GIST Support Wiki

Sorafenib (Nexavar)

This 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.


Basic Information

Manufacturer: Bayer and Onyx

For information from the manufacturer link here.

For financial assistance information see our page Nexavar.

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.

21 Jun 2010

Can anyone in the states give me any information regarding sorefenib

Sorafenib (Nexavar by Bayer) is a drug similar to Sutent, but with some additional actions by blocking B-Raf signaling. Sorafenib can block some exon 17 KIT mutations that are resistant to Gleevec and Sutent, btw. You can read more here:

In the USA, GIST patients can sometimes get their private health insurance companies to pay for Sorafenib by an off label prescription, even though it is not yet FDA approved for GIST (it is FDA approved for renal cell carcinoma). THe NCCN consensus guidelines for GIST have recommended sorafenib and nilotnib as effective therapies for GIST, which helps in getting insurance coverage.

Bayer also has an assistance program to help patients get access to the drug if their insurance won't do it. It is called the REACH program and you can find out more here (scroll down until you see REACH:

Comments from Trial Participants

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


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.


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.


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


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

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.


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


Try Konsyl natural fiber supplement. It worked for me. I have the same problem with Nexavar (diarrhea was so bad).


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


"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.


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

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.


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 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


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.


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


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.

9 Jul 2008

Subject: Elaine's passing

My sister Elaine Martin died very suddenly Tuesday. Monday afternoon she was hospitalized with a fever of 104. They did a scan in ER and saw a colon perforation. She had surgery,but died shortly there after.

She was never in pain and since her last two scans had been stable on Nexavar so it was a shock.

The tumor on her left side had a huge absess and the the colon was perforated by that I believe. We never saw it coming,but with the high ammonia levels both Dr Maki and Dr D'Amato felt that something was going on in her body. I believe they knew this was a possibility.

I think perhaps again the Nexavar was working too fast and the large tumor just broke apart in her and absessed.i wish she had started it when the tumors were smaller.

Anyway a very good surgeon tried valiently to save her but to no avail.It may have been a blessing because she would of had at least three more surgeries after that to put her back toghether. She never suffered with GIST,and I am glad that she did not have to. She would have been in Emory for a very long time.

She lived with GIST five years and I can honestly say they were five good years for her. I just thought we could beat this thing. Hopefully in the future there will be a cure.

Good luck to all!

Marilyn Kameron

1 Aug 2008

Subject: Re: nexavar costs

Hi Brad We went through the REACH program. Most ot the Nexavar cost was covered through Medicare. I feel that Nexavar would have been the drug that worked for Elaine,but her mets were so very large and numerous by the time she got on it. She was stable since January on Nexavar,but apparantly one of the tumors was bleeding which caused all of the other problems which lead to her death. Her GIST was in the small intestine and peritoneum. Her high blood ammonia level is what indicated that one of her tumors was bleeding.(this is what Dr Maki thought anyway). Maybe Nexavar was working too good and breaking the tumors down too fast. I don't know,but I wish she had started it earlier. She had exon 11 GIST and failed both gleevac and sutent. Marilyn


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.


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.


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.


29 Jul 2008

Hi Bonnie I started nexavar five months ago. It has caused high blood pressure which is being controlled by three different bp meds. I also have hair loss and sometimes I have cramps in my legs and hands. Otherwise I'm doing okay on it.

It's taken on an empty stomach (two 200mg tablets twice a day). At first I had a severe rash but after taking a week off and then a week at half dose the rash did not return.

My last scan showed shrinkage. I'll be having another scan this week and will report the results when I get back from M.D. Anderson.

If you have any other questions please feel free to email me.


6 Aug 2008

Subject: Scan Results on Nexavar

Hi Everyone Last week I had my second scan since starting nexavar in February. In April I had shrinkage -this time I have stability. My next scan will be in two months' time. BTW - I'm able to tolerate 800mg a day with only one serious side-effect (elevated blood pressure) that is controlled by meds. Kath

29 Sep 2008

Subject: My Latest on Nexavar

Hi All

I just had a ct scan at MDA last week. Once again I'm stable on 800mg nexavar. My bloodwork was good except that my magnesium levels were a little low so I'll be taking medicine to correct that problem. Dr Trent, however, suggests I now have surgery while I'm stable so I'm seeing my surgeon on 6 Oct. This will be my 7th GIST surgery. Dr Trent's reasoning for having surgery now is that the tumors should come out while stability is achieved. Kath

Primary removed from small intestine Nov. '02 (8.5cm=2C mitotic count 75/50 hpf Recurrence removed from small intestine Nov. '04 (Brisbane, Australia) Recurrence (5 tumors) removed from small intestine and bladder Apr. '05 (Canberra Australia) Recurrence removed from small intestine Apr. '05 (Canberra, Australia) Recurrence removed from small intestine Mar. '06 (San Antonio, TX) Recurrence removed from subcutaneous layer and lymph nodes (San Antonio, TX) Drugs: Gleevec, sutent, perifosine/gleevec, and now nexavar

25 Oct 2008

Subject: Surgery - John


I'm sorry to hear that nexavar has stopped working for you. I'm still well on it and the few side-effects I did have have disappeared. I'm still on the full dose of 800mg.

I'm probably having surgery at Brooke Army Medical Center in San Antonio. I recently had another CT scan done since my surgeon needed a current one before scheduling surgery. I'll see him again on Monday (the 27th).

I hope all goes well with your surgery. Do you have any idea what Dr Trent will recommend next? Take care Kath

12 Dec 2008

Subject: Home from Surgery and Path. Results

Hi All

I came home yesterday after having surgery last Thursday. I'm feeling pretty good and am happy to finally be home again.

My pathology report shows that both tumors that were removed were GIST. One of these tumors kept showing up on my CT scans as looking like it was a uterine fibroid tumor - it was not even attached to the uterus but was instead attached to the small bowel. The other tumor was attached to an ovary and the bladder.

I will resume taking 800mg nexavar on Christmas Day.

Thanks to all for wished me well. Kath

22 Dec 2008

Subject: Problems with Healing after Treatment with Nexavar

There were some concerns expressed by my surgeon as to how long to be off the nexavar before my 4 Dec. surgery. It was finally decided that I should be off it at least 3 weeks before and 3 weeks after surgery. My surgeon told me that healing might be a problem and that there was not much information available regarding the effects of taking nexavar before surgery.

When I left hospital a week after my surgery, my incision seemed to healing well however within a day the lower part started oozing. A little less than an inch has opened up and continues to ooze. I have also started having pain in that area. I will see one of my surgeons again tomorrow.

I'm passing this information on so that others will know what can happen if they are contemplating surgery after being on nexavar. BTW, I understand that John is not having the same difficulties as I am after his surgery. However, he was taking 400mg while I have been taking 800mg.

Take care, Kath

28 Mar 2009

Subject: Starting Tasigna

Hi All

I have had to stop taking nexavar because after almost 4 months since surgery I am still not healed. Two months after surgery=2C 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.


28 Mar 2009

Lee Ann asked:

Is this lack of healing a known side effect of Nexavar?

Yes it is however there was no data available. The way it was explained to me was that Nexavar stops blood vessels from forming and to heal your body has to produce capillaries.

BTW the maker of Nexavar sent me a form to fill out as they have to report this side-effect to the FDA.



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.


28 Jun 2008

Subject: Re: ASCO presentation - Nexavar dosage and response

I am currently doing 400mg daily as any higher than that and hand and foot syndrome is un bearable. Let me know if you found anything that effectively relieved hand and foot if that was a problem for you. John

28 Jul 2008

I am taking Nexavar also. Started at normal dose of 800 mg daily but after week and a half hands and feet were all blistered. I dropped back to 600 then 400mg before it improved. So now at 400 daily hands and feet still not perfect but good enough and first scan at 60 days showed stability of all my mets and 60 days later, last Wed I had PET and had low metabolic activity so I am a happy camper. I like Kath am losing hair but oh well it's just hair. Have good amount of energy though and BP higher but still ok.


25 Oct 2008

Kath where do you stand as far as surgery to remove your turmors? Sorafenib is not keeping mine in check any longer. Dr Trent wants to have them removed so I met with Dr. Curley at MDA this past Wed. I have 3 liver mets and 1 implant on rt side of peritoneal cavity. He wanted me to use Dr. Pollock but I had bad experience with him once and besides I believe Dr. Curley is the finest on livers anyway. Besides it will be my third with Curley so I know what to expect. Nov 10th is the big day. I will email Trent to get him working on a plan after surgery.


25 Oct 2008

Subject: Re: Surgery - John

I haven't talked to Trent about a plan yet. Will let you know when I know. Sure wish I could have tolerated the full dose as you have. I have been able to move to 600 mg without much change but now Curley wants me off before the surgery. That really makes me nervous but it's only a couple of weeks off. Good luck to you. Have you heard anything from Betty?


20 Nov 2008

Subject: Back from liver surgery

Just got back home from liver surgery at MDA yesterday. This was my third and it has been about 8 years in the mean time. Went even smoother than previous 2 and I am 8 years older at 59 now. Currently it looks like I may be going back on Nexavar in a couple of weeks unless molecular testing leads us elsewhere. Just had to get my good news out and Betty A and her husband came by to visit while in hospital and it was great to see her.

John B

23 Sep 2009

Subject: Re: Sprycel and GIST

I just started trial on Dasatinib about 2 weeks ago so I don't know about response yet. Side effects have been flu like symptoms but that seems to have been diminished now. Had weight gain also but I think that is just because I am no longer on Nexavar. John B


Donnie Ray had been on Nilotinib prior - see Nilotinib (Tasigna) page

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.


8 Dec 2008

Subject: Passing of Donnie Ray Chadrick Jr.

We received word that Donnie Ray Chadrick Jr. passed away this past Friday. He is survived by his wife Chantelle, his parents Glinna and Don, his siblings Debi, Ramie, and Jason, and his daughter Meghan. He was a trucker, loved motorcycles and fixing up an old truck.

As some of you may know, he was a fighter and did his best to find a treatment for his GIST after failing Gleevec ( 3 years) and Sutent, by trying different trial drugs.

Brad says " He was a warrior with spirit."


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

30 Jun 2008

Dear friends,

Butch has sadly lost his battle against GIST, he passed peacefully at home surrounded by friends and family in San Diego on Sunday 6/29/08 11:20am, this loss is devastating. I hope that all of you continue to battle on in his memory.

Thank you for all your support over the last 8 years.

Kerry, wife of Butch


Minnie was on Nilotinib (Tasigna) prior - see corresponding page

June 27, 2008

Dear family & friends,

Daniel & I went to see my onc today to talk about the result of my last scan. There is a mixed interval response – good news & bad news. First the good news - the tumors in the liver are staying stable - the size of the tumors in the liver stayed the same & there are two tumors with decreased metabolic activity meaning they are less active. However, there is a new focus of metabolic activity with an 8.8 SUV within a small bowel loop anterior to the midpole of the left kidney which is suspicious for new metastatic disease. Evaluation is limited due to lack of opacification. All we can do for now is to watch this new activity. The plan is to continue taking Sorafenib/Nexavar until my next scan unless something comes up that I will need one sooner. As always we are going to trust in God’s goodness, faithfulness and sovereignty. His plans are perfect.

The side effects continue to be a problem so I ask for your prayers for God to give me the grace and strength to persevere. My onc hopes I can tolerate more medicine and not take as many breaks as possible but I had to take one the past week. I didn’t take a long one because the tumor fevers and pain around the area seem to get worse when I’m off treatment which might mean the tumors are getting more active every time I stop so I’m trying to push this medication as far as I can. It’s not easy but God is always good.

Till the next update…

In His grip,


Psalm 112:7 He will not be afraid of evil tidings; His heart is steadfast, trusting in the LORD.

30 Oct 2008

Subject: Minnie update

Hi all - This is Margie, Minnie's sister. I used to more actively post when Minnie was d/x in 2004 but now have been an active silent reader.

In any case, I know many of you are wondering what has been going on with Minnie so I thought I'd update you on Minnie's condition. Minnie has deteriorated significantly. She is now confined to her bed 24/7 except for very few trips to the bathroom. Even her bathroom trips require assistance. As you can probably surmise, she can no longer do a lot of things on her own. The good news is she's still alert and is still eating. The latter is attributable to steroids she's taking to reduce inflammation of tumors that are now rapidly spreading throughout her body. In fact, only her left lung is now functioning because her right lung is surrounded by tumors which prevent it from working at all. Her nurse practitioner who came out to see her yesterday indicated that she heard no sound when she placed her stethoscope on the upper right side of her body.

I now sleep with Minnie and her husband Danny since I got here Tuesday night. Minnie has had two frightening fainting episodes. The first one occurred last Monday evening when she was in the middle of discussing her son Daniel's day with her husband Dan. She passed out mid sentence and was completely unresponsive. Additionally, she showed no signs of breathing. Despite Minnie's DNR (do not resuscitate) instruction, Dan revoked it because he believed that what happened did not have anything to do with her cancer. (He would later find out that he had no authority to revoke it - only Minnie and/or her physician could do it.) In any case, Dan performed CPR and was able to revive her. The paramedics were called and Minnie was taken to the hospital. I will not bore you with details of confusion that happened later due to DNR instructions, hospice care, etc. Anyway, the following day, while at the hospital waiting for the ambulance to take Minnie back home, Minnie had another episode. It was apparently more frightening than the first one and no one in the hospital made a move to help because of DNR. The hospital personnel left the room while Minnie was in the middle of it (can you believe it?!). All Dan could do was keep her in his embrace until she came to.

The hospice provided us a to-do list in the event this happens again. We've all agreed that at least two people should be on Minnie watch at all times. Hence, the nightly slumber party with me.

We're taking it one day at a time. We're grateful for each day we wake up and find Minnie loving each one of us like only she can.

Your warm thoughts and well wishes have reached Minnie and she's very grateful.

I will keep you posted if something else arises.

Best, Margie

19, November 2008

Hello everyone! I’m Margie, Minnie’s sister. Minnie asked me to provide an update on her behalf and I know many of you are interested in finding out how she’s doing so here it is.

As most of you know, she was taking steroids to reduce the inflammation of her rapidly growing and increasing tumors (yes, the tumors are widespread). Then, approximately two weeks ago, one of Minnie’s hospice nurses suggested a 24/7 saline drip to provide her much-needed hydration because there was evidence indicating that her kidneys were starting to fail. Moreover, the saline drip helped reduce the cramps in her shoulders, arms and legs. However, in reality, the saline drip was prolonging her life and the steroids were doing nothing but to keep the swelling of the tumors in check. Minnie decided to cease both except for a few “comfort meds.”

Minnie is tired but she’s in a joyous place. She is now, more than ever, ready to be with God. She has fought long and hard but her little body can only take so much. It is reassuring to know that Linda, Minnie’s hospice nurse, will make her as comfortable and as pain-free as possible. Linda has made herself available to Minnie at all hours.

Thank you very much for your e-mails, compassion, friendship and love. Your thoughts have reached Minnie and she embraces them all warmly.

One of us will keep you posted as anything noteworthy arises.

Best, Margie

28 Nov 2008

The angels came and took her away this evening.

Our hearts are heavy but at last, she can now truly rest in peace.

- Margie, sister of Minnie, d/x 5/2004, safely in the Lord's arms, 11/28/2008

NOVEMBER 29, 2008

Dear Family and Friends, who have trekked along with us in this amazing journey,

Today my mom is in her true home. Last night around 8 pm she went to her heavenly father, away from the pain and suffering that she’s been battling for so long. My dad and I would like to thank you all for your prayers, for your service, and for the comfort you brought. My mom loved you very much.

Until the end, she fought hard and finished strong. About an hour before she left, my dad, aunt, and I were called up to pray for her because she was battling something inside of her. Evil was trying to make one last-ditch effort. There, in the midst of her pain and suffering, she called on the name of Jesus to come save her, and he did. By her bedside we prayed, fervently and wholeheartedly, and bathed her with the scriptures, which fueled her to keep fighting. At the end, we saw her in peace. I can only imagine the joy her soul had as she ran, with all her heart and with a new body as she would’ve wanted, into the arms of our heavenly father. Paul describes his journey much like hers in 2 Timothy “I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.” I know she is up there enjoying that reward right now.

So I encourage you all to keep fighting the good fight and finish your race just as my mom did. For we all know that’s what she would’ve wanted you to do. Never forget her, for many of us we can’t, and the impact she has made, and most of all, for how she allowed herself to be used by God. We will miss her very much, but for those of us who share the gift of salvation with her, we will see her again, and what a joyous meeting that will be. So for this last update I will finish it as she always did, and now it is so true that she is in the amazing grip of God’s grace.

In his grip,

Daniel Broas

Bonnie G

15 Aug 2008

Subject: starting nexavar

Hi, Today begins my next step in my GIST fight. I will be starting 400mg of nexavar. Been reading post from those on it already and it sounds promising.

A little history, was on gleevec for 2 1/2 years, on sutent 2 years, had two operations, the last on was August 2007. Will keep you up to date on how things go.

Bonnie..from the rain soaked Adirondacks

27 Aug 2008

Thought you would like to know that my mom Bonnie is in the hospital. She went in last Thursday extremely tired - could not seem to stay awake - we all thought it was the new drug Nexvar (not sure how you spell it). They found that her thyroid was completely out of whack and that she had gallstones. They started treatment for it but after a couple days nothing improved.

Over the weekend she would respond to my dad and brother but on Monday they could not get any response from her. They thought at first she may have had a mini stroke but all of that came back negative. After more tests they have found out her ammonia levels were really high. Basically they think the cancer has taken its toll on her and that her organs have damage. She has been opening her eyes but unable to speak and I flew out from Washington yesterday. The doc says we are not on a death watch right now but they have said she probably will not be able to be put on any more cancer drugs. We are hoping she will pull through this challenge.

I hope this finds you doing ok - I know you had a scan coming up.

Valerie (Daughter of Bonnie from the Adirondacks)

27 Aug 2008

Valerie, Elaine the sister of Marilyn developed ammonia in her blood on Nexavar. Dr. Maki at MSKCC treated her. I do not understand this, but I strongly urge you to have Bonnie's doctors contact Dr. Maki at MSKCC, and probably to take her off Nexavar immediately if she is still on it. My wishes go to Bonnie. Julie

27 Aug 2008

Someone else had ammonia problems on Nexavar, which seemed to be related to the GIST tumors turning necrotic from the drug. Would surgery to remove bulky dead tumors be an option?

A syrup called Lactulose can help to extract ammonia out of the blood into the bowels of the GI tract for elimination...

I found a similar patient story on a message board by searching Google:

""my dad is treating his liver cancer with Sorafenib but is now interrupting the cure for the second time because of accumulation of ammonia on his blood" Marina

2 Sep 2008

Dear Valerie,

I am so very sorry for the loss of your mother and thank you so much for your very thoughtful, heartfelt letter. I'm sure that your warning about ammonia levels will help others to be alert to this potential problem. It seems that Bonnie is the second or third person who has developed ammonia with Nexavar that we have heard about. We need to pay attention to this and hopefully someone will benefit from this knowledge in the future.

Bonnie was always up beat in her posts and we also will miss her.

My thoughts and prayers are with you and your family. Lee Ann

2 Sep 2008

Dear Valerie, Thank you for writing us about your mother, Bonnie, our listmate. We are so sorry for your loss. I am glad we have Bonnie's words forever in the story she wrote for our Stories of Strength page at If you should ever want to add to her story I can do that for you. May all your family find peace and strength. Julie


Charlie was on Nilotinib (Tasigna) prior -see corresponding page

24 Sep 2008

Subject: leaving Sutent

After a year and a half Sutent has failed Charlie. The latest scan today showed increasing size of the existing tumors and several small newer ones. Was disappointing as two months ago everything was stable. He will start Nexavar now at 400mg and work up in a couple of weeks to 800 mg if possible. Because of the open wounds he does not qualify for most trials that are out there so we will try this and add Rappamune later if need be. I brought all the information about GIST patients and ammonia accumulating in the blood so he will test for that as part of the blood work. I am concerned as the scan showed 3 very tiny spots in the lungs for the first time also. Can Gist spread to the lungs? Thanks and wish us luck.

October 23, 2008

As of tomorrow Charlie will be entering hospice care. Gleevec, Sutent, Tasigina, and Nexavar have all failed him. He is in a lot of pain so this is probably the best for him. We sure have tried everything but his liver just would not cooperate with the drugs. At least his foot is healing now that he is no longer on Sutent. A lot of good that does now! It has been a bumpy 5 years and two months ride with Gist. Guess I do wonder if he not received the placebo on the Gleevec trial if things would have ended up this way. Anyway we are both scared to death not knowing what to expect.

23 Oct 2008

Subject: Re: Charlie-To Marina

Thanks- But Charlie has gotten really bad since he tried the Nexavar and is in no condition to travel now. Also the trials I checked into want you to have at least a 3 month life expectancy and no open wounds and that is no longer the case for Charlie. His liver is just full of tumors and now Drs have found one on his kidneys and one on his pancreas. He wants to give up and says he has had enough so I feel the need to honor his wishes. He is so weak and has lost 60 lbs since June.Thanks for all your help in the past. Hope you continue to do well.

23 Oct 2008

Okay. Sometimes yet another clinical trial is not the answer. Instead, living for the moment is the answer, enjoying a good movie, the birds outside the window, and celebrating the breath in your lungs, and feeling that your body and spirit are integrated into the greater fabric of time, space, matter and the universe...


28 Oct 2008

Subject: Charlie's passing

After only four days in Hospice care Charlie has passed away. The Gist tumors had just completely taken over his body. He died peacefully surrounded by his children and grandchildren. Thank you for all your help in the past 5 years that he has been fighting gist.


Ron S

5 Dec 2008

Subject: Re: Sorafenib...Nexavar

Hey Fellow Travelers...

It looks like I'm moving on to Sorafenib (Nexavar). I know others are trying this as well...anyone having success with it? Any details to share? Side-effects sound pretty similar to Sutent, which I've tolerated just didn't serve very well. What are your experiences with this drug?

I guess what I'm most looking for is some reason to be optimistic about taking Sorafenib!!!

Ron in PDX

31 Jan 2009

Hi MaryLou and friends...

So sorry to hear that Nexavar was not helpful for you. If you have the energy and means there are still other trial drugs out there. I have appreciated your positive and always encouraging posts. You definitely are in my prayers as you figure out the next steps. I hope these days will be pain free and filled with love ones and good thoughts.

It doesn't look like Nexavar is going to work for me either. I may try the IPI504 trial here at OHSU...or it may simply be hospice time for me as well.

All the best to you...

Ron in PDX

3 Mar 2009

Dear All,

I have been in touch with Ron Stump's wife, Kay, and she wanted me to pass along an update on Ron.

He has entered hospice this week. Kay asked me to "let everyone know that the GSI list serve has been helpful to guide us through this journey of GIST and it has been less frightening and more manageable because of those who have been willing to share their experiences. Our journey is not over but we are seeing the end".

I know that we all send our thoughts and prayers to Ron, Kay and their family.

Lee Ann

Mary Lou

12 Dec 2008

Subject: Re: Sorafenib...Nexavar

Ron, I am on Nexavar and have been for about 1 1/2 months now. I've had the symptoms they mention...similar to Sutent except for the mouth sores which were terrible for me.

I go mid Jan (which will be 2 months on Nexavar) for my ct scan. don't know what to expect but am hoping for the best. My biggest problem that I have no control over is gagging and vomiting. It has kept me in the house even with anti-nausea meds like compazine and zofran. I have diarhea or loose bowels but I can control that by wearing a sanitary napkin and yes, you men can wear them as well.

Let me know when you start Nexavar and how it goes. We are all in this together. I wish I had more news for you but as of right now, that's it. I am not eligible for any trials my doc has recommended as I have a clot in my lung and a left bundle branch block in my heart. I was all set to go to Boston for a free trial but that fell through due to the above.

I know there will be something else if this fails me so I'm going to keep my hopes up.

Hang in there. Mary Lou

12 Dec 2008

As a PS to my prev message, I've lost over 20 pounds between Sutent and Nexavar and the loss of appetite they cause. If you have extra weight on you, good. If not, eat a lot before you go on the med and bulk up in case you lose your appetite and the wt I have.........

Mary Lou

1 Feb 2009

Hi All I just spoke to Mary Lou. She is not doing well and can use some prayers. Nexavar did not work and at present she is not taking anything. She says that just getting dressed in the morning wears her out. The family is checking into hospice care.

I'm very sad to hear this news.


15 Feb 2009

Hi All

I spoke with Mary Lou's husband. Mary Lou's condition has deteriorated a lot since last Saturday. She sleeps most of the time. Her husband says that this is what her doctor said would happen, however, he said he wasn't told how long she had left. I imagine not long. This makes me very sad.



6 Feb 2009

Subject: Nexavar results and side effects

I would like to hear from anyone who has been on Nexavar for at least a few months and know what results you have experienced and side effects you have developed. I am coming up on my first full month and won't have a scan for about a month. Side effects have been few other than severe fatigue and some strange sensory malfunctions which no one seems to know anything about. Hope you are all doing well on whatever you are using.

Thanks in advance for your help!



29 Mar 2009

What is Tasigna? I have not heard of this one. I myself am taking Nexavar about 10 days now. So we still don't know if it is working. Just curious as to if Nexavar does not work as Sutent did not then, Tasigna could me of some interest to me???

Marie H

30 Nov 2009

Subject: New growth and Tasigna

I went for another scan on Nov. 16th. There was slight growth of my tumors. A couple of spots that were barely noticeable on previous scan were more visible on this scan. As well one mass grew 1cm X 1cm. My insides are so full of tumors that there is literally no space left in my abdomen. Any slight growth causes more discomfort. The mass that has grown is right under my diaphragm and is pressing on my sternum. Even my veins in the general area are sensitive to touch. I've been dealing with this disease for nearly 5 years now. Did well with Gleevec until just a year ago this Dec. when we discovered much growth. Sutent failed and I have been on Nexavar for 8 mths. and tumors were stable til now. I have been carrying around the tummy of a 7-8 month pregnant woman for the last year. I've handled all of this quite well and have remained positive. But I'm now getting very tired and frustrated with the whole ordeal. My positiveness is fading and fast. I'm angry and scared and weak. This is not me. I am actually quite strong. But I just don't know how much more I can take. I am now going to be starting Tasigna. This is the last of the meds available to me other than clinical trials. I am beginning to look at my time left as quite limited. Going through this holiday season thinking this will be my last. I am also very nervous of what lies ahead with Tasigna. I have been very lucky to have no side effects with any of the others, except for Sutent which did nothing for me. Anyone with any information on Tasigna please respond.

Thank you and god bless, Marie

Tony P

16 Jun 2009

Subject: From Bad to Worse


Tony's symptoms and side effects have gone from bad to worse so much so that he said he cannot live this way.

For the last two weeks he has been off Sutent because of the side effects and was to start Nexavar today.

Since he stopped taking Sutent his side effects have become much worse, we thought the side effects would subside. Is this due to disease progresssion?

I've read that many of you take medication for pain, for what type of pain? Tony has such severe bloating that he can't stand up without doubling up. He has taken gas X and other such medications but no relief. This is only one of the things he is dealing with.

Anyone out there that can help???

Love and Peace,

Kay, wife of Tony P

20 Sep 2009

Subject: Down to the Wire

Hi All,

Have not been on the site since the end of August. My Husband Tony is having a real bad time and I don’t know whether or not he’s going to make it.

He has been on 800 mg. Nexavar since the middle of June 2009 and I would say he has lost about 30 -35 lbs. Last weight was 128 lbs and I know he has lost more.

Cannot eat due to the bad dry taste. Everything tastes like cardboard. He has been given an appetite stimulant along with a steroid and its just not working. He cannot tolerate anything salty, spicy yet he states his food has no taste. He had 2 pints of blood in June and then was in the hospital about 3 weeks ago and had a 2nd upper endoscopy and both showed nothing.

CT in July showed that the lesions in his liver were melding together and he must have about 20% liver function. CT last week showed the same. Was told that blood work was OK but I have not seen the report yet.

Stopped going to Moffitt in Tampa and are now going to MD Anderson in Orlando. He is so weak that it’s hard for him to travel any distance.

At this point I will be speaking with the doctor to have him admitted to the hospital for further evaluation.

Does anyone have any suggestions besides traveling out-of-state??

Love and Peace, Kay – Wife of Tony P

14 Oct 2009

Subject: Nearing Journey's End

Hi All,

I have been totally out of it and don't know what has been going on at the site since I have not read any mail in almost three weeks. Tony was hospitalized again for several days and seemed to pick-up a little. But after a few days at home he was reverting back with all the symptoms and side effects of this disease. A week later we were back for more labs and saw the oncologist. More weight loss and depression and now we have called in Hospice per the doctors recommendations. Each day gets worse than the one before. It's only a matter of time and the waiting and seeing someone you love fade into the distance is very hard to watch.

I have always felt the comfort of this list over the past 6 years and have also shared the pain of missing those who have passed on to a greater life.

Please keep us in your prayers for a peaceful journey home for Tony.

Love and Peace, Kay, Wife of Tony P

22 Oct 2009

Subject: The Journey Home

I am sorry for being late in thanking everyone who have sent their thoughts and prayers to Tony during his last days. Even though I knew that GIST would win out in the end I could not bring myself to accept that Tony's Journey on earth would end.

But it did. On Saturday, October 17th at 6:10 PM he left to return home to GOD. Tony wanted to go home and I had to say it was OK because his suffering during the past three weeks would come to an end and he would be at peace. He has joined all the GIST Soldiers who have gone before him. But now I am left with a hole in my heart and pray that the monster GIST be killed off so that others do not have to endure it.

My thoughts and prayers to all that we find an end to this disease.

Love and Peace, Kay - Wife of Tony P


26 Sep 2009

Subject: Update on Steven

Today was Steven's consultation with Dr. D'Adamo at MSKCC.

After a brief registration (most info was done over the phone yesterday) we went up to Dr. D'Adamo's floor, filled out a few forms, Steven's vitals were taken and we were in the Dr.'s office in a matter of minutes. Steven was first seen by the Dr.'s assistant Dr. Murphy. He was a very patient Dr. with a great bedside manner. He went over Steven's history from day one of his GIST journey then went to get Dr. D'Adamo.

Dr. D'Adamo was also very nice and with wonderful bedside manner. After briefly going over Steven's treatment history he gave us some options for Steven. These options were given not knowing Stevens exon mutation since it still has not come back from Dr. Corless however, Dr. D'Adamo is assuming Steven is exon 11 since Gleevec worked well for him for almost 6 years. MSKCC is also doing a mutational test on Steven's tissue from his last surgery in December but that too will not be available for a few weeks. The first treatment offered was a clinical trial called BIIB021. It blocks Hsp90 protiens. He gave us all the written info on it and asked us to look it over. This trial would be 3 pills a week taken M/W/F or T/TH/S first thing in the am. The first cycle there would be lots of tests and being at MSKCC day 1, 2, 6 and 8 of the cycle. Each cycle after you would see the Dr. day 1 of the cycle only. The side effects are basically similar to Gleevec or Sutent although there is no mention of hand foot syndrome.

The other treatment option is Nexavar. I think everyone here knows about this drug and from what I can tell is the most popular drug as a third line of defense after Gleevec and Sutent fail. The side effects are very similar to Sutent which isn't making Steven too thrilled to say the least.

The Dr. seems to think that the chances of success for either of these drugs are similar so Steven has decided to try Nexavar first. If this fails then he will still be eligible for the trial. The assistants at MSKCC have started the paper work for RX assistance since Steven only has Medicare Part D and the copays will be pretty high and he will reach catostrophic coverage immediately. We will know within 2 weeks if he is eligible. 8 weeks after he starts the drug Steven will have a PET scan to see if the drug is working.

We discussed surgery but Dr. D'Adamo does not feel it is an option because the surgery could cause more harm than good and if the surgeon were able to remove all tumors they would just grow back. The Dr. feels that Stevens quality of life would be compromised and not improve his overall survival rate.

All in all we were glad to have gone there and finally established care with a GIST specialist. Steven did state his regret for not having gone to a specialist to begin with and Dr. D'Adamo said that he probably would not have treated Steven any differently than how he was treated because Gleevec worked for so long.

Anyway, Steven is feeling very good right now and a lot stronger since being off Sutent. He was back on 800 mg of Gleevec for about a week and his night sweats were gone. He went off it a few days ago and within 24 hours the sweats started again. He will be off any treatment until he can get Nexavar so I asked him if he would resume Gleevec for a while and he said he'd rather not. I'm not sure if this is a wise decision but I hope I can convince him otherwise.

I will update again when he receives and starts Nexavar.

Regards to all,


22 Oct 2009

Hello everyone,

I just wanted to update Steven's status. As some of you may recall, after 5 1/2 years of being NED on Gleevec 400 mg, Steven had recurrence. He had surgery last December but the surgeon could not remove the biggest tumor. Steven went on 800 mg and had very little growth in 3 months so continued with it but in July of this year there was further growth. He then went on Sutent 37.5 mg daily dosage for two months but it did nothing except allow his tumors to grow at a faster pace than 800 mg of Gleevec and made him severely fatigued and we believe was the cause of his hypercalcemia which landed him in the hospital for 7 days. After this he decided to go to Dr. D'Adamo at MSKCC and he gave Steven the option of Nexavar or the BIIB021 trial, an HSP90 inhibitor. Steven opted for the Nexavar for now knowing that if it fails he can still enter the trial.

Well, after 3 and one half weeks since applying for the Reach Program (we no longer have private insurance as the company I work for went out of business and Steven's retiree union coverage does not cover Nexavar), and a few problems with the prescription not being legible and the instructions incorrect, Steven finally received his Nexavar today! He was instructed to start at 400 mg a day (1 tab twice a day) for the first two weeks then go to the maximum dose of 800 mg. You need to take Nexavar either one hour before or two hours after a meal. Steven opted to take them 2 hours after a meal. He took his first dose at 2 pm and will take his next at about 9:30. So, now we hope and pray for Nexavar to do its job and not cause Steven too many side effects. Like Sutent, Nexavar can cause hand/foot syndrome so I started using a heavy moisturizer on his hands and feet and using a Ped Egg where needed just as I did before he started using Sutent. He never had hand/foot syndrome with Sutent so we're hoping the same will be with Nexavar.

Anyway, Stevens next appointment with Dr. D'Adamo is next Friday. I don't expect much from that appointment since Steven will only have been on Nexavar 8 days, but I may request a PET/CT since it's now been two months since his last PET. The doctor felt it was a good enough base form Sutent to Nexavar at the time of appointment but we also didn't expect it to take almost 4 weeks to get the medication. Steven did take 800 mg of Gleevec while he was waiting because we felt something was better than nothing.

I will update Stevens progress as time passes and hopefully it will be good news.

Best wishes and prayers to everyone out there.



17 Dec 2009

Hi all. I am happy to report that after 7 weeks on 800 mg of Nexavar all of Steven's tumors have shrunk. Some in half. Most just a small amount but we as well as Dr. D'Adamo are very happy.

It was a rough summer for Steven after he failed 800 mg Gleevec and Sutent never worked at all. He was pretty sick with tumor fevers and night sweats as well as hypercalcemia which had in the hispital for 8 days.

Steven has experienced no side effects on Nexavar except for hair thinning, which he's none too happy about, but so be it!

I hope that everyone has good news and I pray for you all every night. I hope everyone has a Happy Holiday Season and a Healthy New Year!

Best regards, Annette

3 Mar 2010

Hi everyone,

I thought I'd put something out here for two reasons. One, advice and two, if others are experiencing weight loss from Nexavar it might not just be from chronic diarrhea.

Steven has been on Nexavar a little over 4 months. He is taking 800 mg daily and tolerating it quite well and his last scan showed shrinkage. Side effects are minimal which is great, however, he has lost about 23 lbs since coming off Gleevec in July. He did lose some water weight from the 800 mg of Gleevec and the 2 months on Sutent made him lose his appetite so his weight loss definitely came from lack of calories. His weight loss now is more rapid.

Steven does not have chronic diarrhea and eats pretty normal. I noticed his weight loss in early January and we decided he needed to start lifting some weights since his arms, chest and back were looking a little weak or skelatal, for lack of a better word. He always had skinny legs so I didn't notice much loss there. In the 4 weeks that he worked out, averging 6 days a week, I noticed improvement in his arms, chest and back and he maintained his weight give or take a lb or two at 169 lbs. He stopped working out about 3 weeks ago because we had visitors then we both got sick (I still am, he's fine thank goodness) and now we are having visitors again so he won't be going for a while more. In that time he lost 9lbs and it shows again in his arms, chest and back.

Anyway, I did some googling on Nexavar and weight loss and came up with a few web sites mentioning muscle waste and one web site mentioned a clinical trial in Canada and France for muscle wasting while on Nexavar. Half the patients received a placebo the other half Nexavar. They all had Renal Carcinoma. The placebo patients did not experience muscle waste while the Nexavar users did. So, I am assuming this is happening to Steven. I do believe muscle waste is common with patients receiving traditional IV chemotherapy.

I also googled for treatment for muscle wasting and came up with a drug called Megace. I was wondering if anyone has used it or knows anything about it? Steven's local onc here in Florida didn't think he was in much danger, yet, and told him he would discuss some treatments when he returns for his appointment the end of this month to review his scan, which is March 25.

I will make sure he also speaks with Stevens GIST specialist, Dr. D'Adamo before prescribing anything.

So, any thoughts, same experiences?

Thanks a bunch for "listening".

Regards, Annette

3 Mar 2010

Subject: Re: Nexavar and muscle wasting


My GISTer husband, Ben, took Megace when he first started Nexavar. He, too, has lost a lot of weight and muscle. When we started this journey of GIST five years ago he weighed 210 lbs and was overweight at 5'8" in height. He now weighs 129 lbs., having lost 10 since early January. Megace was prescribed for Ben late last year in order to increase his appetite. Sutent particularly seemed to affect his taste buds and killed his appetite. When he started Nexavar, the weight loss begin again. Megace comes in liquid form and seems to work quite well if you are not interested in eating anything. Ben has since quit taking it because his appetite is greatly improved and he eats several small meals per day. I don't think Megace will help with anything other than increasing the appetite, I guess the theory being eat more and gain weight. Maybe others have a different perspective.

Molly in NC

11 Mar 2010

Sorry that the surgeons couldn't get all your tumors. They couldn't get all of my husband Stevens tumors either. He too failed Sutent and is now on 800 mg of Nexavar. He started 400 mg for the first 10 days and since he was able to tolerate it well the doctors told him to start 800 mg. He had a CT scan in December it showed smalk shrinkage of some tumors and stability in the rest. He has a CT scheduled for March 25th. His side effects include loss of hair, graying hair and weight loss. He eats fine but he has lost a lot of muscle. He must weight train to try and keep up. He is lucky enough to not have hand/foot syndrome but he does use Eucerine cream everyday, twice a day.

Best wishes to you!


28 Mar 2010

Sorry for the side effects Pam. My husband Steven is also taking 800 mg of Nexavar but has never experienced nausea. Are you splitting your dose and taking it 2 hours before eating or 1 hour after eating? Steven takes 400 mg in the morning, 2 hours before his breakfast (between 7 and 8am) and 1 hour after dinner (8 and 9 pm). He too has short term memory loss. It can be frustrating at times but I don't know of any medicine that helps and before I recommend any herbal supplement I would speak with my doctor. Some supplement drugs are contraindicated with oral chemotherapies.

As far as the pain goes, I hope the 800 mg of Nexavar kicks in and starts shrinking those tumors so you may get some relief. After 8 weeks (less than 2 on 400 then 800 mg) on Nexavar Stevens tumors shrunk.

Best regards,


28 Mar 2010

I believe you take Nexavar 1 hour before and 2 hours after eating. I am splitting the dose. Thank you for your response!


28 Mar 2010

I could have it backwards! I question Steven almost everyday then I have to reach for the paper with the instructions to be sure! You'd think I was the one with the short term memory loss! Sympathy side effects I guess!

All the best to you Pam!

6 Apr 2010

Steven had his second scan since starting Nexavar in October. While Steven normally sees a specialist, Dr. D'Adamo, at MSKCC, we are in Naples, Fl until May so he had to be scanned here. According to the results, most tumors were stable, one tumor shrunk, a smaller one from his last scan cannot be seen anymore BUT the largest tumor grew a little more than a centimeter. The onc here feels that since the last scan was done on a different machine it could be nothing but slicing issues. We forwarded the results to Dr. D'Adamo and await his opinion but I would imagine he won't want to change things just yet. Steven is scheduled to scan again at MSKCC June 8.

Steven has no pain, eats well, is very active and feels really good. He has started working out again and drinking Isopure Protein shakes to hopefully regain some muscle.

So it seems that Nexavar is doing its thing and we are happy with results.

Best wishes to everyone!


28 May 2010

Steven had a CT scan Wednesday, earlier than scheduled because once again his calcium levels were much to high (12.8) and the doctor was afraid his tumors may causing this. We received the results today. Unfortunately, his tumors are growing, albiet slowly, on Nexavar 800 mg. His pelvic tumor has grown 2 cm since December (about 1.5 from Dec-Mar and .5 from March till now). Other various tumors have grown approximately .5-1 cm.

Doctor D'Adamo feels that since the growth is slow Steven should continue on the Nexavar but is adding Valproic to it. Originally he mentioned Rapamycin but because it is not covered and expensive he said Valproic would do the same thing, if it works. We asked about Tasigna when we were discussing future treatments and he doesn't think much of it. We put it on the back burner for now. He brought up the HSP-90 trials at DF for future options as well. In the meantime, Steven has an appointment with Dr. Singer on Thursday to see if surgery is definitely ruled out. Dr. D'Adamo does say there is a risk of not only a colostomy but a cystotomy as well since Stevens bladder is also affected.

As for the calcium problem, it probably is from something the tumors are secreting so Steven had a Zometa infusion for that.

Another issue was found during the scan. Steven has 2 pulmonary embolisms on his right lung. He has to start injections of Fragmin but we await an answer from Patient Assistance because his insurance does not cover it and it's 135.00 per day!

So, the news isn't great by any means but we have an appointment with the doctor in three weeks to check his calcium levels and discuss the consult with the surgeon.

Steven is feeling really good and seems to be in very good physical health aside from having GIST. The embolisms seem to be asymptomatic at the moment and his weight loss seems to have stablized so we are grateful for that much.

You should also know that today is the 10th Anniversary of Steven's diagnosis (although back then he was told he had LMS). We are grateful he has been fairly well for a long time and pray for many more years of the same for him and everyone else here.


3 Jun 2010

We met with Dr. Singer, a surgeon at MSKCC to see if perhaps he could remove some/all of Steven's tumors. Specifically, the largest (10 cm) in his pelvis area between his bladder and rectum. While the doctor feels he could do it without a needing to perform a colostomy, his opinion is that since Steven has no symptoms of blockage or pain he'd rather wait and see if another drug could help shrink and/or control the disease first. Right now Steven is on Nexavar and while it shrunk his tumors the first two months they are now increasing slowly. For now Dr. D'Adamo has added Valproic to the Nexavar but Dr. Singer thinks Steven might need a change. He has even suggested going back on Gleevec after I mentioned that Steven was taking 800 mg for 3 weeks while waiting for Nexavar and his night sweats were gone within 2 days. He seems to think, and so do I, that the Gleevec was helping.

So, while we did not walk out with a surgery date, we did have a somewhat positve meeting. Dr. Singer is going to consult with Dr. D'Adamo and we already have a follow up visit with Dr. D'Adamo a week from today to see where to go from here.

Will update futher as I know more.


8 Jul 2010

It took a few days for Steven's INR level to go down but his blood is finally thicker and they just took him down for a nephrostomy. I'm not sure why but they didn't want to use a scope to put in the stent. His bladder is displaced according to his last scan so maybe this is just easier. Hopefully his kidneys will respond and the hydrophrenosis will go away. They said they will keep him for a few days to monitor that this procedure does indeed work. After this we need find out how soon he can have surgery to remove or debulk his pelvic tumor. A month ago the surgeon thought it was a good possibility to perform the surgery without needing a colostomy and according to Sundays scan the tumor hasn't grown so I would like to think that is still the case. We shall see.

I will update as I know more.

Regards, Annette

8 Jul 2010

Steven came back from surgery about 7:30 pm. He has a stent and drainage tubes on either side of his lower back with the bags strapped to his legs. A surgeon, not the one that did the procedure came to check on him and said it was some perfectly. I certainly hope so! He couldn't tell me how long the drain and stent would be in place. He said that is up to his team of doctors. Hopefully, we will know more tomorrow.

Thanks to everyone for your thoughts, prayers and good wishes. It is more than appreciated and means a lot to us. Annette

15 Jul 2010

Well, it's been a rough two weeks but we finally got Steven home Tuesday night around 9:30 pm. He could not urinate on his own after having the foley catheter out for 9 hours so they had to reinsert it. Not fun for Steven! He now has two nephrostomy bags and the foley. This should all be temporary. He is weak, tired and isn't eating much at all at the moment but I hope he starts soon because he needs his nutrients to get back some strength. He has been refusing to drink Ensure but promised me that if I make him an ice cream shake with it he will drink it. We shall see.

So when we were sent home Tuesday night we were given instructions to call the urologist and his oncologist for a follow up visit within the next two weeks and to re start the Nexavar/Depakote combo today. We were already scheduled with the surgeon for today so see about getting rid of the pelvic tumor. Now when we left the hospital we were still under the impression that the pelvic tumor was causing the compression on the bladder which in turn was causing the back up to his kidneys and the inability to urinate. Imagine our surprise when the surgeon, Dr. Singer, told us that after reviewing the scan from the urgent care visit July 4, it is not the tumor but probably a problem with the prostate. I guess this is why he has the follow up with the urologist. I thought it was because of the nephrostomy. What exactly is wrong with the prostate I don't know, nor could Dr. Singer say. When we were in the urgent care the house doctor did and internal exam on Steven and she said his prostate seemed very enlarged. We have an appointment with the urologist on August 3 but we are trying to push it up. Hopefully we will get to the bottom of this and try to rectify it.

In a way it was relief that the tumor is not causing this but not knowing exactly what is has got me worried as well. Dr. Singer is not ruling out surgery in the future but says this problem must be attended to first. So, we hope to get more stability out of Nexavar in the meantime.

I will update everyone when we finally see the urologist and have more definitive answers and solutions.


19 Aug 2010

First, please be advised that this is probably going to be long, as all my updates usually are, sorry. I have been reading everyone's posts but not replying to anyone but please know that I am always happy for those with great scans, sad for those with not so great one, rooting for great results when someone has to have surgery, sorry for the newcomers and ALWAYS praying for my GIST family!

Well, it's been a pretty scary month for Steven. After he was released from the hospital on July 13, having had a bilateral nephrostomy and the need for a foley catheter because he could not void on his own, things went down hill for him. He never gained any strength back, couldn't eat or drink and pretty much just slept all the time. He had a regular visit with his oncologist July 29 and a blood test revealed Steven's calcium was sky high at 14. I had a feeling it was high because he was acting confused and disoriented. It was not his first bout with high calcium. He immediately had a Zometa infusion. The doctor suggested a night in the hospital for IV fluids but Steven didn't want to be in the hospital again and promised he would drink plenty of water. Unfortunately, he didn't drink his water and I ended up having to take him to the urgent care and he was subsequently admitted to the hospital. It took a few days for his calcium to drop. He continued not to eat and was very weak. During the time in the hospital Steven developed what the doctors believe to be sundowners syndrome. This is something that usually occurs with Alzheimers or dementia patients but can occur with patients that have been in a hospital for periods of time. Basically, your biological clock is off?? I do believe it started at home but got worse in the hospital. I cannot even begin to tell you the hallucinations that Steven was having. It was by far the scariest time in my life. I never left his side at the hospital for fear he may do something or hurt himself. By the forth night they decided to give him an anti psychotic drug, Zyprexa. He was a little calmer but still hallucinating. Two days after starting the Zyprexa they sent him home because his calcium was fine and there was nothing more they can do for him. He was given a 7 day supply of Zyprexa and it was to be left up to his oncologist whether he should continue or not. It took about 3 nights at home before Steven started feeling stronger, eating better and sleeping calmer, without hallucinations. I took a risk and stopped the Zyprexa on the forth night and he has been fine ever since so he no longer takes it.

Steven had a scheduled CT scan last Friday with a follow up reading later in the day. Unfortunately, the written report was not ready when we saw the doctor so the doctor reviewed it himself and declared Steven stable on 800 mg Nexavar (10 months) combined with Valproic Acid (3 months). BTW, he was taking 3000 mg of Valproic Acid but his dosage was reduced because high doses can cause confusion and they weren't too sure if the high dose had anything to do with the bouts Steven was having. He is now only taking 750 mg a day. With this news we decided to talk to the surgeon again about removing the tumor sooner so Steven could be rid of the nephrostomy and foley. Surgery would definitely be a risk because odds are Steven will lose his bladder and prostate but a urostomy seemed better than three drains and bags strapped to his legs.

We saw the surgeon today. He had the written report of the scan and it turns out that Stevens pelvic mass has shrunk 2 cm since July 7. This was very surprising news! Right now the surgeon feels it would be best to remove the external nephrostomy drains and try to insert them internally now. This was not possible originally because of the tumor size and Stevens condition but since Steven is stronger now and the tumor has shrunk the surgeon and urologist feel it is possible and that Steven should be able to void his bladder on his own then. So the plan is to do this first and hope for more shrinkage before surgery is considered because Steven does have widespread disease so surgery would not be curative but palliative. We are waiting for a call from the urologist to schedule the procedure.

So, that is the update on Steven. Thanks for your time and patience reading my post and I wish you all the best!!

Regards, Annette

Pam L

24 Feb 2010

Subject: nexavar's working!

Dear Friends,

I have been on Nexavar for two months and today's cat scan showed that the largest tumor is shrinking and the others are stable. So I'm to continue to stay on the Nexavar until the next scan. needless to say I'm very relieved. The Nexavar side effects have been rough. I fluctuate between diarrhea and constipation. I'm not sure which is worse. I'm also very tired much of the time. However it's all manageable as long as it's working!

I'm going to Dana Farber on March 14th to see Dr. George and get her take on other options if and when the Nexavar no longer works. I hope that time in in the far future, but I'm trying to cover all the bases.

Just as a short history I've had GIST since 2003, have had 3 surgery's and was NED on Gleevac from 2003-2008. Tried Sutent for a few months, no success. Started Nexavar December, 2009

I don't write often, but I read the e-mails every day and I marvel at the spirit and faith you show in your letters. We can't stop fighting!

Pam L.

20 Mar 2010

Dear Listmates,

I just came back from Dana Farber Cancer Institute in Boston seeing Dr. George and wanted to give you an update. It doesn't look like I'm a candidate for radiation or debulking surgery to alleviate the pain caused by one of the tumors pressing on the bowel. She felt that radiation doesn't have a good track record with GIST and that the tumors would probably return after surgery as they did this last time. So I need to find relief by pain med management. If I don't take the meds on time ( basically every 3-4 hours) the pain gets out of control and I have to wait it out for the pills to work. So I need to be much more careful to take the pills regularly. The pain stuff also makes me very tired and kind of spacey.

Dr. George went though kind of a game plan with me. I'll stay on Nexavar until the end of April when I'll have the next cat scan. If progression is there, then I'll try Tasigna. Although I have an Excel 11 she felt it was worth the try. If that fails then I would qualify for the STA- 90 trial. That's taking an IV of the stuff once a week in Boston for 13 weeks. The logistics seem overwhelming, but if I have to, of course I'll do it.

I'm hoping to have more shrinkage particularly in the pelvis by the next scan. The shrinkage would indicate that the tumors are dying and it should mean less pain. Time will tell. I went to see a GI doc also and he suggested taking only Miralex for the frequent constipation and when it turns to diarrhea not taking anything and letting just run its course. I've been doing that and it does seem to help.

I am feeling better and although the pain meds cause nausea I'll take that over the pain.

Take care,


28 Mar 2010

Dear Friends,

I'm having some problems with side effects that I was hoping you might have some suggestions for. I'm now taking 800 mg of Nexavar. The tumor that is pressing on the bowel is giving me a lot of pain. I'm taking 1200 mg of Dilaudid for the pain. To get continuous relief I need to take it every three hours. I am also taking Oxycontin, also for the pain every 12 hours. The side effects that are affecting me the most are extreme fatigue and short term memory loss. I also have nausea which happens mostly in the morning.

Does anyone have any ideas of what I can do to counter act the side effects? It's making my life pretty miserable.


16 Apr 2010

Subject: nexavar failed

Dear Friends,

I had a cat scan and the results show that the largest tumor in the abdomen has grow 10 to 20 % and of the 4 tumors in my pelvis, 3 have gotten slightly larger and 1 slightly smaller. So at this pint my oncologist feels that Nexavar has not worked and he wants me to try something else. A brief history: 20x 24 cm GIST resected in 2003. I went on 400 mg of Gleevac shortly after the surgery and was NED until 2008 when another tumor grew in basically the same place as the first. I then increased Gleevac to 800 mg and was NED for 14 months when another tumor appeared and I had a third surgery a year ago. I had a rough time with the surgery ( difficulty in healing) and in July, 2009 more tumors appeared in the stomach and pelvis. I then went to Sutent 37.5 continuously and that was not successful. I started taking Nexavar at the end of December and initially there was some shrinkage on the first scan but this one showed a reversal.

I did see Dr. George at Dana Farber and she thought the next drug to try would be Tasigna, but my oncologist doesn't appear to agree. He will be conferring with her and will send her the cat scan to look at. I'm feeling very disheartened and am very scared that I'm facing few options. No one is very supportive of more surgery because of all the trouble I've had with my previous surgeries.

I'm also dealing with pain caused by the pelvic tumors and nausea that may or may not be related to side effects of all the drugs I'm taking. I realize there is no easy answers here, but I wanted all you wonderful folks to know.

Sincerely, Pam

Robin of Clyde

30 Mar 2010

Hello all,

What an ordeal finally started Nexavar last night. First I was told no regular pharmacies could deliver it and had quite a run around with insurance and doctors offices and such. Finally got this CuraScript service to do it and for free. Still not sure the whys and wherefores of it all. Only took two weeks and I hope it did not grow! I start this week with two hundred a day and move next week to 400 a day. Looks like the ones I see on here that are on it it take 800. Does this seem to be standard? Maybe they will keep moving me up. Luckily it gave me time to recover a bit more as my body is not bouncing back so well. Just trying to accept what happens. I have only had the one small dose so no side effects yet. Will let you know how it goes later. Keep up the good work telling me your side effects and how you handle it is a comfort to not feel so alone. Take care everybody. Robin of Clyde

15 Apr 2010

I had been on Gleevec 3 and a half years, 3 months with Sutent where it grew quickly. I was operated on where they could not get it all and have been on Nexavar over a month 2 weeks 200 mg, 2 weeks 400 mg and now 2 weeks 600 mg. I exspect he will get me up to 800 mg soon.So far no side effects. I have lost 35 of the 50 lbs I put on on Gleevec and feel great. Everyone thinks I look like my old self except for after the operation my eyebrows and eyelashes turned pure white. I plan to have them tinted! I just hope it is working and will have to wait for my first scan. Encouraged that people have been on it for a year. Just happy to have this time feeling good and being able to do normal stuff again like walking more each day and my awesome holidays will start soon! Good luck to everybody. Robin of Clyde.

12 May 2010

Just a report in. So far so good on Nexavar. I got sent a welcome to Nexavar package 5 weeks after I started and then understood my problems. It mentioned to stay off dairy products and Orange juice and prune juice. Well my ravioli with cream sauce and creme brulee almost did me in. I was so sick up on holiday in Seattle. Now I know why! I am up to 600 mg a day and this week go to the full 800 mg. My doc has been raising me up every two weeks. Trying to keep my feet from getting too bad just creme them in morning and night. The package also has two kinds of creme for your hands and feet That was a nice gift. I really hope this is working. I hated to hear about the man for whom Nexavar was failing. I t scares me and saddens me as I want us all to do well. Any great success stories out there? Next week I am off for three weeks to Merry old England and Wales. A little scared about being so far from doctors but it is a big family reunion and right now feel good. Robin of Clyde

21 Jun 2010

I have now been on Nexavar for three months and had my PET scan results. I know they left microscopic GIST but nothing showed hot on my PET for both my cancers (also have metastic breast cancer.) So I am very happy. I really had thought it would not be good because have been in terrible pain with Gas and diarrhea. I had to move myself down while traveling in England to 400 mg. It was hard over there because alot of cream and cheese everywhere I went. Nexavar gives you problems with Lactose intolerance. But I did find Lactose free milk to travel with. I moved back up to 800 mg when I returned only to have things get so much worse. Thought it was cancer taking over and now that I know it is not it is a relief off my mind and I can deal better. The Nexavar nurse from the company has reccomended acidopholus which I have started and it has calmed a little. The doctor now gave me a prescription for another drug to help me produce pancreatic acid to break down the food. He said I have to remember my major surgery and this chemo drug that my system is just not working properly. I do hope the gas pains subside soon as I am losing weight because it doesn't make you want to eat for what comes after. But Nexavar so far working so I will deal. The company sends you sample creams and does have a great nurse to listen to your problems so hopefully can keep going. Robin of Clyde

8 Sep 2010

Dear George, Thanks for giving me hope for Tasigna. I am so happy it has been a miracle for you. It gives me hope that there is at least one more drug for me to try. Right now I am on my 6 month with Nexavar. PET scan to be next week on Tuesday and then will meet with the doctor on Friday. I am going through my scan anxiety something fierce today and cant stop crying. I have felt extremely sick for a week. Hoping this is just being on antibiotics (Avelox) for a week for an infection. Hopefully I have finished and will feel better. Trying to be positive and not think that I am not stable. Just feel like something is going on. Looking forward to the Summit. It will be good to be with people that understand. Just in a lonely hole today. Hate when I get feeling sorry for myself. Got to count my blessings. I really have had a super life and family cant ask for much more than that.

July 1998- Hormone negative breast cancer - chemotherapy

November 2004- Hormone positive breast cancer - chemotherapy & radiation

February 2005- Breast cancer metastisized to rib - radiation

July 2006- GIST diagnosed surgery hysterectomy partial intestines, partial colon, gallbladder removal - 400 mg Gleevic

October 2006- Breast cancer metastisized to hip- radiation

June 2007- Breast cancer metastisized to rib - radiation

November 2009 - Gleevec fails 25 mg Sutent continuous

February 2010 - Sutent fails surgery to remove numerous GIST cells

March 2010 - Start Nexavar

Robin of Clyde plugging along!!! You know you've had a lot of radiation when the guys in the spacecrafts can see you glowing on Earth.


15 Apr 2010

Subject: Starting Nexavar

I got my prescription today for Nexavar. Is there anyone who has been on Nexavar for a significant period of time? Sutent and Tasigna did not work very long, so I am a little bit worried about Nexavar. Marilyn W

4 July 2010

Hey all, just got in from mda and side trip for a family reunion in east texas. Not good news. Nexavar isnt working. Going to try next drug (cant even remember the name of it now) Last one on list. Then it will be trial drugs. Everyone please pray. I need a miracle. Marilyn W

Ben A

15 Apr 2010

Ben has been on Nexavar for several months. It seems to be keeping the tumor at bay. Worst side effects are terrific leg cramps. It doesn't play havoc with his hemoglobin like Sutent did and he seems to feel better overall on Nexavar. Good luck and let us know how it works. You are in our thoughts and prayers.

Molly in NC

9 May 2010

I just wanted to let everyone know that my GISTer husband, Ben, is in the hospital. It appears Nexavar has failed and the GIST tumor is spreading rapidly. It has moved out of the liver, has pushed all the bowels to the left side of his abdominal area and is now pushing the kidneys as it has extended to the pelvic area. Please keep him in your prayers. Our goal is to get him home for peace as we are headed toward the end of this very brave and valiant fight on his part.

Molly in NC


22 Jun 2010

Subject: Good 3 month scan on Nexavar

Hi all - I'm not sure I've posted here before but I've lurked since my '06 diagnosis. I've really appreciated all the news people share with each drug because I feel like it's a place to find reassurance that our options continue.

I was on Gleevec 3 years before I developed resistance, Sutent did not work at all. I've had 2 surgeries in the past year and have been lucky that all but the 2 lesions on my liver have been resectable. I had the most recent surgery in March to remove an 8cm mass behind my stomach and started Nexavar right after. I didn't qualify for the Regorfenib trial because of the surgery.

I got the results of my 3 month scan today and am thrilled to say that the liver lesions remain stable and nothing new has popped up since surgery! I haven't been able to get above 400mg because of hand/foot syndrome and nausea & diarrhea and was afraid it wouldn't work when i couldn't make it to 800mg so it was a great surprise.

I just thought I'd let others know Nexavar can work. angie

21 Sep 2010

Subject: Nexavar still working!

Hi, I just thought I'd check in and say that I received the results of my latest scan - 6 months on 400mg Nexavar - and everything is still stable. Haven't been able to get over 400mg because of the side effects but that seems to be ok.

After 3 years on Gleevec and no benefit from the Sutent, it's great to be able to post and let people know that Nexavar is an option and that it's still doing what it's supposed to. We like options right?

Bob T

17 Aug 2010

I got my latest results from yesterdays scan. There is new growth in the jejunum, increased liver and peritoneal metastases. Hopefully nexavar will be a better worker for me.

Bob T

20 Aug 2010

Well hello everyone. I am finally getting over the shock of being told on Tuesday that Sutent was not working for me. I had a grand total of 4 months of getting used to Sutent and now I am on my 3rd day of Nexavar treatment and was wondering if there were any Nexavar users willing to share their experience with this drug. I am particularly interested in the exon, length of time on the drug and experience with side effects and what you may have done to minimize the side effects. I have tolerated both Gleevec and Sutent fairly well, but you never know with these powerful drugs which one may be the one to cause some problems so I am trying to get as much info now as I can. Thanks for any advice.

Bob T


27 Aug 2010

Subject: Which to try next, Tasigna or Sprycel?

Since May, most of my husband Gary's tumors have each grown about a cm. One tumor has grown 3 cm, and only one tumor has reduced in size.

Gary has lost 100 pounds since his dx in 2007 (removal of original tumor with the spleen and some of his stomach). He has been through Gleevec, Sutent, and currently Nexavar. His initial tumor mutation was exon 11. He has had recurrence on his stomach, and there are tumors on the liver, above the right kidney, and throughout the abdomen. He had swelling and leg cramps on Gleevec. He had very few side effects from Sutent, and had a great appetite on it, but it only lasted 3 months. On the Nexavar, he has lost most all muscle mass and tone, most of his appetite, and much of his hair. His tumors have always had a mixed response to the medications. (And, he's working full time so that he keeps busy and he has health insurance to cover everything.)

The oncologist is letting us research Tasigna and Sprycel over the weekend so we can all make an informed decision.

We want to know not just the scientific information we can look up, but if there is anyone with positive results...even dancing with NED on either of these, and what actual side effects people are experiencing. The oncologist is concerned that one of them can slow heart rate, and has a black box warning about it. (Sutent did as well, however, and Gary felt well on it.)

Blessings to everyone. We don't write much on here, but have come to love and pray for everyone on here.

Brenda & Gary from Illinois

27 Aug 2010

Subject: Re: Which to try next, Tasigna or Sprycel?

I have done both but I think a coin toss would give you just as good a chance as to a good selection. I suppose I had better tumor control on the Dasatinib (Sprycel) but 120 days is really not what I call tumor control. We even tried even higher dose 100 mg instead of 70 mg. That was a really bad idea. Nilotinib (Tasigna) was real easy on my body except it did not control tumor growth. This is my experience YMMV!!!! On Sutent now for 35 days so don't know if it is working or not alternating 25mg one day 37.5 the next continous.

John B dx 1999

28 Aug 2010

Hi Brenda & Gary,

I was dx with Gist at the age of 33. I was on Gleevev for 6 years, Sutent for 2 months and Tasigna for 13 months, I have been on Regorafenib since May. Tasigna was easily the best drug side effect wise. I felt great however it stopped controlling my tumors after a year. If I can answer any specific questions please don't hesitate to contact me. Best of luck!