GIST Support WikiThis page is for information related to Sorafenib (Nexavar) (formerly BAY 43-900), 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.
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[edit] Basic Information
Manufacturer: Bayer and Onyx
For information from the manufacturer link here.
Molecular Targets: oral multikinase inhibitor that blocks the RAF kinase and VEGF receptors 2 and 3 to target tumor cell growth and angiogenesis, as well as PDGFR-B, KIT, FLT-3, and RET
Trials: Phase II - currently recruiting patients. See this link for information. A preliminary report of promising early results from this trial was presented at the ASCO GI Cancers Symposium in January 2008, as detailed in this news story on GSI's site.
GIST Support International website page: link here
June 2007 Sorafenib Inhibits Imatinib-Resistant KIT and Platelet-Derived Growth Factor receptor {beta} Gatekeeper Mutants. Guida T, Anaganti S, Provitera L, Gedrich R, Sullivan E, Wilhelm SM, Santoro M, Carlomagno F.
PURPOSE: Targeting of KIT and platelet-derived growth factor receptor (PDGFR) tyrosine kinases by imatinib is an effective anticancer strategy. However, mutations of the gatekeeper residue (T670 in KIT and T681 in PDGFRbeta) render the two kinases resistant to imatinib. The aim of this study was to evaluate whether sorafenib (BAY 43-9006), a multitargeted ATP-competitive inhibitor of KIT and PDGFR, was active against imatinib-resistant KIT and PDGFRbeta kinases. EXPERIMENTAL DESIGN: We used in vitro kinase assays and immunoblot with phosphospecific antibodies to determine the activity of sorafenib on KIT and PDGFRbeta kinases. We also exploited reporter luciferase assays to measure the effects of sorafenib on KIT and PDGFRbeta downstream signaling events. The activity of sorafenib on interleukin-3-independent proliferation of Ba/F3 cells expressing oncogenic KIT or its imatinib-resistant T670I mutant was also tested.
RESULTS: Sorafenib efficiently inhibited gatekeeper mutants of KIT and PDGFRbeta (IC(50) for KIT T670I, 60 nmol/L; IC(50) for PDGFRbeta T681I, 110 nmol/L). Instead, it was less active against activation loop mutants of the two receptors (IC(50) for KIT D816V, 3.8 mumol/L; IC(50) for PDGFRbeta D850V, 1.17 mumol/L) that are also imatinib-resistant. Sorafenib blocked receptor autophosphorylation and signaling of KIT and PDGFRbeta gatekeeper mutants in intact cells as well as activation of AP1-responsive and cyclin D1 gene promoters, respectively. Finally, the compound inhibited KIT-dependent proliferation of Ba/F3 cells expressing the oncogenic KIT mutant carrying the T670I mutation. CONCLUSIONS: Sorafenib might be a promising anticancer agent for patients carrying KIT and PDGFRbeta gatekeeper mutations.
[edit] Comments from Trial Participants
[edit] Michele S
17 May 2007
Subject: Sorafinib trial
Hello everyone,
I haven't posted since the end of April when I told you I was going to have to start a trial. A lot has happened since then and I don't know what is going on with everyone since I am so behind on emails.
I made my decision to start Sorafinib at City of Hope a few weeks ago. I was supposed to start it this week. Right after I had made my decision about the trial, I left to go on a week long retreat. After 3 days on retreat I was having increased pain and swelling in my legs. I went to ER and found my blood levels way down from 5 days ealier. They gave me 2 units, which brought my levels up. They couldn't pinpoint the bleeding on CT scan, but decided it was in the liver because they didn't see free blood in the pelvis. I was transfered to City of Hope and monitored until my blood levels became stable. No surgery was performed this time. (Previously in Dec 2006 I had surgery to stop a liver bleed). I came home on Tues this week. I have been in a lot of pain around my liver and abdomen and back, but controlling it with pain meds which of course makes me constipated and causes more pain. I think it is more under control now though.
I couldn't start the trial this week because my white cell count is low, so I go back on Monday for another blood test, and if the levels are good I can start the trial next week.
I chose the Sorafinib trial over IPI 504, which has started in Santa Monica, becuase if I fail Sorafinib, I can still qualify for IPI, but if I do IPI first, I won't qualify for Sorafinib.
I will try my best to keep you all posted about the trial. Please keep me in your prayers. All of you are in mine also.
God Bless, Michele, Ventura
28 May 2007
Subject: Sorafinib trial
Hi all,
I started the Sorafinib trail at COH on Thursday. So far I have had just a mild amount of sorness on my finger tips and toes. Also, the pain I have been having since my liver bleed May 9th, has decreased, and the swelling in my legs and hips is gone. I don't know if those things are due to the medication, or I am just getting better from the bleed..
The protocol for this trial is I take 2 pills in the morning (400mg total) and 2 pills in the evening (400mg total) with an 8 oz glass of water. I have labs and vitals weekly the first month and then every 2 weeks after that. I see the Dr. two times the first month, then once a month after that. CT scans are every 2 months.
The side affects are supposed to be similar to Sutent side affects.
I will keep you updated.
June 7, 2007
Today was day 15 of the Sorafenib trial. I went to COH for lab work and a check. My blood levels are all good. After I started the trial I started to feel better after about 2 days. My liver pain subsided and my distended stomach improved. Most days I felt much better, but some days I felt achy and very fatigued. Other side affects I am having include sore feet and hands and mouth. Sore scalp. Red rash on my cheeks. Eye lashes and brows turning white. Fatigue and achy at times. I will have my first CT scan about July 5th and see the Dr. for results the following week.
24 Jul 2007
Marina,
Thanks for your response. I don't have a recliner, but I may need to get one or borrow one. Another thing I have been using for the pain is a heating pad. It helps temporarily. As much as I want to believe I am stable, it just makes no sense when I feel this way.
My next thoughts were to try to get compassionate use of AMN 107, but I know that often takes a lot of time, and I don't know if I can afford that. The other option for me that is high on the list is the IPI 504. It is in Santa Monica now, and only an hour drive from my house. That is the one Dr. Blanke recommended in April, but it was only in Boston and on the east coast at that time.
Michele
24 Jul 2007
I know it is very rare, but I had a primary stomach and I am an exon 9. My Testing was done at OHSU.
Michele
5 Aug 2007
I Wrote a few weeks ago with the news that I appeared to be stable on the Nexavar, but that I was not convinced of stability because of my increased pain and symptoms. I went to see Dr. Blanke on the 26th to confirm these results. He aggreed with the COH trial Doc, that I am stable and to continue on the trial. That as quite a relief, but still difficult to believe when I feel so bad. So, my local onc and I have been working on trying to get my pain under control, and at times I have done better.
Right after we got back from Portland, however, we left the next day for a family reunion with just my immediate family. The traveling did a number on my digestion and the constipation got bad again, so I have been trying to get that undrer control. I use milk of magnesia at least 2x per day, I eat small meals and try to drink a lot of water. The biggest problem is still the pain at night and not sleeping well. The doctor increased my pain meds that helped a bit, but still not good.
It was great to have my family all together though. My 30 year old daughter is leaving today to go home to Boise. She is a teacher and was able to come and stay with me for the past 6 weeks, which has been wonderful. I will really miss her a lot.
22 Oct 2007
Subject: lost a dear friend
With a heavy heart I want to let everyone know that my dear friend Michelle Scheiperpeter at 10:30 last night lost her battle with courage and integrity to Gist. Michelle you will always be part of my life. I will miss you.
Her husband Carl their 2 children Jason and Naomi and family were at her side. My thoughts and prayers are with you all. Love Tania
[edit] Tom
OCTOBER 7, 2007
Hi Everyone,
Dad had a tumor removed from his abdomen back in 2001 and they had to take part of his small intestine. After the long wait for a diagnosis, (because sections of his tumor traveled the country from what we hear in order to get the diagnosis), it mets'd to the liver. Just in the nick of time Gleevec became available and he was started on that. I don't remember exactly how long he was on Gleevec before it failed, but it was just in time that Sutent was approved for GIST AND I believe he was on Sutent Less than 2 years.
My dad is now in the Phase 2 Study of BAY 43-9006 for Patients with Imatinib (Gleevec) and Sunitinib(Sutent)-Resistant GIST in Chicago. He started the trial in May 2007 with his first CT being on 05/26/2007. He had a CT on July 25 which showed interval decrease in size of many of the previously noted bilobar hepatic mass lesions. We will be going to Chicago October 9 to get the results from his latest CT done on September 30. We are praying and hoping to have good results Tuesday.
Dad has had SIDE EFFECTS FROM the Bay 43-9006. The side effects for him have been blistering of the fingers and toes, which was quite painful; and very high blood pressure, which he was already on 3 or 4 blood pressure medications before the BAY 43-9006. His initial dose was 200 mg pills, taking 2 pills twice per day for a total of 800 mg a day. This dose has been decreased 2 or 3 times and he is now down to taking only one 200 mg pill per day, and when his b/p gets too high they stop that 1 pill per day for a week until his b/p goes back down.
Written By Cheryl, daughter of Tom
[edit] Dave B
Dave was on AMN107 trial prior - see AMN107 page
20 Oct 2007 Subject: Re: Nilotinib AMN-107 Clinical Trial
I'm taking Nexavar for now, not part of any trial. It works for other specific cancers (kidney, I think) and it's being used in concert with another drug at Sloan-Kettering in a trial that I didn't qualify for. The trial was for Gleevec / Sutent failures, I'm a Gleevec / Sutent / Nilotinib failure. Go figure!
My insurance carrier, (#8@&*#@!!!) Independence Blue Cross, denied my attempt to go out of network to Sloan-Kettering for a more chemo oriented trial using Doxyrubicin and Flavopiridol. I'm in a sort of holding action right now- hoping for Flavopiridol, Nexavar combinations, or the next miracle drug to come along.
Dave
15 Nov 2007
Subject: Re: Nexavar and Rapamune
I've been taking 800 mg of Nexavar a day for six weeks now- 400 mg (two 200 mg pills) in the AM and 400 mg (two 200 mg pills) in the PM. It's the same as a Gleevec dosage. Two hours after or one hour before eating.
Side effects have been swollen feet, diarrhea, and elevated blood pressure. Good side effect is that my liver is softer and less sensitive to touch. (No CAT scan reports until early December).
No Rapamune or Avastin.
Doflap65@AOL.COM wrote: Hi Folks, I was wondering if any of you other Gisters have tried Nexavar in combination with Rapamune or Avastin, I have searched the archives and can only find one person that has tried this, But there is no mention of dosing.
16 Dec 2007
Subject: Re: Nexavar side effects
Carrie,
Try Konsyl natural fiber supplement. It worked for me. I have the same problem with Nexavar (diarrhea was so bad).
Dave
6 Jan 2008
Subject: Re: sorafenib or AMN107
I know only of my personal experience.
Poor response to AMN107 in a six month stage II trial at FCCC early last year. Almost 20% tumor growth in the first 3 months including a new site on my left ventricle.
Better response to Sorafenib- some growth from June to December but at a much lesser rate.
21 Feb 2008
Bob,
"Rarely" doesn't mean much to folks who do get metastatic sites at the places you mention.
I had small liver sites from the beginning that grew into big ones in the years following my initial surgery. One was removed surgically and several were removed with radio frequency ablation. There are about a dozen large ones now. I also have a tumor that developed on my left ventricle in the last year. I have several small but growing sites on my lungs that we've been tracking for about two years. There was also a possible site in my upper thigh muscle on my last PET scan that may or may not be a real thing.
Whether or not these secondary sites are GIST metasteses or something else is irrelevant at the moment. The known GIST sites on my liver have to get treated immediately so that's what I'm doing.
You're certaimly right about getting qualified second (and third) opinions.
Dave
28 Feb 2008
I'm entering a phase II trial of Biogen's BIIB021 HSP 90 Inhibitor at MSKCC
Dave started BIIB021 - see corresponding page
[edit] Harold G
Harold was on AMN107 prior (see AMN107 page)
29 Oct 2007
Subject: My dad - Nexavar
Just wanted to give an update on our time so far with Nexavar. A little about the process. My dad did not qualify for the current trial at Sloan which I was happy about because we had no time to wait. When your dr. contacts the Reach program (they handle dispensing the drug for Bayer), which is the only way to get Nexavar for GIST, you start an application process. They contact your insurance company who will most likely deny the request, that has to be returned to Reach in writing, then Reach appeals to the insurance comp. again usually denied, then they figure out how much will be paid by you for the drug. We submitted my mother's income information for this process and fortunately during the whole application process, Reach was sending my dad the drug for him to use.
He has been on it for 5 weeks and about a week ago we started to see improvements in his general strength, though he is also on Ritalin. He is still very thin, at most 120 lbs. but he is walking without the unsteadiness and falling that was happening in the past few weeks. He's up and around more, sitting up reading which he has not been doing and his voice sounds stronger. We are hoping for shrinkage with this drug even though the developer told me that it was more likely to just kill cancer cells from within than to cause shrinking of the actual tumors. But GIST is growing on my dad's spine and the oncologist warned if it continued, he could soon be paralyzed.
So here we are again at a place of growing hope and praying hard, still grateful for the time.
Thanks Carrie P Daughter of Harold G (diagnosed 6 years ago this month)
17 Nov 2007
Subject: my dad on Nexavar- 7 weeks
Just an update, my dad, Harold Greene, was going down hill fast and we got him on Nexavar about 7 weeks ago and he is night and day better for the past 3 weeks, just keeps getting stronger, despite diarrhea and weighing about 116 lbs. He has tumors in his back that just 8 weeks ago they told him what we needed to watch for as signs of paralysis because it was encroaching in his spine. His back has stopped hurting and he is doing well - he and my mom will celebrate their 50th wedding anniversary in 3 weeks so we are very grateful. He is starting special medication today for the diarrhea and he is on an appetite aid as well. Hopefully the appetite aid can help when we beat the diarrhea. We are grateful for a very Happy Thanksgiving because he is still here 6 years after being given 2 months to live.
16 Dec 2007
Subject: Nexavar side effects
My dad has been on Nexavar for 3 months and debilitating, painful diarrhea. None of the prescriptions that the oncologist has tried to control it have helped at all. Any ideas? He is very weak again and not getting much sleep because of this. He had been getting better, stronger and gaining a little weight before this started about a month ago. They did a colonoscopy to see if he had any infection or anything else that might be causing this. No answers there.
Thanks
Carrie Porter Daughter of Harold Greene Diagnosed 6 years ago this Oct.
28 Jan 2008
Subject: Update on Harold Greene
I haven't been able to post in a while, my dad started Nexavar about 4 months ago, was on an uphill swing, seemed 60-70% stronger, then uncontrollable diarrhea completely wiped him out.but the bigger problem was it caused a fissure and as the dr just said "Olympic sized hemorrhoids" , lost a lot of blood. After waiting since before Christmas (6 weeks) hoping it would heal, they did surgery this past Friday and gave him 3 units of blood but he is just skin and bones literally. He is very weak, though now in less pain, and has barely been able to talk since November because he is so exhausted, doesn't sleep etc.
They have not scanned yet mainly because they can't make him drink that stuff and totally mess up his stomach on top of these problems. I'm rambling..
Thanks Carrie Porter Harold Greene's daughter He was diagnosed Oct 2001
14 Feb 2008
Subject: update on Harold Greene
My dad had surgery for the fissure caused by the diarrhea caused by Nexavar and now they tell us the drug is not working and they are not putting him back on it after the hospital stay - they have called in a hospice nurse to help my mom...
Any ideas from anyone - unfortunately I'm no help because I am in Michigan waiting for a bed to open up at the headache MI Headache and Neurological Institute in Ann Arbor/Chelsea.for the next couple weeks.
Thanks Carrie
14 Feb 2008
Hi Again,
This is bothering me more that I don't understand that my dad was better 2 months ago then the diarrhea but it stopped and I thought we just needed to fix the fissure and he would be better again because he was so much stronger right before Christmas about 2 months into the Nexavar..they did the scan w/o contrast last Friday night looking for an intestinal blockage, found none but they had to solve a constipation problem after the fissure surgery.now the oncologist tells my mom Nexavar is not working and he is away for two weeks - not that I can get back there to talk to him anyway..
Thanks Carrie
10 Mar 2008
Subject: Passing of Harold Greene
Hi All,
I've read a lot of these unfortunately over the past 6 years of our GIST fight and dreaded writing my own but my dad Harold R. Greene died this past Thursday night, March 6th. He had been going down hill for the past 5 weeks, he had gone to the hospital last Monday where they put him on morphine and he was comfortable. I'm grateful it was a short time because my mom was living at the hospital with him 22 hrs a day.
I cannot say thank you enough for all the good thoughts, advice and medical information over the past few years. Thank you for helping me locate new drugs and for helping me navigate how to acquire them.
Thanks again,
Carrie Porter
Daughter of Harold Greene diagnosed Oct 2001
[edit] Elaine
13 Feb 2008
Well,Elaine and I are back from New York.
Our appt with Dr. Maki went well.
He answered our questions,and I was impressed that he had a plan for her. She will stay on Nexavar and we will see how it is working when she has her next scan in March. At that time he may add in Rapamune. I asked him the dosage. He said he will use a loading dose and then decrease it.
He added in labs and will test for anemia. He seemed to think intraveneous iron was best. Has anyone ever had that?
He suggested we see a sarcoma surgeon at Emory to bring him up to date on Elaine's experience with the bleeding tumor two years ago,so if she gets in an emergency situation he might be able to remove the bleeding tumor.
We talked about what we would try if the Nexavar/rapamune didn't work and he mentioned traditional chemo drugs. I thought that they were of no use to GIST.
We also talked about the IPI504 type drugs. He realizes she would have to get in one near home as travel is hard on her.
We made an appt to come back in eary April.
He will fax the blood results and letter to Dr D'Amato. He knows her,likes her,and feels they will work well together on Elaine's case.
So I left feeling reassured,and I am definately glad we went.
Marilyn(Elaine's sister)
2 Feb 2008
Subject: Emma Elaine Martin Update-large tumors and getting anemic
After about ten days we finally got Nexavar. It took Bayer that long to get it approved by her insurance, but her plan D Medicare did approve it in full.
She had only been on it one day when she had her scan. As compared to her scan November 20th(2 months ago), all of her many tumors have increased in size.The two largerst are 16cm x 13.8 and 10.5cm x 10cm. The big one show s necrosis in the center. These are in her abdomin,and she has more in her pelvis. Despite this she continues to feel well ,has an appetite,and is active.
She complains of being tired and her hemoglobin is down to 10.8.
We plan to visit Dr Maki in New York in two weeks. I will see if they can recheck her labs and possibly give her a shot to help the hemogolbin. In the mean time I have told her to start eating red meat again,(she had stopped ), and spinach. She also drinks two protein ensures a day, so this should help. I hate for her to take Iron ,as she might get constipated. Fortunately her appetite is very good and her weight is up.
We saw Dr D"Amato briefly. She will take over my sister's case from Dr. Saba. We should have the best GIST specialists for her,so I do not know what else to do.
Perhaps Dr Maki will add Rapamune to the Nexavar when we see him.
Marilyn sister of Emma Elaine
2 Feb 2008
From: Marina
Hopefully, Nexavar will work. THe abstract for Nexavar presented at GI ASCO looked promising...about three quarters of pts benefitted with a median time to progression of 13 months. That is pretty impressive, I think.
5 Feb 2008
Subject: Pain Now!
My sister is beginning to feel pain in her left side(where she has a 10cm gist) as well as her right side (where she has a 16cm gist). The pain is not constant,but she is getting uncomfortable.
She has been on Nexavar one week. This is the first she has compained of discomfort.
I am really worried about the right side tumor(16 x 13.8cm) in her abdomin ,as it is necrotic in the middle. Two years ago she was hospitalized with a bleeding tumor which was breaking apart,and I am fearful of this happening again. At the time ,after draining the tumor, Dr DeMatteo did surgery. At that time she had only one tumor,but now she has many. He is quite definite about not doing surgery NOW,and I hate to take up his time.I had planned on canceling the Wednesday appt with Dr DeMatteo and just seeing Dr. Maki on Tuesday. Then coming directly home Wednesday,but perhaps we should see him anyway.
I really am fearful about making the trip at all,but she wants to go so badly,and Dr. Maki might have some suggestions such as adding rappamune to the Nexavar.
Please pray that we can make this trip safely. She also has seizures which is a complication of travel. Luckily my husband will go with us ,so we will not be traveling alone.
Does anyone know of anything at this time ,which she can take to make her more comfortable? Two years ago she could not eat very well,but so far her appetite is fine. Marilyn
7 Mar 2008
Subject: Nexavar side effects
Can anyone tell me what the side effects of Nexavar are? My sister has been having diahhrea, and I am wondering if this is what has caused the low potassium. Has anyone else had this side effect,and what did they do?
Should she take immodium. Before this Nexavar, she had to take Miralax twice daily to keep from constipation. Marilyn sister of Elaine
7 Mar 2008
I had very bad diarrhea, increased blood pressure, thick painful callouses on the bottom of my feet and some lost appetite when taking Nexavar.
Konsyl fiber supplement fixed the diarrhea problem for me. Dave
March 25, 2008
Nexavar working but weight is down!
The CT results for my sister showed that the tumors are not progressing and are beginning to shrink(die)on Nexavar. I wish we had started it sooner and just skipped sutent,but it is such a guessing game what will work.
I was so happy ,but surprised, since she has lost 8 poinds in one month. Dr D"Amato told her to think of food as the same as taking the Nexavar. She must eat like every day is Thanksgiving. Food must be her drug. I guess Nexavar has decreased her appetite,but she promised to eat more.
By the way! I think that Dr D'Amato is just great. She is so upbeat and caring. It is wonderful to have her as my sister's doctor. We both just love her.
Marilyn
25 Mar 2008
Subject: Elaine Martin"s scan
I am happy to report that Elaine's scan results,after two months on Nexavar, showed no tumor progression. Dr. D'Amato showed me the comparison to her last scan ,and she actually measured shrinkage and more tumor necrosis.
It appears that after failing gleevac and sutent the nexavar is holding the tumors in contoll. Yea,we are both so happy!
Marilyn(sister of Emma Elaine Martin) GIST removed from small intestine in 2003,and in 2006. Multiple metastic disease in 2007/08. Finally tumors are not growing for once.
30 Mar 2008
Subject: Never give up the fight!!!!
Nexavar(off label )is working right now for my sister. It took about 10 days for the insurance company to decide about covering it,but in the end they did. Dr Maki did not want Elaine off sutent(even though it was not working) until she started Nexavar. I guess it was working a little. If Nexavar begins to not work he plans to add Rapamune.
I am hoping that it will work, at least be under contol, until Dr D'Amato gets her trials(heat shock) going,since my sister has epilepsy and is in a wheel chair it is difficult for her to travel on a regular basis.
The good news is that taking Nexavar will not keep her out of future trials.
Fighting GIST is definately a battle that one must wage with surgeries,new meds, and whatever it takes until the cure is found.
Never give up! A cure might be just around the corner.
3 Apr 2008
Hi Kay, We live in Atlanta and see Dr. D'Amato, however, we also see Dr Maki in New York. Dr Maki is the one who prescribed it.
My sister is exon 11(at least her original tumor was). Sutent did not work at all. My sister's original GIST was attached to the small intestine if that matters. Most oncologists are familiar with Nexavar, as it is prescribed for kidney cancer,so actually you are getting it off label. Luckily medicare covered it.
Perhaps Marina or someone knows of a study done on it for GIST. I believe Dr Demetri in Boston said it kept the GIST from progressing for an average of 13 months. If you had that article you could show it to your oncologist and maybe he world contact the REACH program. Better yet download the form and take it with you to the doctor's office. I have found that sometimes it helps to have a plan when dealing with oncologists that are not familiar with GIST.
I've actually had them thank me.
Good Luck, Marilyn
4 Apr 2008
Subject: Re: Help - Getting into a New Trial
Since Sorafenib/Nexavar is available off-label ,you can just get it without being in a trial even if you do not qualify for the trial. My sister did not qualify for a trial,but is taking it off label. (It is not against the law to do this) Just get the form off the internet(Reach program+Nexavar). You will find it. Copy it and take it to your oncoloist. It takes a week to ten days for them to sort out the insurance. Then you get it in the mail and have to call 10 days before you need it again. The claims have been that it will keep GIST from progressing about 13 months. After that I hope Dr D'Amato has her Emory trials set up and my sister can get in a xl820 trial. Marilyn
4/18/2008
My sister,Elaine,has been doing well as far as contol of cancer on Nexavar, but
she seems to nap a lot,and move slowly. Also she is slurring her words. Her
hand coordination, is off,and she needs help feeding herself.
I took her to see Dr. D'Amato. She ordered blood work. Her liver enzymes are fine. All of her blood work looks good,but it was discovered that she had ammonia in the blood. This is unusual since everything is fine with the liver.
About six years ago she had a similar problem when it was discovered that she was allergic to Depakote which she had been taking for many years. The depakote caused ammonia in the blood,and when she switched to a different seizure med she was fine.
Dr D'Amato has prescribed lactolose which I hope will solve the problem. I am wondering what could have caused this? Could it be Nexavar or the combination of her epilepsy drugs (phenobarbitol and dilantin) with Nexavar? Could the cancerous tumors breaking down and dying cause this? Her original tumor was attached to the small intestine. She now has quite a few mets in the peritonum and pelvic area. She has no GIST in the liver.
Today I took her to an internist. She found that she had a UTI. I do not know if this is related,but could also be contributing to her lethargic condition.
Well,I do hope that I can solve the mystery. It is a shame,because her cancer and seizures seem to both be under control. I hate to change her meds,but I do not know what to do.
[edit] Kath
Kath was previously in the Perifosine and Gleevec trial - see Perifosine and Gleevec page
9 Feb 2008
Subject: Starting Serofenib (Nexavar)
I will be starting serofenib (off label) next week. The side-effects seem to be same as for sutent. A couple of differences are that it is taken on an empty stomach (2 200mg pills twice a day, one hour after food and two hours before food) and no alcohol (there goes my red wine which I swore was the reason I don't have liver mets). I will have my next CT scan in two months. If at that time it is determined that the drug is not working, I will be facing surgery no. 7. I feel lucky that surgery continues to be an option for me.
Kath
3 Mar 2008
Subject: Updates on Trial Drugs - My Update on Sorafenib
I'm sharing my latest on sorafenib (nexavar) though I am not in a trial but taking the drug off label. After 11 days I had to stop taking 800mg of sorafenib because I broke out in a very itchy rash. After discontinuing the drug for a week, I have resumed taking it yesterday at 400mg with the hope of increasing the dose back to 800mg. My blood pressure was elevated after about a week on sorafenib. My oncologist prescribed Micardis to resolve this problem. The Cardiology Department at M.D. Anderson recommended lisinopril. "These two medications are somewhat similar in the way they work. Lisinopril is an Angiotensin Converting Enzyme Inhibitor that lowers blood pressure. Micardis is an Angiotensin II Receptor Blocker that also lowers blood pressure in a slightly different way. Both medications are similar enough in the way they work that you should take one or the other" is what I was informed.
Otherwise, I have had no noticeable side-effects.
Kath
May 30, 2008
Hi Everyone,
I also have good news regarding my last scan on sorafenib.
After the perifosine/gleevec combo not working for me, I've had shrinkage on sorafenib.
I had to take a week's break because of an itchy rash, and then started up again at half the dose (400mg) for a week before returning to the full 800mg dose. The rash did not return.
My side-effects are minimal: dry facial skin and some hair loss, as well as elevated blood pressure for which I'm taking 3 different meds and being monitored by the Cardio dept at MDA. Even my blood work is coming back good. On sutent, I had to have a neulasta shot after every cycle.
I'm taking sorafenib off label.
Kath
[edit] JOHN
MAY 2008
Just had my scan after being on Sorafenib for 60 days and tumors are now stable. Yea!!!! Gleevec worked for a little over 4 years and then tried the Perifosine + Gleevec trial but did not get tumor control. I am "just somewhat excited". Really I was over the top excited. Just trying to be funny. I had not had tumor control for months and you know how that makes you feel. That roller coaster we ride before and after scans was really getting to be a scary ride. Couldn't be happier today!!
SIDE EFFECTS: Hand and foot syndrome seems to be the worst part. Both blistered up and the top layer of skin hardened and is falling off. Started at 800mg daily and now down to 400mg and hands and feet seem to be improving greatly.
John
[edit] DONNIE
MAY 2008
Hello Fellow Gisters It's been a while since I've posted anything, Was waiting to get results on first scan after starting Nexavar. Talked to local onc today and she said more progression and liver involvement. For those of you that don't know me, I am a 7 year + survivor and I have been on Gleevec, Sutent, AMN107, Biogen drug called B110021, and now Nexavar for 9 weeks.
I have struggled with side affects from Nexavar at 800mgs and 600mgs so I'm only able to take 400.
Donnie
[edit] Butch
1 Jun 2008
Subject: Re: Nexavar not helping Butch-Need advice
Hello everyone, I am sorry to again post frantically but I am at a loss. After almost 4 weeks on Nexavar Butch has massive ascites/leg edema and is exhausted most of the time. His feet became so swollen that he cannot walk and he had such bad sweats with a low (95.5 temp) that the local oncology office told me to take him to the ER. The ER found him to be very dehydrated, his liver function tests are also very elevated and his heart has sustained damage at some time don't know when ( this had never been checked and he had been on gleevec and sutent he has no pain in his heart), the doctor recommended admission but Butch asked what they would do for him and he did not have a good answer so he opted to go home. I am soo scared, I am heartbroken and wanting to do ANYTHING to ease his suffering. I have taken him to Dana Farber ( when he was well) and to Dr. Blanke ( when he was well) and more recently he has gotten his care at UCLA as we live in San Diego, but I really think that I need to try MD Anderson and see if there is anything that could help him at least be comfortable I know that they have an alternative medicine center there if nothing else. Anyway, the travel is scary and I don't even know who he should be seeing if we do go there? I will take any and all suggestions at this point, it is dire. Thank you, Sincerely, Kerry