafenib can block the gatekeeper mutation T670I. Yet, they may be sensitive to secondary mutations that Gleevec (or AMN107) can block. For this reason, combinations of kinase inhibitors might be important to block a wider range of mutations. This is the same lesson as the field of HIV treatments, where simultaneously administered combinations of anti-HIV drugs were much more effective than sequential delivery of single agent drugs. http://clincancerres.aacrjournals.org/cgi/content/abstract/13/16/4874?ck=nck
5, April 2007
Q: What is Super Gleevec? Why is it different or the same? If it were radically different, it could be called anything. How does relate to Stutent or some other medications?
A #1: Super Gleevec has an improved molecular structure to bind into the target proteins over the original imatinib molecule. The original imatinib (Gleevec) molecule was developed in the era of the early 1990's when not much was known about protien kinases.
Imatinib is a great drug--and has saved the lives of many. Nevertheless, once more data was available (in particular X Ray crystal structures at the atomic level showing how imatinib fit inside the target protein) it became clear there were some unfavorable aspects regarding the shape of the imatinib molecule. Some parts of imatinib were bulky and were bumping into the protein causing an unfavorable interaction. Thus, the idea to modify some of the structure of imatinib while leaving other parts of the imatinib structure the same. AMN107 (Nilotinib, Tasigna) has parts of its molecular structure that are the same as imatinib's. Other parts are totally different. The result is a drug that might bind better to some of the mutants of KIT that do not bind imatinib as well. Also AMN107 achieves a higher cellular concentration of drug than does imatinib.
I do not know why this is the case but think (but am not positive) that the AMN107 trial is planned as a third line of defense, for people who have tried two other therapies.
Answer #2: A Phase II trial for AMN107 (nilotinib or Tasigna) against GIST is cheduled to begin soon and not much information is available about it from the Phase I trial, we really do not know how it will work out against GIST.
You may be able to get nilotinib on a compassionate use basis outside of the trial by contacting Novartis.
Comments from Trial Participants
July 04, 2007
First posting- Dave B
Dr Margaret Von Mehren at Fox Chase Cancer Center is my oncologist. She suggested that I contact Dr. David D'Adamo at MSKCC. I called his office Monday and am waiting for a reply.
I'm participating in a stage 3 trial of Nilotinib at Fox Chase. There has been significant growth of the liver metasteses (%18-%20) during the first 6 months of the trial and PET scan detection of new starter sites in my lungs and a suspect site on my heart.
I get headaches a few hours after every dose of Nilotinib that may or may not be a reaction to the drug. A MRI and ECG are scheduled to see if the headaches are related to tumour growth or something else and to check the heart spot.
I'll drop out of the Nilotinib study as soon as I get a good alternative. I'm hoping that the Sorafenib mechanism is different enough from the Gleevec-Sutent-Nilotinib mechanism that I'll see better results.
July 19, 2007
The Nilotinib hasn't worked for me. I spoke with Dr. D'Amado at Sloan Kettering about the Sorafenib but decided against it. It's too similar to the other blockers that didn't work for me. I'm going to try flavopiridol chemotherapy, also at Sloan Kettering.
Apoptosis appeals to me at this point!
Dave's History: Diagnosis was 4 1/2 years ago now. There have been two major surgeries, two RF ablations, Gleevec, Sutent, and a Nilotinib trial. Nilotinib hasn't worked so I'm trying to hook up with the Sorafenib trial at Sloan-Kettering.
19 Jul 2007 Subject: Re: Liver surgery: yes or not?
I had two surgeries. The first was to remove the big initial tumor that was sqeezing and actually grew into my large intestine. There was a 6" section of intestine removed with the tumor. The cut for that one was vertical- from my sternum to about 3" below the navel.
There were multiple sites on my liver, from the initial diagnosis, that stayed small for about a year while I took Gleevec.
The second surgery was on my liver. A single tumor grew pretty quickly after a year on Gleevec and we (oncologist, surgeon, and me) decided to remove it. They also took my gall bladder since I was experiencing gall bladder attacks. The cut for that one was from just under my rib cage on the right side to just under the rib cage under my left breast.
The liver surgery scar was much more difficult to deal with. The muscles above and below the scar seemed to be working independently for a while and it took a good three months before I could "feel" the muscle and skin below the scar.
There were also two radio frequency ablation procedures in the two years after the liver surgery that burnt up 5 or 6 small but growing tumors. I wouldn't get that procedure again. I felt like they were just doing it because it was a cool new procedure. It didn't stop anything from growing and, in my unprofessional laymans opinion, simply started up the smaller tumors that weren't growing.
Would I recommend liver surgery? Tough question. Mine was based largely on the rapid growth of a single tumor. That's much different than your fathers situation where the sites are stable. We never talked surgery when the sites weren't growing. I just got CAT scans every three months to keep an eye on them.
I do believe that both big surgeries saved and prolonged my life. They certainly improved my overall health and gave the various medications time to work on the smaller sites (Gleevec, then Sutent, then a trial on Nilotinib). I had lot of faith in the oncologist and the surgeon because both of them laid out all the risks ahead of time and left the final decision in my hands.
I hope this helps
Dave (Phila. PA. USA)
20 Aug 2007
I'm on the last few days of the stage 2 clinical trial of Nilotinib at Fox Chase Cancer Center. The CAT/PET scans show that it hasn't worked for me but there are people from the stage 1 trial still taking it a year later with good results. I hope it works for you.
August 25, 2007
I'm starting a stage 1 clinical trial of Doxyrubicin & Flavopiridol at Sloan-Kettering Thursday.
I don't know anything about exon numbers.
Good luck, Dave
20 Oct 2007
Subject: Re: Nilotinib AMN-107 Clinical Trial
I participated in the Nilotinib stage II trial at Fox Chase. The trial qualifier was Gleevec and Sutent failure. It didn't work for me but the folks running the trial told me that there are people from the stage I trial over a year ago that are still taking it and doing very well.
There were sinus headaches for about a month while I was taking it- always about one hour after the dose and lasting 1/2 hour to 45 minutes but they eventually stopped.
The dosage was two 200 mg tablets twice a day- a total of 800 mg a day. They were spaced an hour before and two hours after eating so you have to develop a workable schedule. Mine was 5:00 AM, 5:00 PM.
Hope this helps
Dave switched to Nexavar - see Nexavar page
28 Nov 2007 Subject: Re: question on sutent and AMN 107
The folks at Fox Chase did the stage 1 trial and are doing the stage 2 trial for Nilotinib. I participated in the stage 2 trial. It didn't work for me but there are folks from the stage 1 trial who are still taking it successfully (over a year) and some people on the stage 2 trial are doing well.
26 Feb 2008
Subject: Headaches on AMN107
I got "sinus" headaches during the first 3 months of a 6 month AMN107 trial. I even got a MRI to make sure it wasn't tumors.
July 07, 2007
My dad, Harold G, has been on compassionate use AMN107 for about 9 weeks and after a scan 2 weeks into it, his livers levels went from poor to normal range. He was scanned this past week and there is no growth, the drug is holding though no shrinkage. He is still 120 lbs and constantly exhausted no matter what we do.
When working through the process to receive the drug, it's good to know who who has the ball at all points in the process. We had found our request got hung up for 2 weeks because our hospital sent paperwork back to Novartis with a change to the protocol so it took time to venture into Novartis' legal dept. Then it has to come back to your hospital review board that usually meets once a month. So we got the hospital to see who could call a phone mtg or whatever to avoid waiting until the next meeting. Following up with the steps did help us- the process took 6 weeks. Getting the initial info to Norvatis from your oncologist seemed to be easy, latest scans, proof of failing Gleevec, then Sutent, etc.
Harold G - he was diagnosed Oct 2001, Gleevec 4 yrs, Sutent 1 yr.
23 Aug 2007
I am hoping someone on AMN107 can help us. My father has been on compassionate use of this drug for about 4 months. It is not shrinking the cancer - but it is holding it for which we are very grateful. The problem is he is more and more tired, unable to do anything. He walks to the mailbox and that's it. He spends the day in the recliner and I am wondering if anyone has any ideas on how to strengthen him - we are doing protein and an appetite aid since he is 120 lbs. I desperately want to give him a better quality of life - he was never a sit around guy (former carpenter) and this is awful. His eyes burn so he can no longer read or watch TV more than a few minutes. He naps frequently and only sleeps intermittently at night. Two different sleep aids he has taken haven't helped. What is everyone else on this experiencing and any ideas?
Thanks Carrie Daughter of Harold G
Harold switched to Nexavar - see Nexavar page
25 Sep 2007 Subject: Starting Amn107
I just wanted to let everybody know I finally got to start the Compasionate use Amn107, Just started this morning so it's to early to report on any side affects. Im a little weak still from surgery but healing up just fine. I don't know whats around the corner for me but I can say with great joy, It's good to have some hope once again as it has been quite a battle to get my hands on these little evasive yellow pills.
Feeling very blessed!
Donnie Ray stopped Nilotinib and started Sorafenib (Nexavar) - see Nexavar page
9 Nov 2007
Subject: Tasigna (Amn107)
Today I picked up the prescription of Tasigna (AMN107) for my husband, Gerald. He will begin taking it tomorrow. It came packaged very nicely - in a box containing four individual packets, one for each week. In each packet the capsules were laid out and marked for each day of the week. All this for $5655.70. I had really expected to be more costly. This is less than Gleevec. I don't understand at all how the prices of meds are figured. I have two hopes: first that it will be effective and second that by next month our insurance will cover the charges. If the insurance will not cover it, I will have to back to trying to get on a compassionate basis. Hate that thought.
Gerald is barely eating and has lost lots of weight and is a bag of bones. He is vomiting "gucky, phegmey stuff" and bile which is gross. He is bedridden and we now have hospice services which are great. I am really pinning my hopes on this new drug and praying it will be effective. We are greatful to be able to have it at any price.
Deanne wife of Gerald, GIST pt since 2000
15 Nov 2007
It is with deep sadness that I report Gerald's death from GIST early this morning. His tender body was just fighting too much disease to survive. I had faith in Tasigna (AMN107) but we received too late for it to have any effect. The past few weeks have been difficult for him but now he is at peace.
During the past month we celebrated his 70th birthday and our 45th wedding anniversary. We were blessed with a wonderful, happy life together.
I know I will miss him deeply but I will be fine and not allow this cancer to destroy me also.
I appreciate wonderful support from this list and the great knowledge that is shared. Thanks to all.
Deanne Snodgrass wife of Gerald, GIST pt since may 2000
29 Jan 2008
Subject: AMN-107/Sutent Side Effects
It has been some time since I have posted but do go through the posts every day.
I thought I would update you on what Tony has been through and where he is heading in this GIST journey.
As told previously he was originally on Gleevec which he became intolerant to and then on to Sutent. This too did not stabilized his liver lesions. He went from 50mg Sutent 4 weeks on, 2 weeks off to 37.5mg daily on a continuous basis. His lesions continued to grow slowly but over a period of time he had to have a liver resection due to a 9cm lesion which grew too close to the vena cava. So, in June 2006 he had his liver resection. He is still taking 37.5 mg Sutent and has had new lesions develop in his liver since the surgery. Overall, he has been on Sutent for over 3 years and his lesions have been growing very slowly.
During the month of January he was accepted in the AMN-107 Clinical Trial at Moffitt Cancer Center. Unfortunately his randomization was not to receive the Nilotinib but to remain on the Sutent. Although this was not what we were hoping for it, at least, keeps the door open to crossover and receive the Nilotinib if his tumors continue to grow.
Would like to hear from those taking the Nilotinib, what they are experiencing and whether or not they are seeing any results. You are welcome to email directly or through GSI posts.
For those who are taking sutent and are wondering about the side effects of long term use, I will list Tony's side effects.
Elevated blood pressure (controlled by medication), taste alteration (changes constantly) sometimes spicy food helps and sometimes it doesn't. He is constantly trying different foods and/or seasonings to help alter the bitter taste he gets from the meds. Diarrhea and/or loose stools (caused by meds or by diet). Having a colostomy does not help the situation. He alters his diet by eating foods that have a binding effect (bananas, potatoes, pasta, yogurt). Not all digestive systems are the same. One has to try what works best for them.
Additionally, he has some yellowing of his skin tone, his hair has turned completely grey (including eyebrows and eyelashes). We now call him the "Silver Fox". Had some mouth irritation in the beginning but that has faded.
So, all in all, the side effects come and go and one has to deal with them. Remember, however, everyone's system will react differently based on your overall physical well being. Good luck to all.
Love and Peace, Kay - Wife of Tony P
24 Feb 2008
Subject: Acceptance Into Clinical Trial
Life has been a whirlwind of late, as with most of you, due to getting accepted into the AMN-107 Clinical Trial.
As previously told, Tony has been on Gleevec and Sutent, had a liver resection and still the lesions grow in his liver. They have started growing more rapidly of late and he had applied to enter the AMN-107 Trial.
Finally, after months of paperwork and red tape he signed the final protocol papers and received his first dose of Nilotinib on Wednesday 2/20/08 at Moffitt Cancer Center. We saw Dr. Garrett for the last time since our next appointment will be March 21st. which will be after he leaves on March 14th. We will be seeing Dr. Williams who will be taking over the AMN-107 trial.
Of course we are interested to find out what side-effects others are having. Is there anyone from this group that is currently taking or has taken this medication? We would appreciate receiving any information you would be willing to share.
We will keep this group up-to-date on how Tony is managing this medication as well as how it is working. We are at least hoping to get stabilization but shrinkage would be gladly accepted.
Your thoughts and prayers are always needed.
Love and Peace, Kay -Wife of Tony P
5 Mar 2008
Subject: Side Effects - AMN-107
As you know Tony in in the AMN-107 Clinical Trial. He has been on the medication for about 2 weeks now and has already started with some side effects.
1. Headache - On & Off, When there is no headache he still has a foggy feeling in his head. 2. Bad Taste - Extreme bad taste which only diminishes when he is eating but returns soon thereafter. 3. Edema - His ankles started swelling a few days ago. Since he also has neuropathy it makes his walking more difficult and slower. 4. Fatigue - He has been getting tired more often than when he was on Sutent or Gleevec.
Hopefully the side effects will diminish when his system gets accustomed to the medication and works.
If anyone has or has had the Bad Taste side effect and found something to help alleviate it please let me know.
Will keep you updated.
Love and Peace, Kay - Wife of Tony P
26 Mar 2008
My husband Tony was on Sutent for over 2 years and the only side effects he had was altered taste and elevated blood pressure. Everyone's body seems to accept the medication differently.
He had severe side effects from Nilotinib - AMN-107. He is now going back on Sutent.
Love and Peace, Kay
26 Mar 2008
Subject: Re: (Kay/Tony AMN107)
Tony is no longer in the AMN-107 Trial. His side effects were headache, edema, bitter slimy bad taste and blood level variations. His hemoglobin went down to 8.9 and had to have an injection of Aranesp. He also had progression of his tumors over the Resist limit.
Good luck to Charlie, hope it works for him
26 Mar 2008
Subject: Left AMN-107 Trial
Just wanted to give you an update on my AMN-107 experiences. Started the trial medication on February 20th and had tumor progression based on CT taken March 20th.
There was sufficient progression for me to be ousted from trial and have been put back on Sutent, 25mg. alternately with 50mg. every other day. The side effects of Nilotinib was significantly worse than with the Sutent. So much so that my hemoglobin level was down to 8.9 and received a shot of Aranesp.
So, here we go again on the roller coaster. We are looking to get another opinion from one of the experts. I believe I read some time ago that Dr. Demetri would look at a scan if sent to him via US mail.
Beverly, was that you who posted that information? If so could you let me know what the procedure is. If not whoever posted that would you please contact me. Anyone can contact me directly at BrotherATP@msn.com.
28 Mar 2008
Subject: Re: Tony - Nilotinib - going back on Sutent-To Minnie
Tony went back on Sutent because there is nothing else for him right now. If he doesn't take anything then his lesions will grow at a faster pace. Gleevec is out, he was on it for 14 months and then was progressing rapidly. We are currently looking for a new bullet to stop these lesions from growing and maybe even shrink them.
It's all in God's hands, he will walk with us to the right path.
Love and Peace, Kay - Wife of Tony P
4 Apr 2008
Subject: Re: Help - Getting into a New Trial
I have been in contact with someone at DF and we are going to have a telephone conference today. I will keep Dr. Wagner's telephone number available.
Love and Peace, Kay
4 Apr 2008
Subject: Re: Help - Getting into a New Trial-To Minnie
Thanks, I already have a copy of the Reach Application ready for our next doctors visit in two weeks just in case we are not able to do something in a trial.
Hope and pray that Nilotinib works for you. As you say, "It's all in God's Hands".
Love and Peace, Kay
4 Apr 2008
Subject: New Trials
Wanted to let everyone know that if you are in the AMN-107 trial you will not be eligible for XL820.
Just found out the Tony is ineligible because of the AMN-107. Well, off to see if we can get Sorafenib. Hopefully the doctor won't give us any flack. If he does, we will find another doctor.
31 Jan 2008
Subject: listmate needs advice on Tasigna / nilotinib / AMN107
Our listmate Doris Talley wrote: I will be getting Tasigna as off label on Friday. I would like to hear from someone who is now taking this drug as to the side effects and what their experiences are with it. I was going to go to Sarah Cannon in Nashville to see if I would be eligible for any to their clinical trials, but had to cancel because I am not strong enough to go.
If you can tell Doris about your experience on nilotinib / AMN107 / Tasigna, please e-mail her direct at firstname.lastname@example.org and also copy the list so others can benefit from what you say. THANKS! Julie
24 Feb 2008
My mom, Doris, is also on AMN-107, but not through a trial. Maybe my dad will see this and can respond better about the side effects. As for our experience, however, I know it can't be as bad as sutent side effects...
Let us know how Tony fares on it!
February 28, 2008
Listmates, Doris's daughter Suzanne asked that I forward to the list her message about Doris' passing yesterday. Those of you who met Doris and husband Wayne at the NC area get-togethers the last 2 years will remember her well. I am sorry to be the bearer of this sad news. Julie
From: Suzanne Hawkins
We lost her this morning. I want to thank you and all of the others on the list for all of the help, hope, and inspiration you gave her and us. We appreciate it and will never forget.
6 Feb 2008
Two years ago we found after checking Walmart, Walgrens and Target that Target was the cheapest place for the one month of Gleevec that Charlie needed. That has probably changed in two years. Today Charlie starts AMN107 so we are sure hoping it will work long enough to get his foot healed in order to go back on Sutent. Going to the Dr two and three days a week for the last 7 months is really starting to wear on both of us.
25 Feb 2008
My husband Charlie also started AMN107 about three weeks ago but also not through a clinical trial. Gleevec had failed but Sutent even at a low does was working but the side effects from Sutent caused painful open ulcers on his foot and leg until he was in danger of losing his leg. He has been off the Sutent since early Jan and the ulcers are really showing improvement abe= t slowly. So far on the 800 mg AMN107 the only problem he is having is some diaharria and a slight rash. Now we hope the drug is working.
25 Feb 2008
Minnie. I totally forgot that Charlie has been complaining about headaches also since he started the AMN107. Says they only last for an hour or so and get better. Do yours last all day? He also had an EKG before starting the drug and then about 10 days into taking it. So far ok. Hope you can get releif from your pain with the new drug.
26 Feb 2008
Charlie is having blood work every two weeks so goes back this Friday. As of two weeks ago the Dr was thinking a CT scan at 6 to 8 weeks so that would make it mid March to late March. How soon will you have another one? He does seem more tired but his energy has never been too high. When not on Sutent his blood pressure is much lower like 100/60 which I think causes some of the tiredness. The one other thing that I have notice is that his personality seems to have changed a little as seems much shorter on patience and as very touchy about the strangest things. Not sure how this could be attributed to the AMN107 but who knows. I do remember seeing on here fairly recently another member who had been on Amn107 and had sinus headaches especial= ly for an hour or so after taking the pills. His rash seems to stay about the same and is only behind his ears the the back of his neck but his skin is more flushed. Here's hoping for the best for all of us on AMN107.
6 Mar 2008
Subject: Re: Side Effects - AMN-107
Charlie has been on AMN107 now for 3 weeks starting his 4th week. He too has the headaches that come and go and a little water retention but luckily so far has not complained about any bad taste. Fatigue is common for him on any of the medications he has had. I do not see bad taste is listed as one of the common side effects. Good luck to you both on this drug. I guess I have been a little concerned if the drug is working as his side effects have been minimal compared to Sutent.
7 Mar 2008
Subject: Re: Side Effects - AMN-107
Thanks for asking. The ulcers on the left side are about 90% healed. The right side seems to be progressing at a much slower rate. Charlie did go back on a wound vac and the Dr thinks this will really speed it along. If the AMN107 is not working he will have to go back to Sutent and deal with the open sores as well as possible. The ulcers also disqualify him from some other trials. The wound specialist did say 6 months to heal. Sure hope this new drug will give him enough stable time to allow the ulcers to finish healing. He had a bad time all around on Sutent but even at a low dose it was working but the problems it created were so bad. Of course if AMN107 is like Sutent he did not have any side effects the first two cycles but seem to develop them after the Sutent built up in his system. Hope Tony's taste improves.
26 Mar 2008
Subject: Re: (Kay/Tony AMN107)
Sorry to hear that Tony was having so much trouble with side effects from AMN107. May I ask what kind of side effects he was experiencing? I was hoping to hear that he was doing well on the drug. So far Charlie has few side effects from Amn107 and will have a scan tomorrow but no results until next week as Dr is on vacation. We are hoping he won't have to go back on Sutent as his side effects from Sutent were terrible even though it was still working for him. Good luck to Tony with his return to Sutent. Thanks for your imput.
3 Apr 2008
Subject: Another AMN 107 failure
Sorry to have to report that Charlie has gotten no benefit from AMN107. The tumors have almost doubled in size and number. That certainly dashed our hopes for an answer to our prayers. He will go back on Sutent and will probably end up with losing his leg but it's that or his life. One side of his foot is healed but today he is having a appletgraft (skin graft) put on the other side. The wound Dr will probably refuse to put it on when we tell him Charlie is going back on Sutent as it will never heal. We will start with 25mg 4 weeks on and two weeks off and I guess hope for the best. Most of the trials out there will not accept him if he has open wounds anyway. Sure disappointing as we were hoping for better news.
17 Apr 2008
Subject: Re: Need info on AMN 107
Sorry you are having progression. My husband, Charlie, tried AMN107 for about 7 weeks in Feb and March. Unfortunatley he had major progression of the exsisting tumors and several small new ones so we know it was a failure for him. The only good thing was he had miminal side effects from the drug. Mostly slight headaches and skin flushing. We were very dissapointed in the lack of sucess but hope you have better luck if you try the drug. He has gone back to Sutent now but it causes him terrible side effects. Minnie had written in her Journal that AMN107 was working for her as it was the first time she has had a stable report in a while. So don't give up hope on the drug. Best wishes to you.
1 Aug 2008
Subject: Sutent - Charlie
Just a quick update on Charlie as I have not posted for quite awhile. After 2 months on AMN107 (which did not work at all) and substantial growth of his liver tumors Charlie tried 25mg of Sutent with two week break. CT 6 weeks later in June showed more growth. Due to the problem he has had with the leg ulcers Sutent use has been a real problem for him. During the 4 months on AMN107 and lower dose of Sutent one ulcer healed completely and the other almost. After much debate as to weather he should start Nexavar or a stronger dose of Sutent Charlie went on 37.5 mg of Sutent on a continuous basis for the past 6 weeks. The CT scan on Thurs show that the growth had stopped on the higher dose (good news) but now he is back to new and bigger foot ulcers starting up again. Feel like we are really on a merry go round. Guess it will have to come down to his life or losing his leg. Nexavar is made up of a lot of the properties that Sutent is and I doubt that the leg ulcers would improve on that drug either. Charlie has lost 15 pounds in the past three weeks as this time he really has a loss of appetite and Nausea with the Sutent that he never had before. We still have hope that somewhere things will get better. Thanks for listening.
Charlie started Nexavar September 2008 - see Nexavar page
FEBRUARY 16, 2008
Dear family and friends,
I’m sorry to bring bad news but I found out yesterday that there appears to have been some progression of the disease. The lesions in the dome, the mid portion and left lobe of the liver have increased in size and activity. There was again noted to be a focus of increased activity in the left side of the pelvis that continues to be undetermined but more than likely GIST. This means I will be moving on to the trial drug that comes in many names: Tasigna/Nilotinib/AMN107. To those folks who understand, this drug is a novel tyrosine kinase inhibitor targeting KIT, PDGFR, and Bcr-Abl and inhibiting the proliferation of both IM-sensitive and -resistant cells in vitro. How about that for sounding smart? Before some of you get too impressed, I just copied that line from the abstract. I can barely find my keys or remember what I need to do today.
This drug is supposed to be more potent but it doesn’t mean the side effects are more intense. I will need EKGs monthly because it can be pretty hard on the heart and the fact that I’m on methadone doesn’t help. Most frequent adverse events include skin toxicity, fatigue, myalgia, headache, abdominal pain, nausea, vomiting, diarrhea, constipation, hyperbilirubinemia and edema. Because I am overly sensitive to medication I will start with half the recommended dose so instead of 400 mg twice a day, I will only take 400 mg once a day. I’m not exactly sure how I will go up. I had a baseline EKG done yesterday, another one a week from when I start the drug and then monthly. I should have the drug and start on it by Tuesday or Wednesday this coming week. I don’t really expect anything different as far as side effects go. This is not much different from the side effects I’ve heard or experienced before.
I know this is not encouraging news but I have to tell you, God is so faithful and continues to bless. After getting the results I called the boys who are both in Vegas for a soccer tournament. I hate having to tell them bad news but I know God will always cover. But it’s so different knowing God will cover and then seeing Him cover. I called Dan first of course. He was silent and then said, it’s a bummer but we have to remember to take things a day at a time – and may I add a prayer at a time. He was more worried about how I am with the news than himself. That's Dan. I am so blessed. I really think he's a keeper. I told him to let Daniel know and then he called me a couple of minutes later and asked me to call Daniel. When I told Daniel the first thing he said was “Mom, God is still good.” How about that for God's grace and mercy!
Yes Daniel, God is still good!!!!
Till the next update…
In His grip,
1 Chronicles 16:34 O give thanks to the LORD, for He is good; for His loving kindness is everlasting.
25 Feb 2008
Subject: Re: Acceptance Into Clinical Trial
I just started on Nilotinib as well - exact same day that Tony started. How is Tony doing on it so far? As for me, I am okay - the side effects are manageable. I have a bit of a rash on my face and feel pretty tired but nothing I can't handle. Fatigue has become part of my life so I'm used to it. My pain has been increasing as of late but I don't think it's because of the Nilotinib. I had a bad cold and I think it's also from the tumors. My pain pump is on the lower right side of my abdomen or below my liver. I noticed that I feel pain when I turn the wrong way and the pain goes all the way to my back. I have it on both sides but the right more than the left when I turn the wrong way. My pain doctor cannot increase the dose of the meds in my pain pump because my blood pressure is low again. Sutent actually helped to increase my blood pressure but now that I'm off Sutent my blood pressure has gone down again. It was 85/57 when I saw him last Thursday so I have to stay on this current dose. One of the meds in my pain pump is a blood pressure medicine so we have to be extra careful when we increase the dose of the Clonidine.
I don't know how to describe or explain this symptom or where it is from - I have pain when I touch my forehead, right where my eyebrows are located to the sides (temples) and cheekbones and goes all the way down to the lower part of the bottom sockets of my eyes. It's not an intense kind of pain but I have to be careful when I touch those bony areas. The pain goes a lot deeper than the skin that's for sure. I'm sorry I can't describe it well. I'm hoping that if somebody is experiencing the same symptoms or knows anything about this, he/she can let me know.
Please keep us updated on how Tony is doing. Did he also get an EKG before he started Nilotinib and will get another one a week after taking Nilotinib and then monthly thereafter?
Thanks a bunch.
26 Feb 2008
Thanks for the info on AMN 107 and how Charlie is reacting to it. Yes, the headaches do not last all day long. They seem to come and go. I also have a rash on my face. It's not severe but it seems to have spread since it first started to show up around day 3 or 4. I am keeping a close eye on it. I think I will try to find a mild facial cleanser so as not to aggravate it even more.
The good news is the flu didn't come like I thought it would. I felt like I was coming down with the flu or last week but I guess I am just getting used to the medication. I still feel the pain around my face all the way to the jaws when I touch the areas but I'm not congested. I highly doubt this is a sinus infection but I will check into it. (Thanks Linda for sharing that thought).
I am due an EKG. I had one prior to starting and I'm supposed to have another one a week after I started so I will get one tomorrow. I am on day 7.
Is Charlie experiencing other side effects? I notice my pain has been increasing. It starts in the upper abdomen, radiates to the shoulders and goes to the back. I had my pain pump refilled last week but my pain doc did not want to increase the dose of the meds. My BP has gone down again since stopping Sutent. It was down to 85/57 or something like that last week. He didn't want to increase the dose and take the risk of my BP going down even more. One of the meds in the pump is a blood pressure medicine so it can cause my BP to nose dive. Mornings tend to be rough and getting out of bed is not easy. That's when my pain is most intense. It gets better as the day goes but I'm feeling more tired than usual and I think it's because the pain can be draining. I try not to nap although I get really sleepy as sleeping seems to make me feel worse. I feel more tired and wake up with a lot more pain. I hope I don't sound like I'm complaining. I am actually doing well. These side effects are very manageable so far compared to when I was on Gleevec or Sutent. I am not nauseous at all so I am so grateful for that. I'm just trying to find out if others taking this drug are experiencing similar symptoms.
Last question - how long will it be before Charlie gets a scan to find out if Nilotinib is working? I'm sorry this is long.
27 Feb 2008
I actually don't know when my next scan will be. I have an appointment to see my oncologist on March 14 and I will ask her then.
I don't know about patience and being overly sensitive to the strangest things. I have to say I have those moments and probably more if I ask my boys:). For me, frustration over what I can't do anymore can sometimes do that to me.
My rash started with small spots on my cheeks but has now spread to my whole face. It wasn't as itchy when it first showed up but it's starting to bother me a bit, every once in a while. I think I just have to pull my hair back so it doesn't touch my face.. I feel and look flushed most of the time. Sometimes my husband even thinks I have a fever.
Thank you so much for sharing Charlie's experience with Nilotinib. It helps a lot. Take care.
Blessings remain, Minnie
MARCH 10, 2008
Dear family and friends,
We saw Dr. Basche last Friday to discuss how I should proceed with Nilotinib. Because of issues with toxicity, I’ve had to take a break from the drug after being on it for a couple of weeks. I am on a one week break and will restart again today, Monday. I ask for your prayers as my pain has gotten pretty intense. My pain doctor is open to doing the celiac plexus block once again but we want to pray through this and make sure this is where God wants me to go. Please pray for wisdom, discernment and continued strength to persevere.
On a lighter note, our other son, Paul, has been home for a while. He arrived the beginning of February and will be with us until the end of March. As always, he is such a joy and a blessing to us. My sister-in-law and one of my very best friends in the world, Cora, has also been here with us the past couple of weeks but will be going home tomorrow. I wish she can stay much, much longer. She spent her time getting big projects done for me while allowing me to enjoy the other chores I like doing. She and Krissie even tag teamed on some of the projects. I’m going to miss her soooo much.
Dan and Daniel were gone again this past weekend as they wrapped up a study they started about a couple of months ago with other fathers and sons. It's called Passage to Manhood. I was initially hesitant to add another activity to Daniel’s already hectic schedule but thankfully as Dan prayed through it, he felt God’s strong leading to do this with Daniel so they went. We know we can always trust God to provide what He requires and He did. The “graduation” ceremony yesterday blew me away. The fathers and sons shared what they learned and then the fathers gave each of their sons their blessing as they welcomed them into manhood. I highly recommend this program to all the fathers out there whose sons are entering manhood. Please do not miss this opportunity to have this time with your sons. If you are interested, feel free to email us and Dan can give you more details. I cannot thank God enough for what I witnessed yesterday. He is good!!!!
Till the next update…
In His grip,
James 1:12 Blessed is the man who persevere s under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
MARCH 15, 2008
Dear family and friends,
I finally decided to go ahead with the celiac plexus block. My pain is not easing up - it only seems to get more intense with each passing day and the break-through pain medicine is not working. The appointment is already set for March 25 but before I can even head out to the pain clinic, I will need to go to the lab to check my white blood cell count. If I am found to be neutropenic that morning, I can’t have the procedure. It’s all in God’s hands.
As some of you probably remember, the last time I had this done I woke up 15 hours later than when I was expected to be out of the hospital. Instead of this being an out-patient procedure, I ended up staying in the hospital overnight. Needless to say, it was a bit traumatic for everyone. To avoid the same problem, the pain doc will try a different kind of anesthetic. I am not expecting to stay overnight but we’ll go ahead and pack toiletries and an extra set of clothes in case things don’t go as planned. Thankfully Daniel will be on spring break during that time so we don’t have to worry about making sure he is covered.
I continue to ask for your prayers for strength to endure this pain. It sure isn’t easy but thankfully God is always good.
Till the next update…
In His grip,
Lamentations 3:25-26 The LORD is good to those whose hope is in him, to the one who seeks him, it is good to wait quietly for the salvation of the LORD.
27 Mar 2008
Subject: Tony - Nilotinib - going back on Sutent
Kay wrote: He (Tony) had severe side effects from Nilotinib - AM-107. He is now going back on Sutent.
I'm sorry to hear Tony had problems tolerating Nilotinib. I have problems with toxicity as well that I have had to take a week break too. I went for two weeks straight and took a week off and then had to do it again recently. I won't get a scan until middle of April so I don't know if this is going to work. I hope it would since Gleevec worked well for me a for a few years while on a suboptimal dose.
May I ask why Tony's going back on Sutent if he had disease progression while on Sutent?
I also saw your note on the Caring Bridge guestbook page and I want to thank you for your prayers. You don't know how much it means to us to know that people lift us up in prayer.
Take care, Minnie
MARCH 31, 2008
Dear family and friends,
Daniel drove me to Denver to see Dr. Basche last Friday. It was his very first long drive with just the two of us (without Dan) and he did such a great job. If I am not mistaken, he has met the 50 hours required of driving time to get his driver’s license but he still has to wait another month or so to get his driver’s license because he has to have his permit for a year before he can get his license. Dan and I agree he is ready to drive on his own. I was so proud of him and felt a little funny during the trip. When he opened my door and offered his hand to help me out of the car, I couldn’t help but smile. I told him that it wasn’t so long ago when I was the one who opened his door so I can carry him and put him on his stroller. Now he’s the one who opens my door to assist me either to walk or help me to the wheelchair. I know it’s silly but I got emotional over it and had to get myself together before we got to the doctor’s office. I thank God for him. God is sooo good!
My last appointment was not as encouraging. Daniel and I were able to talk about the appointment when we grabbed a bite to eat on our way home. I wanted to make sure he understood and knew how he felt about it. I thank God for the maturity He has given Daniel and the wisdom He gave Dan to guide Daniel through this.
I lost about 4 lbs. instead of the usual gaining a pound here and losing a pound there. I am working hard on gaining it all back as Dan is threatening Ensure again. I can eat because food doesn’t taste funny but it’s really hard to keep my weight up. I have to admit I still can’t eat a lot but I think I eat more than I used to.
What’s not so encouraging is my alkaline phosphatase count is up again. I don’t have the most recent one from Friday but the March 7 test showed that it has gone up to around 454. That can mean that the tumors are active and the liver is in distress. My platelets are also extra high which is more than likely from the inflammation from the liver. These two numbers tell us that my next scan which will be in two weeks might show more disease progression. So in case this might be so, we need to be ready with our next plan. As some of you know, tolerance is always a problem for me. I am on a suboptimal dose still because I can’t even go on for two straight weeks without having problems with side effects or toxicity that I have to take a break. We need to make a decision if I should go ahead and go for the optimal dose of 400 mg and see if I can endure it and if I continue to have problems then move on to another drug. The good news is I heard there’s another drug on clinical trial that I might be able to get as an off-label script. If I can avoid having to travel I would. I can barely make those trips to Denver without having to pay a price so it will be nice to be able to try another drug off-label than go to a clinical trial elsewhere. Please pray for wisdom and discernment for the decisions that need to be made.
I don’t think the celiac block is working or going to work. It’s been a week and I didn’t feel much different. It’s the prednisone that seems to help with the pain. I noticed that when I forgot it the other day, I paid for it. What next? I really don’t know.
Thankfully we have a very big God. Because I am His, I am never out of hope. Life is good and life is full because He is our God. He is faithful every step of the way and He has blessed me with all of you to sustain us through prayer. Your love and support mean so much to us. You are all God’s gifts to us so thank you. Please keep your prayers, emails, notes, cards, etc. coming. They lift me up more than you'll ever know. I apologize that I am not able to reply sooner but please know I read them all and treasure them so.
Like always, we’ll take it a day at a time, a moment at a time, a prayer at a time.
Till the next update.
In His grip,
Matthew 6:33-34 But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
April 11, 2008
Dear family and friends,
After months of not so encouraging news, I finally have some good news to share. While this last report still states that there is extensive metastatic disease it also reported no disease progression! There’s a tumor that seemed to have shrunk and is less active and one that grew and is a bit more active but both of the changes were so small that it’s hard to say if the tumors really shrunk or grew. It’s encouraging because this is the first report we’ve seen that showed no new tumors or significant growth in size or activity in a long time. What my oncologist would like to do is for me to try to increase my current dose of 200 mg to 300 mg and see if I can tolerate it. Her hope is we will see improvement at a higher dose if we are truly seeing stability now. If I can’t go any higher, I will stay at this dose and get another scan down the road to see if this dose can keep the tumors stable. If not, I will then switch to another drug.
Now for the not so good news. My hematocrit (HCT) count is pretty low so I will need to go back to the hospital on Monday to get a blood transfusion. I don’t have to stay there overnight but I will need to be there for six hours. The other not so good news is I lost another two pounds so my weight is back in the 80s range again. The prednisone was supposed to help me gain some weight but it obviously didn’t. We’ll continue to work on this one but for now we will celebrate this report. It’s been a while since I’ve seen the boys smile from ear to ear. I can’t even begin to describe how it felt when I told them. Daniel’s face lit up and… oh that smile got to me. God is good!
Till the next update…
In His grip,
Psalm 52:9 I will praise you forever for what you have done; in your name I will hope, for your name is good. I will praise you in the presence of your saints.
17 Apr 2008
Subject: Re: Need info on AMN 107 - for Maura
Maura's post: My most recent scans show progression of my liver tumors. AMN-107 may be an option for me, I am looking for info regarding side effects, successes, etc.
As always, I'm a day behind and a dollar short:(. I meant to respond to you when I saw your post but the this week has been rough. I'm so sorry to hear of your disease progression. I hope and pray you and your family are experiencing God's peace and comfort at this time.
Yes, AMN107 seems to work for me. This is the first report I've had since Oct 2007 that showed stability, no significant growth and no new tumors. There were two tumors that the radiologist mentioned. One shrunk and the activity was less and the other grew and the activity increased but the numbers were so small my oncologist said they can't really say if it shrunk or grew. Somebody here mentioned that sometimes the slice makes a difference.
Having said that, the side effects of this drug are not easy to tolerate. Granted I have always been overly sensitive to medication. I've had to take some breaks along the way and couldn't go up to the optimal dose because of toxicity and tolerance. Because of this last report my onc would like to push and see if we can go a little higher to 300 mg from 200 mg and see if we can see real shrinkage or real stability on the next report. In my excitement I agreed with her when I saw her last week. But this week has been horrible. I had a blood transfusion last Monday because my hematocrit was quite low. The following day I felt like I had the flu. I was having low-grade fevers off and on and chills and I was so tired I couldn't get out of bed. The pain was more intense and I couldn't get a comfortable position. I was also sweating like crazy so the chills always followed. I felt rotten. I thought all the symptoms were going to go away but they didn't. I finally went to the ER today after my onc's nurse convinced/ordered me (my onc is on vacation) to go. My oncologist actually called me from her vacation because the nurse called her last Tuesday. I didn't get her message so I didn't think it was a big deal but I didn't know she was really worried that I might have had some adverse reaction to the blood transfusion. I felt a bit better yesterday and felt worse today so I gave in and went to the ER this afternoon. The good news is I don't have any adverse reaction to the blood transfusion but the ER doc and the on call oncologist can't explain why I feel this way. They referred me back to my oncologist. When we got home, I went to the Novartis site and read up on the 12 page medication guide on AMN107, abstracts and all that I can find about it (GSI site and others). It looks like what I have and am feeling are side effects of this drug - AMN107. Now I'm not so sure I'm ready to go up on the dose come Monday. My onc will be coming back tomorrow from her vacation so I will talk to her then.
Here are the side effects that I think may be related to Nilotinib. I'm sure I'll miss something but here's what I remember for now. Dry eye, eye pain (it really hurts, like there's something pushing your eyeball) / Flushed / Low-grade fevers off/on / Shortage of breath / Pain when breathing deeply / More pain in the lower abdominal area along with the other abdominal areas that I've always had trouble with and goes all the way to the back / Nausea / night sweats (I change PJs about three times a night. You wake up cold and wet. I only have so many running shirts that have wick protection & they don't work as well anyway when you are soaking wet) / fatigue & weakness / Flu-like symptoms / Chills / Headache / Diarrhea / constipation / Bloated feeling / Weight loss - I've lost six pounds the past four weeks / Leg cramps / Loss of appetite, the food is starting to taste funny but not metallic - they either taste too salty or overly sweet - I feel full after two-three bites / Dry mouth / I also noticed that my nose is constantly dripping / Liver enzymes and blood counts have been out of whack
I don't want to discourage you with this list because as I said, I have always been overly sensitive to medication from day one. I know you were able to tolerate much higher doses than I could when I first started on Gleevec. I haven't really talked to my onc about these side effects because our last meeting was disrupted when she saw my blood work and wanted to get me admitted to get a blood transfusion. Even though I had my notes ready, I just wanted to go home to celebrate and make sure I didn't get admitted to get a blood transfusion and wait until Monday. Yes, stupid I know - I just wasn't thinking! No excuse for my foolishness so now I have to get on the phone with her which I hate because it's so hard to talk on the phone when you are always trying to catch your breath and I sure don't have the energy to drive to Denver tomorrow. Aaarrggghhh!!!!!
As frustrating as these side effects can be, I know God is going to get me through. He's not going to leave me or forsake me. I know I will not have to walk this alone and I know this didn't come as a surprise to Him. So I will have to take it a day at a time, a moment at a time, a prayer at a time and see where God leads.
Hope this helps. Take care.
In His grip, Minnie
Minnie stopped Nilotinib and started Nexavar - see Nexavar page
5 Mar 2008
Subject: Re: Tumor Fever Butch
Update on Butch, we finally saw Dr. Tap at UCLA on Friday after being hospitalized last week in San Diego for 4 days and waiting 5 days for a follow up. Anyway, he took one look at Butch and called for an admission to UCLA, Butch had a ct scan on Friday that showed he now has mets in his omentum which apparently were not there in January and did not show on the MRI done last week at UCSD?
Dr. Tap believes that this is causing the abd pain, bloody ascites and issues with his bowels and is contributing to his weight loss and overall deterioration. He has acted quickly starting him on AMN107, diuresing him with lasix, giving him protonix for stomach issues and morphine for pain, yesterday they drained a right lung pleural effusion via thoracentesis to alleviate his feeling of fullness. His appetite is good but physically he has no room for food or drink so he is down 25lbs.They pondered IV nutrition but it also adds fluid which will increase the swelling that we are trying to get off his belly to make him more comfortable. Dr Tap states that he will only give AMN about 1 month to work as he may need to act quickly and get Butch on something like a HSP inhibitor. Incidentally, Marina he has had a 99.4 temp for about a month now. Anyway, as always we are all ears for your suggestions, opinions and guidance, if anyone knows when oral hsp-inhibitor trials are opening and where they will be that would be great, we just left UCLA (after 5 days) but we live in San Diego. Thanks for all your support and knowledge.
Wife of Butch dx'd 1/2000, whipple procedure primary in stomach exon 11, ckit pos, liver mets 1/2001 gleevec trial UCLA 4/2001 shrinkage, resistance 10/05 dose increased, 3/06 started sutent played around with sutent to completely eval effectiveness until 9/06-no response from sutent, 2/07 sirtex spheres UCSD-ineffective, trial opens at UCLA 9/07 randomized to gleevec supposedly stable dx as of 1/08 however wt. loss, back pain, random infections (urine, respiratory) plague him, 2/1/08 sudden onset of abd pain with extreme abd swelling brought to er CT scan no change from 1/08 ct scan, sent home with dx of mild ascites, dehydration, partial ileus, r lung pleural effusion, returned back to Er 2/22/08 for severe abd pain with distention admitted 2.6 liters blood tinged ascites removed via interventional radiology, MRI abd-no significant change from last CT in 1/08, sent home on marinol for appetite, lactulose for constipation, morphine for pain. Recheck appointment with Dr. Tap UCLA 2/29/08 Dr. Tap orders admission for pain control, nutrition and thoracentesis released from UCLA 2/5/08
21 Apr 2008
Subject: Help Nexavar denied, spinal metastasis Butch
Butch was just released from 5 days in the hospital. The outcome was horrible news. He has deteriorated steadily since February with weight loss, ascites and pain however they had put a picc line in and started TPN ( he did not tolerate this at all) anyway last Tuesday he had a high fever so I brought him to the ER, his WBC count was 24,000 they admitted him gave him IV antibiotics and we were cruising right along until Thursday his PMD made a special trip to see us in the hospital which we thought was very nice however her news was not, she told us that the ct scan done in the ER showed worsening of his peritoneal mets with NEW mets to the spine. She told Butch "we need to get you out of the hospital to enjoy the good days you have left" I can barely breathe as I write this. I really did not know that GIST goes to the spine?
Dr. Tap at UCLA was informed he is also quite shocked as this was not seen at UCLA 3 weeks ago. Butch had been taking AMN 107 since 2/29 I guess we can say that is not working, he also has built up ascites again which we are attributing to the AMN. Anyway, Nexavar was Dr. Tap's next option until another trial became available however the insurance denied it and b/c we made over $45,000 yr Nexavar reach denied him to get it for free, it costs $5,500.00 a month
I am beside myself, not sure which way to turn next, the good news is since the infection is improving ( WBC 12,000 on Sat. ) he is feeling really good and eating well. He does not want to give up ( he is 37 yrs old), ANY input at this time would be soo appreciated.
22 Apr 2008
Subject: Re: Help Nexavar denied, spinal metastasis Butch
Hello everyone, Thanks for the overwhelming support and advisement. First off Butch is feeling great he has been eating and much better since he left the hospital but after seeing Dr. Tap today he does not really think that will last for long especially with the ascites accumulating. SOOOO, In a nutshell he recommended a HSP trial first then we can have nexavar if needed later. I appreciate all of your feedback/suggestions. I have some homework to do so that we can make the decision, we would like to stay close to California if possible Butch loves it here and we have our dogs here so we will see what happens. Thanks for all of your interest, encouragement, ideas. I hope that all of you and your loved ones stay well. Sincerely, Kerry
Butch moved into the Sorafenib (Nexavar) trial - see Nexavar page
28 Jun 2008
Brad, Could you give me some infor on 1820. My husband John is in a very bad way. Gleevec after 2 years stopped Stutent did not work his liver is full of mets. He looks like he is pregnant and in pain without his pain meds. Had a bad tumor bleed hospitalized for 1 1/2 weeks kidney failure is now on dialysis.
Dr. Trent MDAnderson has put him on Tasigna 400 mg. He has been on it for 1 week. It is so terrifying waiting to seen if it works. He is in bed or barely into a chair. On pain meds most of the time because of pain. Fatigue is huge. He had virtually no side effects on eitherGleevec or Sutent.
Where were you in this journey of Gist when you got on X 1820. Please, I do not mean to pry but your situation might give us some hope. This part of this journey is hell. My poor John.
4 Aug 2008
Subject: Re: questions on Tasigna
Hi My daughter Sile started to take Tasigna last saturday, she felt nausea, stomach sore, fatigue. I found it's hard for Gist patient to take this medicine, becuase Sile ate samll portion of food throughout the whole day, this drug must take by 12 hours a part, three hours without food before and after taking it... my question are when is the best time to take theis medicine, and can she still drink something, such as coffee or juice? Is there anyway to prevent side effect? Thank you very much for all input. Jennifer(mom of Sile, 18 yrs old)
9 Aug 2008
Subject: Re: Side effect of Tasigna
It's 1:30am, my daughter wake me up because she had severe skin rash,I put Beneraol gel and she took two tablets, but didn't work well.I knew one of side effect from Tasigna is pruritis,how can we treat this? She is a 18 years old girl, she refuse to take it because her leg looks horrible with red rash. Thanks. have a good weekend. Jennifer(mom of Sile, 18yrs old)
12 Nov 2008
I believe the other name for Nilotinib is Tasigna . My daughter Sile who is 18 years old college freshmen started taking 800mg, then reduced to 400mg, on and off for three months. The side effect is much better than Gleevec . Her latest scan (last friday ) showed stable and decreased uptake on PET. I think the Tasigna is working. I hope it will do the same to you.
Good luck. Jennifer(mom of Sile)
26 Sep 2009
Subject: Re: hair lose for Tasigna?
Does anyone who takes Tasigna experiencing hair lost? My daughter Sile who is 19 years old taking Tasigna since June, she found out her hair is losing, that's really scared her. Because she is a very fashionable sophomore of NYU. She always looks good, no one can tell that she has tumor and taking a chemo. I think hair lose is the worst thing that will happen to her.
Thanks for your help.
Jennifer (mom of Sile)
8 May 2008
Started on Tasigna (AMN107) on March 29th taking 4 tablets a day (a total of 800 mg a day). I've got 2 known mutations - exon 11 deletion and T607I. Since Tasigna doesn't block T607I it was a forgone conclusion that this would not block activity in all the many tumors i have. The idea was to target one set of mutations with Tasigna and then switch to another med to target another set of mutations. Unfortunately, even after 5 weeks of Tasigna i had significant growth of my tumors, including the emergence of several new ones (around my lungs and by my heart - bad news). I had no noticable side effects from Tasigna other than a strange sense of dizziness i would get about an hour after taking a dose (not a headache, just dizziness). Before Tasigna i had been on Gleevec, Sutent, and Sutent + Avastin. On May 10th i switched to Nexavar (and had much better results).
Kevin started Gleevec/Sutent combo in September 2008 - see Gleevec/Sutent page
10 Sep 2008
Subject: Rene Update
Got home from Atlanta this evening. Good trip !! First of all, Dr D'Amato was a pleasure !!!! She had done her homework on Rene'. She knew all of her past and had a few questions of her melanoma back in '85 and '97 in addition to the primary GIST of '93. Once she gathered all her info and gave us the history on GIST cancer and how it mutates, she gave us her recommendations. After looking at her latest and last few scans, PET and CT, she definitely believes it is time to find another treatment, other than Sutent, as the many "hot spots" on the PET scan shows activity. Also liver surgery is not an option due to the locations and number of the tumors. So, ..... there were two roads to travel, .... 1, try to get one of two drugs, "off-label", being used in clinical trials today, from our local pharmacist, to keep from having to travel to these sites (Boston, Chicago, or St Louis). If our insurance does not approve the drug, Dr D will write to the insurance company to persuade them. 2, Gather information on the clinical trials to enroll in one of the above cities. We came home with this game plan, .... try both options and see what fish bites first. The new drugs are called (for those of you that are interested) Tasigna (AMN107) and Sorafenib.
Now once we got home we went directly to our pharmacy friend to see if he could get it (AMN107) and then to see if it would be approved. After a few short minutes of waiting, he said "WOW .... insurance just approved it and I can have it tomorrow" !!! Now some people like to complain about insurance companies, but let me tell you .... insurance is a wonderful thing !!! I won't mention the cost of this stuff but WOW !! The continued plan will be, to be followed up by her local oncologist here and do scans in two months, sending a copy to Dr D in Atlanta. She is also working on a clincial trial using a different drug but hasn't got the approval on it yet. That may be our fall back plan later. Going forward right now, Rene will be using drugs that are not specifically designed for her cancer.
So what looked like acquiring a new treatment was going to be long and difficult ........ it was a snap. Isn't God good !!!
Marty and Rene Orlando, Florida
1993 Rene's primary removed from small intestine (thought to be benign tumor)
1999 Liver mets (thought to be metastatic melanoma due to prior melanoma in 1985 and 1997)
2000-2002 Many different rounds of chemo-therapy
Apr 2002-Sept 2002 After diagnoses change to GIST started 400 mg Gleevec
Oct 2002-Sept 2005 600 mg Gleevec Stable
Oct 2005-Apr 2006 800 mg Gleevec Slight progression
Apr 2006 - May 2008 50 mg Sutent mostly stable (second largest tumor slightly progress with each scan)
June 2008 - Aug 2008 50 mg Sutent combined with 400 mg Gleevec PET showed activity
Sept 2008 200 mg AMN107
September 23, 2008
After a week of being on Tasigna (AMN107), Rene woke up yesterday with a rash and she has been dealing with daily headaches. She called her onc and he had her come in to do some blood work. Her hemaglobin was 8.0, red cell count was 2.16 so he sent her over to the hospital for 2 units of blood today. That was an all day thing. Home now.
We'll see where this takes us ....
Marty and Rene Orlando, FL
29 Nov 2008
Subject: Rene Update
Hey Dudes and Dudets !!
Update on Rene from Orlando. Back in August her PET and CT scans showed continued activity of the liver tumors. We took a trip to Atlanta to visit with Dr Gina D'Amato. I was then she directed Rene to move on to Tasigna (ANM107). After two months she recommended antother PET scan. Well the November scan showed continued hot spots, SUV of 18. This coming Tuesday we travel back to Atlanta to start a clinical trial using Dasatinib, sponsored by Bristol Meyers Squibb. This will require an Atlanta visit every 28 days for a check up. Seems as thought the side effect will be about the same as Gleevec and Sutent. We'll see ....
Later Gang .......
Marty and Rene Cordeel Orlando, Florida
Sept 2008 - Nov 2008 200 mg AMN107 PET scan showed continued activity Dec 4th - Will start clinical trial on Dasatinib
30 Nov 2008
I assume this is the trial
Dasatinib for sarcomas...SARC trial...I know that dasatinib for GIST trials has been around a while, and yet it seems like we never hear anything much or anything highly positive...
Why not Sorafenib, which has some released data (at ASCO) that look pretty good and is available by off label prescription...could be combined with other drugs such as vorinostat, rapamune, velcade...
22 Mar 2010
My wife has been on Tasigna for 9 month now. It has kept her liver tumors, I would say mainly/mostly stable. Very slight progression here and there. She is due another scan this Wednesday.
Marty and Rene C Orlando, Florida
22 Mar 2010
Subject: Re: Any experience with Tasigna plus Dasatinib (Sprycel) at the same time?
Dasatinib alone didn't do a thing for Rene.
24 May 2010
I haven't posted in awhile, but those of you that are on Tasigna, have you had to deal with any kind of rash. My wife Rene had to deal with a rash during Gleevec. Not with Sutent or Disatinib. I haven't heard anyone dealing with a rash while on Tasigna ...... but I my have missed something. Rene has been on Tasigna for 10 months now and this just popped up.
So anyway just wondering, ....
Marty and Rene Cordell Orlando, Florida
28 Aug 2010
How is Regorafenib doing for you?? My wife Rene has been on Tasigna now for just over a year and it seems to have started to fail her. Just looking for what is next.
Marty and Rene Cordell Orlando, Florida
12 Nov 2008
Subject: Starting nilotinib
Hi all saw the onc today and will be starting the nilotinib tonight. Fingers crossed all goes well this time. Jessica
December 6, 2008
I am also taking nilotinib, I was started on the standard 800mg but after only 2 days started having sever nausea and vomiting. The onc reduced the dose to 400mg and I am tolerating that well although he is going to slowly increase the dose again after Christmas. Other than the nausea the only other side effect I've noticed is lack of appitite, I have to force my self to eat otherwise I'd go without. Sorry I can't help any more than that, wish you luck with your treatment. Jessica Melbourne, Aust
20 Dec 2008
I haven't posted in a while so I thought I'd let you know where I am. I started on Nilotinib (tasigna) about 4 weeks ago=2C starting dose was 800mg but after only 3 days at that dose I started having uncontrolled vomitting so the dose was reduced to 400mg. I am managing well at this dose and my oncologist is happy for me to stay on the 400mg till I get my scans at the end of Jan. Here's to a great christmas to all. Peace,Love and Happiness Jessica
17 Apr 2009
Just thought I'd update you on how things have been going. I just got out of hospital after spending a week in there for things such as low blood counts and clots. This was resolved with injections and blood infusions. I am still weak and very tired all the time and get night sweats when I sleep. But I am better than when I went in.
As most of you know now the RING trial has been cancelled. This means there are really no other options that I am willing to take and will now most likely be treated to manage symptoms. I find out on Monday which arm of the trial I was on but we feel that I was the drug arm as I always threw up immediately after each infusion.
If anybody has any questions I will try and answer. Peace, Love and Happiness Jessica
18 Apr 2009
I have already tried Tasigna along with Glivec, Sutent, R1507. None of which have worked for me.
Can you get Nexavar (Sorafenib)? There really is a theoretical rationale for it in NF-1 related GIST. Sorafenib blocks something called B-Raf which will be hyperactivated in NF-1 GIST.
Praying for you!
14 Sep 2009
Subject: More Bad News - Jessica Macneil
I seem to frequently be the bearer of bad news. And once again, I'm having to notify the list of another member who has lost her battle to this disease.
I don't have any details, however, her oncologist in Australia just informed me that Jessica passed away recently.
5 Dec 2008
Hi All -
I have moved on from Gleevec, to Sutent now to a phase II trial with Nilotinib at FCCC. I should be entering the study in the next few weeks. I was unable to tolerate Sutent for very long and was plagued with side effects and am now having some rapid tumor growth as well.
I lasted for a fairly long time with Gleevec, much less so with Sutent.
Can anyone give me advice or heads up on Nilotinib and what to expect. I know it is given bid with a number of hours fasting pre and post ingestion. Is anyone having any luck with it out there in light of tumor stabilization or reduction?
I'm not crazy about the idea of having experimental only treatment, although I know that this is how Gleevec and the rest of these medications came about. It feels like walking a tightrope without a net underneath. Has anyone ever felt that way?
Thanks for any help or suggestions you might have. I read the postings frequently, but write rarely. To be honest,I'm a bit scared to be in this position. Thanks, Charles
7 Dec 2008
Subject: Re: Nilotinib/Scared
Hi Jessica -
Thanks for the information. I have an EKG and a MUGA test next week. Just had a CT and blood-work on Thursday, when I found out Sutent failed.
How long have you been on it?
Were you on Gleevec or Sutent before? How does it feel to you to be out of the realm of "standard" treatment and getting what might be considered more of an experimental treatment. It feels strange to me, but maybe it's just me.
Good luck to you too. Thanks, Charles
1 Nov 2009
Subject: My Impending Demise
Hi All Gisters -
Well the time has come to tell you all that I am withdrawing from GSI and life in general. I have been in FCCC the past week and Dr. VM agrees that there is nothing left for me in terms of treatment.
I fought very hard since 2004 and not only are my abdomen and pelvis encased in tumors so much so that my GI system cannot function. At 128 lbs. surgery is not considered an option and I am in hospice. I was put back on my original medicine - Gleevec, as nothing else has worked.
I thank each of you for all your help and support over the years. You have helped me through some tight spots.
I am receiving adequate pain control and am here with my girlfriend. I only wish I could eat. Bless each of you and thank you again.
I hope your lives are as rich as mine have been post-diagnosis. Good luck to you all.
27 Mar 2009
Subject: up date on Chris W
Hello all Haven't posted for awhile but am an active reader. Chris has been in the hospital twice this month; once for 10 days of transfusions due to a gastric bleed thought to be caused by the Rapamune. His hematacrit was a dangerous 15 so we opted for an expensive ambulance ride to Boston. A week after discharge we were back with hepatic encephalopathy .....this time is wasn't the tumors in his liver but a clot in his liver that was causing the liver to fail. Docs at Dana Farber don't feel they have anything left to offer as he has been on Gleevac (8 months-no effect) Sutent (2 years good initially then failure) IPI 504 (no effect) Nexavar (no effect) Gleevac double dose of 800 mg with Rapamune no effect) and finally Nilotinib. He has had 3 surgeries the last one removed 5 tumors (all of them) but during surgery many "spots" on his liver were noted....they all turned into tumor. We were hoping to get down to the Hippocrates Health Institute a holistic raw food spa that has had some success with people we know in turning around cancer, but Chris can't travel with clots and general weakness. We are continuing the Nilotinib in hopes that something will kick in (he has only been on it a few weeks. Karen Wife of Chris diagnosed with GIST May 2004 Exon 9
27 Mar 2009
As he has never responded well to any KIT inhibitor, I am asking if his last surgical samples tested positive or negative for the presence of the KIT protein?? Is his GIST still KIT positive?
A GIST tumor could have a mutation in the KIT gene, and yet no longer express the KIT protein within the cell--so there is no target for the KIT inhibitor (Gleevec et al) in the cell.
Could he travel to find the MP470 trial? This drug is a KIT inhibitor, can block some exon 17 KIT mutations, and the receptor called AXL which may have a role in a small percentage of resistant GIST. From personal experience when I was very ill, I will say that a patient can sometimes travel through airports and long distances when he can't think that he can. Sites in Scottsdale, Santa Monica, and San Antonio...
28 Mar 2009
Subject: Starting Tasigna
I have had to stop taking nexavar because after almost 4 months since surgery I am still not healed. Two months after surgery my incision finally healed however a month later two areas opened up again and have not healed yet. I stopped taking nexavar 10 days ago. Today I picked up my prescription of Tasigna which I will start taking in the morning.
14 Aug 2010
Hi All, My life has been quite hectic this year and so I haven't been writing the list; however, I am keeping up on what is happening and keep you in my prayers. In early Nov. last year I left for what was to be a 2-1/2 month visit to Australia to see my father. At the end of December he had a fall and fractured 7 ribs and as a result has gone from being on oxygen 60% of the time to 100%. Since 29 Dec. he's been in hospital all but 2-1/2 weeks. I am the only family member willing to take care of him and since he also asked me to stay, I have stayed.
I'm now seeing my former oncologist in Canberra and am getting Tasigna from Novartis. I'm doing well on the Tasigna and have now been on 600mg since March '09 with no side-effects. On Monday I'm going in for surgery to remove mets from my right lung. This will be my 8th surgery to remove GIST tumors and surgery no. 9 will take place approximately 6 weeks later on my left lung also to remove mets. I'm a little apprehensive, however, I have a very good thoracic surgeon. I'll also be on the same floor in the same hospital as my father, only I'll be on a different ward. It also helps that I already know most of the nurses.
I'm disappointed that I'll miss the GIST Summit in Houston this year. I really enjoyed the one last year and will miss catching up with old friends and meeting new friends. Thanks to Barbara for agreeing to sell my fundraising cookbooks at the event. All proceeds from the sale of the cookbooks will go to Dr Trent for GIST research. So, if you haven't already, please buy a cookbook. They make great gifts!
Take care, Kath (in Canberra, Australia's capital)
17 Apr 2009
I am very sorry to read your news. I am surprised that there is not more discussion her regarding IPI-504. For all of us it seemed like one more weapon we could look to when needed. I am now taking Tasigna off label. Have you considered trying that? For me there are no side effects - I will find out in a few weeks if it is working.. My best to you.
8 Oct 2009
Subject: Maura's results with Tasigna
I am so happy to report that after seven months on Tasigna my scans this week were stable!!! Again a three month reprieve.
28 Oct 2009
I have been on Tasigna since March, after six years of Gleevec, two months of Sutent and a few embolizations. I have been fortunate that Tasigna is very tolerable for me, much more so than Sutent. Maura
30 Nov 2009
I was diagnosed with GIST, at the age of 33, seven years ago. I had a sixteen month old at home and a one week old at the time of my diagnosis. I know first hand how scary, frustrating and tiring fighting GIST is. I have been on Gleevec, Gleevec plus Rampamycin, had two embolizations, Sutent and now have been on Tasigna since March. I feel much better on Tasigna than I have ever felt and my last scans were stable!!! Please email me directly and I will be happy to answer any questions that I can about my experiences with Tasigna!!
23 Apr 2010
Subject: 1 year plus on Tasigna....
I have been on Tasigna for 13 months. I have felt great but lately very, very, tired even with taking Ritalin for the fatigue. I also started having an ache in my right side which I think may be from the tumors in my liver. Today, I may have to break down and take a pain pill which I haven't had to do in ages. Obviously, this is concerning to me, but I am hoping and praying for the best. I just look at those little girls of mine and can't believe that anything can be really bad as they still need there Mom...
I have scans on Monday at DF and hope to be able to meet up with some of you next week. I will also be there on Wednesday for my results with Dr. George.
dx in 2002 at age 33
mom to Michaella age 9 & Bella age 7
26 Apr 2010
Subject: Bleeding tumors causing extreme pain
Hi everyone. I am hoping someone can give me a little insight. I am currently on Tasigna and have been feeling great until the past few days. I have had Extreme pain in my upper right abdomen. Had a CT today. I was also suppose to have an MRI but because of the pain I couldn't lie there. The CT suggests that my tumors are or have recently been bleeding. Both my platelets and WBC are up although I don't have a fever. I am meeting with Dr. George on Wednesday and until then will be popping some pain pills. The Nurse practioner, whom I saw today, said there was also a possibility that one or more of my tumors may have become infected. Has anyone ever heard of anything like this? Not sure what my next step will be- if I will be staying on Tasigna or going to try something else.... Hopefully will have more answers Wednesday!! Maura
28 Apr 2010
Subject: Maura's BAD news & anyone on REGORAFENIB
Bad news at Dana Farber for me today. My pain has been from my tumors in my liver growing up and out. Not good. The Tasigna is no longer working. Dr. George suggested I start the Regorafenib trial here at DF or go to Sloan Kettering for an IGF 1R antibody trial. Who is on Regorafenib? Any information would be appriecated. I am going to call Dr. George tomorrow to discuss. This is not a position I wanted to be in...
Little Bella makes her 1st Communion on Sunday and we are expected to have a beautiful sunny day. I hope I can keep it together.... Maura
10 May 2010
Subject: 1st day of Regorafenib trial @ Dana Farber
Hi everyone, Thanks to so so many of you who sent me encouraging words and prayers these past couple of weeks. I really appreciate it.
Today I started the Regorafenib trial. To start it is 4 40mg pills daily for 3 weeks and then a one week wash out. There are a lot of pet scans in this trial, I had one today and will have another in two weeks. So far no ill effects from my first dose- This is great compared to my first does of Sutent which I proceeded to throw up in the ladies room at Kohls...
I have a little drug diary, as part of the study, in which I am to record when I take the dose and any side effects. I will let you all know how it goes. Originally I thought I was going to be patient #5 but today it says on my paperwork patient# 007 I think that is pretty cool.....
28 Jun 2009
Subject: Exon 9 -Tasigna
I am an exon 9 kid on Tasigna. I have only been on it for 8 weeks, but so far, so good. It has shrunk one of my tumors and slowed the growth of the other two. I feel fine, although I do have to take various stool softeners to avoid constipation. I have more energy than I did on Sutent, which is nice.I go back to Dana Farber on July 30, and HOPE to find that this drug is still doing something positive.
August 03 2009
I have been on Tasigna for 15 weeks now. I had a scan on Friday and all of my tumors are getting SMALLER. Yahooey AND I feel really good. There IS life after Gleevec and Sutent and Nexavar. Carry on!
9 Aug 2009
Well I am back on the rollercoaster. I am afraid that I was premature in celebrating the shrinking of all of my tumors. The existing tumors did shrink but a few days after my appt. I got a call from my oncologist telling me that the radiologist had sighted two new tumors. These news ones are near my uterus and will probably have to be removed. I am having another scan on September 16 and meeting with a surgeon then. Ah me, this is never easy, is it? But thank you all for your congratulations! I still feel good and that counts for a lot in my book.
22 Sep 2009
Subject: Mixed response - Tasigna
Well, I am headed for surgery on 10/1. I met with Dr. Bertagnolli at Dana Farber last week. She was straightforward, and didn't try to hide the fact that this will be a complicated surgery. Three of my tumors are responding well to the Tasigna, no growth, some shrinkage. A third has grown steadily since April. It is in the pelvic region and I will need an ileostomy for three months and might need a permanent colostomy. I rode my bike 80 miles on Saturday and I have this cancer growing inside of me? It doesn't make sense. Anyway, I am curious as to what drugs i might be on AFTEr the surgery. I guess at this point I am willing to try anything! Thanks for your support, and carry on the good work. This group is like family.
12 Sep 2009
Subject: 1 week on Tasigna
Hi, I have been on Tasigna 1 week now after Sutent failed after only 4 months. I need advice for red rash on my face, and scalp is very sensitive. Anyone have any ideas as to what to put on it? I have a whole body and it picks my face to show up on.
I am to start radiation for the bone met in the iliac on Monday. I have an appt with a sarcoma orthopedic surgeon on Monday the 21 concerning the humerus bone.
26 Sep 2009
Subject: Itchy scalp on Tasigna and surgery scheduled on left humerus
Hi everyone. I wanted to report that I have finally gotten the itchy scalp to calm down a little bit, and the rash is not as bad on my face. I have been on Tasigna now since Sept. 5th, I seem to get tired more and sometimes out of breath. My feet are better but I still have some soreness on the soles. Blood work was good. Surgery scheduled on my left humerus for Oct. 15th. I managed to postpone it one week so I can go to the meeting in Houston on the 10th. I am looking forward to it. My arm is VERY sore, and I am hoping nothing happens to it in the meantime. Marilyn W
12 Nov 2009
hi everyone. i just got back from mda today and appt. with dr. trent. COMPLETELY COLD PET!!!!! Tasigna is working. Still having issues with left arm that I had surgery on. The nerve is still not following the orders from my brain to work. Dr. Trent feels i need therapy, more than just the splint that was made for me. I am going to see the therapist tomorrow to get the splint repaired since i broke one of the fishing lines on it today. i will see if she can get something set up. marilyn w
13 Nov 2009
1st side effect was rough facial and neck/chest skin, sandpaper like, this started the next day after starting. It really did not itch. it has gone away now. 2nd side effect to appear in about 1 1/2 weeks was itchy scalp, it continued for almost 3 weeks, bout drove me mad. i tried several things, i added flax seed capsules 2-3 times daily, washing with head and shoulders with seleium, and started taking claritin. finally it subsided. every once in a while i feel a tingling and i start adding all the above and it goes away. I have had constipation a lot, as opposed to the constant diarrhea with sutent. i get tired alot, but that could be also from surgery. that is about it. it is really alot easier to take than sutant. and the great thing is IT IS WORKING. now if i can get this arm going i can conquer the world! marilyn W
21 Feb 2010
Hi all, just an update to let you all in on results from mda. Unfortunately I have two hot spots on the PET scan. One on the right and one on the left side of the ilium. The one on the right was there previously-but had gone cold on the last scan in Nov. The one on the left is new. There were several other mentions with low FDG uptake on the pet that may or may not be anything, two of which are one very small spot on each lung. Dr. Trent wants to just watch those as they are too small to biopsy. I had suspected it had returned on the right side of the ilium, as I have had pain for awhile in the right hip area and am limping. Dr. Trent wants me to stay on Tasigna for 2 more months and rescan at that time. Marilyn
9 Apr 2010
Hi all, I saw Dr. Trent yesterday. Not good news at all. Tasigna has completely stopped working evidently, cant say it comes as any suprise since last scan showed new growth and I had surgery to remove a healthy tumor, and much pain in back since. The scan results were not printed as of Thur. but Dr. Trent looked at the scan himself and saw "about 10 hot spots", some in bones, muscle and fatty tissue. I should be changing to Nexavar next week if it goes through insurance ok. I guess I will check on Monday as of status. I would be lying if I said I am not worried about having so many hot spots. I am having a lot of pain in the spinal area. He prescribed Darvon. Tried it last night 2 doses and did not find it helped much with the pain, just made me feel sleepy. Dedided to just use ibrophen this weekend as we are at Galveston with my sons this weekend and do not want to sleep away my time. Marilyn Williams
28 Sep 2009
Well it's been a little while since I've posted.. and I figured I would let you all know what has been happening.
If some of you remember I had surgery in March at mskcc with Dematteo. He removed the right lobe of the liver, however they clipped something and i've had a bile leak wound ever since. The wound is coming along, however i've been on no Gist meds since march. Over the course of the summer my back has been hurting so badly i've barely been able to walk. Well finally I found a dr. to take charge here in Idaho. He ran an mri a ct and a needle core biopsy on my lower back. Well folks, it's not confirmed yet, but looks definately as spinal mets... just unknown if Gist. To go along with that, the liver ct shows a new tumor in the liver somewhat near what was removed I guess as well as a new little one in the left lobe. Im currently in the hospital weak, skinny and waiting to receive radiation treatments on the back and Tasigna is where he wants to start on the liver. I know it sounds like another bad luck story, but anybody who knows me knows that as soon as the back pain calms I can start walking again and rebuild my strength, gain weight and work towards normal. I will pray knowing that Tasigna will work Good Lord willing. I know that the good Lord is helping me as I gain strength every day and will continue to do so.
Well I suppose that's enough for now. I will keep you all informed of the soon to be good news.
Take care and God bless,
Rick in Idaho
17 Oct 2009
Hi, everyone I have not posted in a very longtime but Marvin has not been doing so good.He has been in the hospital 5 times since July,most of the time it was his heart that put us there,he has had heart surgery and the tumors are growing now since they took he off the trial at Vanderbilt (Gleevec and Sutent combo).My question is has anyone taken Tasigna and also has CHF and other heart prombles as well.He has just been put Tasigna and I am a little worried about the heart side effects that it has.Thanks for your help.
8 Nov 2009
Hello All I have not posted in awhile because the day after my last post Oct,23 Marvin had another heart attack and was in the hospital for 10 days.He had another stent put in and now we are off Tasigna they do not know for sure what caused it if it was the drug or just his heart condition but we are off treatment for at least another week.I think they are going to put him on Nexavar now and if that does not work or causes more heart prombles we are at the end of options.Does anyone have any idea that we could try,Nexavar scares me as it has heart side effects but we do not know what else to do.Thanks for your help.
March 16, 2010
RE: not good news, lost my husband to GIST today
Marvin Kerr, who battled GIST for over 10 years, a beloved husband, father and grandfather, passed away this morning at 3:30 am from GIST. It has been a long, hard battle. He was put on all sorts of meds, Gleevec, Sutan(sp?), and finally Tasigna...but it only prolonged his time here, never cured him. After battling Congestive Heart failure, heart attacks, and kidney failure, all within the last 6 months, Marvin has lost his battle. I wish you all well on your journey and wish and pray for a cure.
Thank you all for being there, Sheila Kerr
28 Oct 2009
Subject: Sudden bone aches and arthritic symptoms
My mother in law was diagnosed with GIST in April of 2004 and her tumor was successfully removed. Gleevex worked in keeping any future growths under control until Oct of 2008. Sutent was tried and failed. She is now on Tasigna, since May 2009. A bone scan is now showing arthritis in the bones, which seems to have come over her in just the last month. Her back aches, knee locks up, shoulder aches and it is hard for her to get up from a chair. Wondering if anyone else has had any similar symptoms? Don't know if it it the GIST, side effects of Tasigna drug, or left over side effects of Gleevex. The Tasigna has seemed to slow the metastasis down, but suddenly this vibrant woman is exhausted and aching all over. Any suggestions, experiences, or success stories would be greatly appreciated.
28 Oct 2009
Subject: Today's Scan News GIST
I just got back from Dana Farber where I learned that my largest tumor has increased 20% since the last scan in August. No growth has been noted since March, and I'd been stable before that on Sutent for almost a year.
Sutent days are now over, and I will begin on Tasigna soon. We chose Tasigna because it will leave me eligible for a clinical trial 1n 2010 for which I would not be eligible if I had taken Nexavar.
Susan in RI
24 Nov 2009
I, too am exon 11. I went back to Sutent for a few weeks to wait until the bad effects of Tasigna clear up (purple burning rash on my face, heart flutters, headaches, sore muscles). Soon I will restart tasigna, but at low doses and then ramp up to the 800 mg. I could not tolerate 37.5 mg of Sutent, so it may be that I also can't tolerate the full 800 of Tasigna, but would find a lower dose useful. Enjoy your trip to Arizona! We just returned from California.
Happy Thanksgiving to all! Susan in RI
9 Nov 2009
My daughter took a picture of my purple (or dark dark pink today) face and I sent it up to Dr. Wagner by email. His reply opened with "Ouch". They are having me suspend Tasigna and going back up to DFCI tomorrow...I have a few other little effects....
Susan in RI
19 Apr 2010
Yippeeee. I just got a 3 1/2 month leash today myself!
CT scan at DFCI today shows stability (2mm. growth) from January. Troublesome tumor is smaller than it was in October when Sutent failed and I was put on Tasigna. Time to drag out those old party hats again....
Susan in RI
9 Nov 2009
I was on Sutent earlier this year for about 5 months before it was determined it wasn't working for me as my tumor had continued growth. I went off of Sutent (in July) and started taking Tasigna the beginning of September. My husband and I had a trip planned to the U.K. in late July/early Aug so I didn't want to be on any chemo drugs while on my vacation, thus the delay in getting started on the next drug.
It took a little back and forth with the insurance company but my doctors office was able to get our insurance to pay for the Tasigna. They have a very persistent worker there who pushed to get it approved. I think the main thing is to get your doctors office to show that the other drugs have failed and that you need to be on Tasigna.
Susan D DX -- wild type GIST 2005
19 Mar 2010
Subject: How long should one be off Tasigna prior to Surgery?
We are expecting Susan (Duncan) to be released from the hospital on Saturday ( she has been in since Feb 28 ).
I observed two things which prompt me to ask the question, How long should one be off Tasigna prior to surgery? (1) In her original surgery to remove a 9cm GIST Tumor they had to section the colon. After being home from surgery for about 3 days I had to take her to the ER for emergency surgery - turned out that her colon had developed a small tear. The surgeon noted that it is unusual to see a tear develop on what we estimated to be the 8th day after surgery. Typically, he said, if this happens it is on the 5th day.
(2) Last night as we were discussing her potential release this weekend he commented that her recovery seemed to be slower than normal and speculated that the cancer drug she had been on (Tasigna) may have had an impact on her healing.
Our plan had been to be off Tasigna for 2 weeks prior to surgery, but a last minute schedule change took us into surgery a week early (only one week off of Tasigna).
Tasigna is similar to Gleevec and I have seen comments online about slow-healing with Gleevec. What I have not seen is guidelines on how long to be off the drugs prior to surgery - except that surgeons typically want a minimum of 1 week. But, is this enough?
A comment from the archives (Sep 27 2005, 020401) - Marina Symox, says concerning Gleevec: "Just my lay person opinion, but I think two weeks off the drug before surgery sounds excessive."
I'm thinking that one week may be too little.
David (the caregiver)
11 Jun 2010
Subject: disappointing CT results at MDA
I had my appt at MDA last week and got the disappointing news that I already have new growth. I just had surgery on February 19th to remove growth and already new ones were found. I'll be going to see my local oncologist and surgeon early next week to discuss what Dr. Trent recommended for me. As it stands now -- I'll go for surgery to have my ileostomy reversed next month (something that I had to have done due to complications after the 2/19 surgery) and have these new tumors taken out at the same time. Dr. Trent advised trying Tasigna again (starting before and then after my surgery) for 3 months. He thinks that even thought it didn't work on the larger tumor I had before, it might help stop the smaller ones from growing and also prevent new growth. Then he wants me to come back to MDA around October for a follow up CT scan.
14 Aug 2010
Just letting everyone know that I'll be going into the hospital on Monday, Aug. 16 for another surgery. I was dx with new growth (following a surgery on Feb. 19 to remove some tumors) and by June already had 2 more of these "monsters" growing. I will also be getting my ostomy "taken down" so this will be a very long and intense surgery (I'll be having more of my colon removed but he said that I'll still have plenty left). The surgeon said he expected it to be from 6 to 8 hours in length. He said he's used to doing long surgeries and has had experience in removing GIST tumors (good to know). I've had this surgeon assist in my other surgeries but this is the first time he has been the "lead" surgeon (my original surgeon handed my case to him since he is a surgical oncologist). I feel good about him as he spent 45 minutes with us at the consult detailing the surgery and answering all our questions. So I will be away from this wonderful list for about a week so I'll play catch up when I get home.
16 Aug 2010
Susan underwent surgery today for GIST Tumor removal (two tumors at ~ 4 cm and multiple smaller ones) and ileostomy reversal. Surgery took nearly 5 hours.
Most of the colon (except for the sigmoid colon) was removed as expected. In addition to removing a large portion of the colon, they had to resect the small intestines and removed about 18 inches. Surgery went pretty much as planned and she did not need a blood transfusion.
No epidural was given for post-op pain because of several risk factors. The surgeon said that she was high risk for the procedure, but the anesthesiologist said they would not even consider it. Thanks to all who wrote to her about their experience. In the end, she was relieved to not have the epidural and so she has the morhpine pump.
She is in a regular room and all is going well so far. David (her spouse)
17 Feb 2010
Things are going well. Wen is on Tasigna and is responding well. He began to have less stomach pain and upset after a few days. The past 3 days he has began to behave like his old self. This morning he insisted on cooking breakfast for his parents and I, he said it just felt good to stand over a stove and smell food cooking. So we are feeling really upbeat and hopeful right now. Thanks so much for all of your advice and help. Have a Blessed day, Ivy
1 Mar 2010 Subject: Tasigna
I'm going onto Tasigna and want to learn about your experiences. I have been asked to get an EKG; take the drug twice a day; don't eat food two hours before or after taking the drug; no grapefruit of any sort. In advance, I would greatly appreciate all the advice you can provide.
Have a great day!! Mary
18 Mar 2010
Subject: Got some bad news today -- Anybody using Tasigna with Nexavar?
Hey folks. This is Mary's husband Tim filling in for Mary while she is admitted to the hospital. It looks like Sutent didn't work for the last 8 months (after 2+ years of Gleevec use). She only got a chance to be in Tasigna for 3 days before her large intestine was fully squeezed by the Gist tumor and had to go into the hospital thru the ER. The tumor is wrapping itself around the large intestine now and blockage has occurred, so likely surgery and colonoscopy or ilioscopy is next if operable at all.
Question: Do you know of anyone successful at taking Tasigna AND Nexavar at the same time? we are thinking about how to throw multiple chemicals at it to shrink it and buy some time without rushing into an emergency surgery. Anybody ever "broken" the Tasigna pill casings to sent Tasigna thru a nose feeder tube? (I suspect Novartis doesn't subscribe to this method)
Any info is greatly appreciated. Thank you all and good luck to you as well. Tim and Mary
History: 2006 Sept: Surgery number 1. First time diagnosed with GIST after surgery (Bilateral hypogastric artery ligation and small bowel resection and anastomosis; lesion measured at least 17cm x 17cm x 10cm) and pathology analysis (C-Kit / CD117 positivity; mitotic activity counted at 21 / 50 hpf) 2006 Nov: Started taking Gleevec, 400mg, daily 2008 Dec: Almost cancer free 2009 May: Surgery number 2. Grapefruit sized tumor removed. Pathology results: Mutational analysis reveals normal exon 9, 11, 13, and 17 of the C-kit gene Normal exon 12 and 18 of the PDGRFA gene Melting curve analysis reveals no evidence of mutations in either the C-kit or the PDGRFA alpha gene It is assumed that I am Wild-Type 2009 July: Started taking Sutent, 50mg, daily for 28 days, off for 14 days, then start the cycle again 2010 Feb 5: CT Scan concludes: â€œconsistent with progressive metastatic disease seen within liver and peritoneal carcinomatosis. Doctor wants to switch me to Tasigna I live in the Denver, Colorado metro area and I am told there are no trials available for me to join. As a side note, Novartis has a branch in the Denver, Colorado metro area.
8 Mar 2010
Mary, unlike Susan, I went from Gleevec one day to Tasigna the next, instead of from Sutent. My doctor suggested a half dose for 3 days but by mistake I took half for a week. My tumors are in an area where they can be felt quite painfully if they grow big, and they began to grown in that first week until I had a dumbbell in my lower pelvis with lemons on each end. When I began the full dose, I could actually feel the tumors shrink slightly the first day, and it has continued, though it's by no means so small that it doesn't still cause problems.
At no time have I felt any Tasigna side effects except maybe an increased blood pressure from around 120/130 to 140-something when at the doctor's last. A wonderful decrease in the itching, no rash breaking the skin, unlike with Gleevec. No diarrhea nor the opposite. Dry skin still, but not as thin and not as easily bruised or torn. A huge improvement for me, except for the tumor's effects. But that is the result of Gleevec allowing the growth (probably to just under the size where I felt it, according to the scans) and me not jumping on it immediately with full strength Tasigna.
So far I LOVE Tasigna. Louise, from CT
27 Mar 2010
Here's a happy update. When I'm down, it often helps to hear of others having success, and I know many of you feel the same, based on the notes you post. So, even if it's a bit premature, I thought I'd send my recent good news. (Knocking on wood, literally.)
I took my last Gleevec on Feb. 2 and my first Tasigna on Feb. 3. The tumor that had been growing almost overnight in January, making me extremely "uncomfortable" (in medical-ese) began to shrink. Within 2 or 3 weeks I could tell the doctors at Dana Farber I had felt a definite lessening of pain from both ends of the dumbbell, the internal end and the external. Surgery was postponed while we gave Tasigna a chance. (Knocking again.)
A few days ago, 7 weeks after starting Tasigna, I realized I felt a distinct decrease. My doctors agree we can feel a smaller ball to sit on, to the point where I can manage on normal chairs for a while, although my physical therapist has created two pillows to cushion the tumor and prevent pressure sores. They make a vast difference and the smaller is portable.
To ice the cake, the Gleevec itchy rash and other side effects have faded and for me, Tasigna has almost no side effects: perhaps a little extra fatigue. My doctor has kept a close check on my heart, blood pressure, all that stuff, and I'm doing just fine.
I also believe the hypnosis work I do with my friend, Ginny, a nurse, plus the iguana, Elizabeth, that Susan Farmer sent me deserve credit too. Mind and body, Tasigna and iguana, working to free me of this darn dumbbell. Thank you again to everyone on my team, doctors and friends.
Be well, Louise, from CT
28 May 2010
I've been on Tasigna 4 months and haven't had a rash either. I do have occasional itchy spots on my arms, the same places, but think they're hold-overs from the terribly itchy rash I had all over my body when on Gleevec. The dermatologist gave me a foam to get rid of it permanently but they itch so seldom I keep forgetting to use it. I think heat, whether from the sun or too-warm clothing, sets it off, as it did with Gleevec.
Tasigna has been such a welcome relief from the many intense side effects of Gleevec. I'm under close care by a heart doctor, but the hearts in my family tend to be, well, hearty, so I'm not worried about that problem. And like Susan Farmer, I'm enjoying the sense of well being I feel on Tasigna. On top of that, it stopped the growth of my tumor in its tracks, so I'm a great fan! Louise, in CT
28 Aug 2010
Brenda, I've been taking Tasigna since Feb. 3, and I love it. I have almost no side effects, except the usual fatigue we get from all drugs. Loss of appetite is the only side effect, and I'm sure each of us probably reacts differently to that. After the terribly itchy rashes I endured with Gleevec, it's been lovely to sit in the sun for a little while each day, building up Vitamin D to help combat cancer.
My tumors stopped growing immediately, to the point where the pain decreased enough that we could table an operation. They haven't shrunk, according to the CT scan, but I have another scan in a couple of weeks and am hoping it will show some shrinkage this time.
Meanwhile, there really is nothing to complain about with Tasigna, except my late night snacks have suffered because Tasigna is taken twice a day; it must be two hours after eating, and we can't eat for an hour afterward. Some nights I forget to take it early enough and tend to fall asleep before the hour is up and I can eat again. Quite unusual for me!
Hope this helps in your decision-making. It's always a tough time, isn't it? But so much better than Doctor God days, when we had no say in our care at all.
Louise, from CT
10 Mar 2010
Well my visit with my oncologist to get the reading on my CT scans from last Thursday did not go as well as I had been hoping and praying for but it could have been a lot worse. Over the period of five months the results show a very minor amount of progression. He said that actually you could say I was stable. But...since there is progression and I am on 50MG Sutent he is putting in for a compassionate use of Tasigna. He told me he has more than enough evidence to support the request and is confident it will be approved rather quickly. So it appears I am embarking on a new fork in the road of the journey with GIST. The results really sort of surprised me because I have been feeling better the last couple of weeks than I have in a long time. Go figure.
George in CA
21 Mar 2010
I started taking Tasigna this past Wednesday, March 17th. I have noticed that since then my feet have become really red. They do not itch or anything like that they are just beet red. Have any of you other Tasigna users experienced this phenomenon?
In all fairness I will say that I have experienced no side effects at all with Tasigna unless this is a side effect. I am extremely pleased with it. I have more energy, my mind is more clear, I have been told by a number of people that I sound better when I speak and my blood pressure has returned to almost normal. It is really a blessing to me that within 4 days of discontinuing the Sutent (50mg) my blood pressure has gone down considerably with no medication for it.
George in CA
23 Mar 2010
Wow Jay, I am really sorry to hear about all of the side effects you are experiencing with Tasigna. I feel sort of guilty since I have none. I was concerned about the cherry red feet but I had an appointment with my PCP yesterday in which he looked them over really well. The doctor said that there is no edema or anything else such as a rash but he does think the Tasigna is the source of the pretty red feet. He believes the Tasigna is acting as a vaso-dilator and is causing the redness. I can deal with that.
Actually the biggest "problem" I am having with Tasigna is figuring out how to coordinate taking it and when I eat. For the first few days I had the 2 hours before and one hour after completely backwards in my head. I have not been in a position in my life when I have had to structure either when or what I eat. I think that is the major cause of it. It is sort of like the caution about consuming grapefruit, grapefruit juice or anything with grapefruit I it while taking either Gleevec, Sutent or Tasigna. I love grapefruit and especially grapefruit juice. There is a brand to there called Ruby Red and Tangerine. Each time I go to the Grocery store and pass by the fruit juice section I get an incredible craving for grapefruit juice, which is for me the new forbidden fruit.
George in CA
19 Apr 2010
Have any of the other Tasigna users on the list had any experience with night sweats? I am really experiencing full-blown night sweats every single night. I wake up soaking wet, not just damp but dripping wet. I am going through 2 - 3 t-shirts a night. I have only been experiencing these since I have been in Oregon. I set about to try to find out what the source of the problem is and to eliminate environmental possibilities such as a different type of mattress, etc. When I could not find a source or a culprit in the problem I consulted the monograph that comes with Tasigna. Lo and behold night sweats is listed as one of the posible side effects and was apparently fairly common in clinical trials.
If any of you have had any experience with night sweats and my have any ideas or suggestions as to how to control them I would appreciate hearing about it. If you have not had any experience with night sweats count your blessings! This is not a fun thing to deal with. As I said I have to change t-shirts often. Last night I tried sleeping without one and all it did was make the sheets wetter. The sheets get so wet it is either change and wash them every day or leave the bed unmade so it can dry out before I make it.
George in CA
20 Jun 2010
This is the new bride of George G.
Please be praying for George... one of the tumors ruptured and he has had surgery to remove the tumor. He has been in the hospital since Wednesday.
The family appreciates all prayers, thank you.
28 Jun 2010
Chris and all, this is the first time I have been on the computer for quite some time. As my wife mentioned I had one of the tumors in my abdomen rupture. What an incredible journey I have been on for the last 3 weeks. I almost left the group unwillingly.
I went through so many tests and things it was scary. It all got to the earnest stage on June 9. That day I had my normal CT scans. The next day it was doctor, then it was blood work. Then on the Monday following it was back for a reading on the blood work when I was rushed over to the hospital to get and acute abdominal set of x-rays. The next day it was a reading on the x-rays which was inconclusive. Then on Wednesday of that week (I think it was the 16th) I was back at radiology getting a small intestine study done. After drinking a 600ml bottle of the really, really strong goop the radiologist came in and started using some kind of tent and camera thingy. He is a friend of mine and almost immediately said, "There it is George, can you see it?"
What had happened was one of the tumors in the abdomen was pushing up against the small intestine is such a manner as to create a blockage of the intestine. I had been extremely bloated, gassy and in incredible pain for about 2 weeks to that point.
After I got home within an hour I started vomiting. All of the Barium Sulfate I drank could not pass the kink in the intestine. That is when things got really serious. I was in such pain I passed to while sitting on the toilet. Here's one you can tell your kids or whoever: when I passed out I landed right in the kitty litter box! (Fortunately it was clean.)
Anyway that caused a code 3 ride to the ER while under 10mg of morphine I hurt so bad. Sometime in the next couple of days I had surgery. I am not clear of the time frame but it was from the 16th to the 18th of June. I will find out more on Tuesday when I see the surgeon. The next morning in the CCU IO had two doctors tell me they did not expect to see me that morning. The surgeon said he had never seen so much cancer inside a person's belly before and did not understand how I was still alive. (Simple, one word: GOD)
So after 9 or 10 days in the hospital I was discharged this passed Thursday evening. I am getting gradually better but have been fighting a low-grade temperature for a while now. It has not gone over 100.8 but it is annoying. I had a doctor tell me it is probably what he calls a tumor fever. Again when I see my oncologist next I shall ask about it.
Oh, the thing that actually put me in the hospital is that one of those little (or not so little) buggers decided to rupture inside my abdomen. I have read here before about people with perforated, burst, ruptured or whatever term you want to assign to them, tumors. It Is not fun believe me.
So for now I am home and trying to recover. I have so many doctors to see. My goodness the morning I was In CCU I had no less than 5 doctors going over my case!
Incidentally since this is now the morning and it is basically a new message I believe the biggest pleasure I am going to have is getting all the metal clamps out of my belly tomorrow. My goodness they can cause problems and severe pain! I think I have at least 18 of them.
George in CA
3 Sep 2010
Subject: Scan Results
Yesterday evening was an especially wonderful time for my wife and I. My oncologist works until 7PM on Thursday so my appointment was not until 5:30. I should have known something was up because he had a huge smile on his face when he walked in and we right away lapsed into small talk instead of discussing my scans of last Friday. I do not mind that because my doctor is not only a marvelous physician he is a really nice man.
Anyway, Praise the Lord my scans show that all but 2 of my tumors are reduced in size and those two are stable. My oncologist said that since two are stable we actually have to attach the label of "stable" to the whole package since two have not shrunk. What an incredible difference from almost dying in the ER exactly 10 weeks ago today to being told I am stable.
I could not contain my exuberance last night. From the very moment he used the "S" word until about 2 hours later I was in tears of joy. My wife shared in the joy as well as the tears. We decided it was like getting a new lease on life. Perhaps that is going a bit overboard but to me it fits.
It is so good to be able to come and share some good news with you all this morning. (By the way I am currently on Tasigna 800mg taken at 400mg twice a day.)
George in CA
23 Mar 2010
Geroge, I'm taking Tasigna. Was at 800mg per day, but recently cut back by oncs to 400 per. Elevated bilirubin levels the big reason.
When I started taking it, in December, I had horrible itching. Literally couldn't put head on pillow for the intensity of the sensation once scalp hit cloth.
Very dry skin, now. Some nausea. Since last surgery--though not whole time--have gastroparesis: stomach not emptying. Odd because this was the only one of my surgeries that didn't require a stomach resection.
Dr DeMatteo did take a small piece of pancreasand some diaphragm that tumor was lying against.
The stomach emptying issue showed up on halloween, for some reason. After a miserable November, seemed to be getting a little better, but now that I know it's a prob, my conscisouness of it seems to make it worse.
Working through it all. Not sure if Tasigna is making it worse or not, but it's pretty strong. Liver is stressed. Hoping the smaller dose will do just as well as stronger.
Last scan, on 2/16 was clear. Hoping to get to three straight.
Then, to infinity and beyond! I hope. Jay
13 Jul 2010
Just thought I'd keep people in the loop here. Have three tumors: one anterior to greater curve of stomach; one near point of incision of last three surgeries, which also seems to have pulled off the neat trick of pinching off small bowel, so that I've been in hospital all of July with bowel obstruction or NG tube to alleviate said; and one in center of peritoneum, may be near pancreas. Hope not.
Am having surgery at Johns Hopkins with Dr Timothy Pawlik, Surgeon on #s 1, 2. Dr. Ronald DeMatteo did surgery #3.
Just a heads up. Thanks in advance for all well wishes. Jay
30 Jul 2010
Update on my surgery/recovery by Jay Hepner
Surgery was 7/15/10 by Dr Timothy Pawlik, whose done 3 of my 4. Ronald DeMatteo did number 3.
So, a couple weeks ago, I wake up in ICU at Weinberg Cancer Center at Johns Hopkins Hospital. And I'm out by 5 pm. having walked 4 laps around the unit before getting kicked upstairs to 4th Floor, standard recovery floor.
I'm still carrying my PICC line, as one of my tumors has twisted my small bowel and I can only throw up without an NG tube, which I have from 7/8 till 7/17, but the vomiting began on 7/1. What's a week of misery? And weight loss of 15 pounds?
So, I'm in recovery at HopkinsWeinberg till tues, 7/20, when I'm sent home with a prescript for delaudid.
Biggest incision of all surgeries. Splenectomy. Resect of small bowel. removal of 90-95% of all GIST tumorage. Not all.
So, just got on Gleevec again, in order to be on SOMETHING, as opposed to last post-surgery, when I was on NOTHING for nearly 4 months.
But Gleevec seems to have lost its effectiveness on me.
Wondering what's next. My onc at Hopkins, Dr Luis Diaz is referring me to Meg von Mehren and someone at DFCI, whose name I'm barely remembering.
Read about a regorafenib clin trial, may want to get on that.
Tired of GIST.
Anyone with contacts at DFCI, please pass along.
Feeling a little better, but wish I felt more optimistic. 4 surgeries in 2.5 years . . . not exactly what I had planned.
Did I miss anything?
29 Aug 2010
Brenda and Gary in Illinois:
I was on 800 mg Tasigna from 12/15/09 till mid-March or so 10, when my oncologist at Hopkins, Katherine Thornton advised dropping to 400 mg.
The problem was elevated bilirubin numbers, a harbinger of liver malfunction/stress. There was another elevated count of significance, but I can't recall, which is not like me. The bilirubin was the salient issue.
When I was on the 800, it was 14 doses a week of 400 mg. I would sometimes only take 13, as I found Tasigna pretty harsh. Initially, it caused an itchiness in my scalp that made it intolerable to lay my head on a pillow. Really was uncomfortable to lay my head on a pillow, so much so that it kept me from sleeping when I was tired.
Also was suffering from gastroparesis post-op 8/27/09, making absorption of the doses questionable to begin with.
Vacillated back and forth on Tasigna from March through June, usually taking it one 400 mg dose upon waking, as it needs to be taken fasting, unlike Gleevec which you're supposed to take with food.
Haven't taken Sprycel (dasatinib), but Dr von Mehren thinks I'll be on that next if Gleevec, which I'm back on post-latest surgery 7/15/10, 400 mg, doesn't work.
Next scan is October 14ish.
Jay in MD Called Doc 11/06 Dx 8/07 Gleevec 9/07 - 1/08, surgery 1/08 Recurrence, surgery 8/08; Gleevec 400mg through 6/09 Recurrence 5/09, Gleevec 800mg through 7/09, Sorafenib 8/09, Surgery 8/09 No meds 9/09 - 12/09 Tasigna 12/09 - 6/10 Recurrence 5/09, surgery 7/09, Gleevec 400mg
25 Sep 2010
Subject: Jay H
I am saddened to say that my brother, Jay Hepner, is losing his battle with GIST. It's now a matter of hours. One of the tumors has grown in the past two months since his last surgery in July. The tumor is like concrete and has pushed into the stomach and pressing on the chest. It is in the lower-left-hand quadrant of the abdomen, 2/3 of the left lower lung has collapsed. We are at Johns Hopkins and Jay is in the ICU. He was admitted last Saturday, September 18, with problems keeping food down and bringing up blood. Things have spiraled out of control as of late last night and early this morning. I will post something about funeral arrangements. They will be an obit posted in the Washington Post.
26 Sep 2010
My friend Jay is gone.
For those who have Facebook accounts, this was set up. He was a young, gentle, positive guy who had very aggressive GIST and strong will to fight it. I am so sorry for all who loved him, and even for those of us who just liked him a lot. It's a sad day, the world lost a good man.
We are saddened to report that Jay Hepner passed away on Sunday, September 26 around 2:00 pm. Please post your thoughts and photos so that we can remember him.
28 Mar 2010
Subject: My husband has failed Gleevec, Sutent, Nexavar, and now Tasigna...
I have been reading here for some time, but this is my first post. My husband, David has been in this battle for 6 1/2 years, and it has been a constant up and down road. There have been 4 surgeries, and now 4 therapies. Each worked for a short while. We found out on Friday that the latest, Tasigna has failed. He has Exon 11 which started on the outside of the small bowel.
It is now all over his abdomen, in the mesentary, and also in his liver. We are in Nashville, and his oncologist has had only a few gist patients...David is his first to fail all therapies. I guess that it is time to go to a Gist Expert, or have we waited too long? It seems to me that the STA 90-90 phase II trial may be a possibility. I plan to make a phone call tomorrow.
The whole idea of traveling so far is overwhelming...neither of us has ever been on an airplane. I suppose that we will figure it all out if any of this is a possibility for him. He is at the moment stable and pain free thanks to a pain patch. Any ideas, suggestions, input, etc. would be so appreciated. He is so not ready to give up...we have 4 adult children and their spouses and 4 incredible grandbabies- except for the gist life is grand, grand, grand and grand!!!
8 May 2010
Merv's ctscan at MDA on Thursday showed slight growth (by mm) of the 2 small liver mets (1-2cm) and no improvement in density. Merv has been taking 50mg of Sutent daily continuously. Dr. Trent says its time to talk to a surgeon (I think Dr. Abdalla) about liver resection. We should hear from him next week about feasibility and options re. surgery. Meanwhile Merv is switching from Sutent to Tasigna.
Dec 2004 - Diagnosed with primary stomach gist, 7cm, exon 11, 2/50hpf at age 54
Feb 2005 - Primary resected at MDA - Removed 1/2 stomach, spleen, adrenal gland, tail of pancreas, plus bits of esophagus & diaphram - Clear margins, 7+ hour surgery - Off work for 7 months post surgery, but working full time since then.
Feb 2005 - Feb 2007 - 2 years adjuvant Gleevec at 400 (though took several months to get started due to recovery).
Feb 2007 - Feb 2008 - 1 year NED, until 1 cm met showed up in Liver
Feb 2008 - Jul 2009 - Approx 18 months on Gleevec at 400mg, raised to 600mg, another 1 cm liver met showed up.
Jul 2009 - May 2010 - Approx 10 months on Sugent at 37.5mg, raised to 50mg, showing slight progression.
May 2010 - Looking into liver resection and switching to Tasigna
Carol Wife of Merv
28 May 2010
I had tumor growth so I am on Tasigna now and hope it will work for me. Would have done Sutent but Trent was concerned about hand and foot syndrom since I had those issues with Nexavar. I will certainly give Sutent a try if Tasigna is a no go. I am running short on options. I asked Dr Trent about HSP90 and he said the had a trial but it is infusion weekly in Houston. That would be a pain but as he said I guess you would be willing to do it is necessary. Of course I agreed. Well we will know something in 60 days. John B
22 Jul 2010
Subject: Re: Started Tasigna tonight
I was on it for 60 days and felt better than I had in years but unfortunatley it did not stop my tumor growth. Start Sutent tomorrow. I hope you have great results with it. John B
22 Jul 2010
I've been off living life and ignoring my GIST while I've been on OSI930. Had a CT on Monday, showed 19% growth. Not enough to d/c the trial, but the stress of making trips for trial visits were also really making life difficult for me when combined with my other life circumstances.
So, today I started Tasigna (400 mg twice daily) and for some reason am feeling very anxious about it. Must be a weak moment for this soldier/pioneer/old lady, I guess.
I was hoping to get feedback from you wonderful folks regarding others experiences with this drug. The information packet is enough to scare the socks off anyone! :)
Thanks and blessings, Brenda