Dear Gist Community,
I would like to connect (receive your e-mail address) with any and all GISTers that are exon 9. We are a particularly difficult segment to treat because of our abnormal KIT pocket. Right now I and another exon 9 patient, that I have become acquainted with, are both watching our tumors shrink on a combination of drugs. We had both been through varying dosings of Gleevec, Sutent, Nexavar, (I on Tasigna the other exon 9 on dasatanib), we both met during while we were on the STA9090 trial. All these drugs had no effect on our disease as we grew through all of them (completely unimpeded) and I would like to learn more from other exon 9's and at the same time connect with them as I think we can help each other out in comparing notes.
Looking forward to hearing from any and all of you with exon 9 mutations,
Jerome - girolamo@IX.NETCOM.COM
Hey Exon 9 Folks! I appreciate that there may be shy people out there who would rather have an off-list conversation about exon 9, but I hope that you all will post to the list, at least as a summary. Please add your story here!!! The value of GSI archives for new patients with exon 9 mutation will not contain your wisdom otherwise. Jerome, if you assemble information on this topic, can you post summaries to the list? At least 12% of GIST patients have the exon 9 mutation. Cheers! J
You can also send your stories to me at BBR950@aol.com and I will add them for you.
Jerome and I met during our trial of the STA9090 innovation last year, by his careful attention to others making mention here online of the same trial. He began the trial before me, but our experiences mirrored each other very often. At our first conversation, the importance of mutation type became of more importance than some attribute as we described our (mutual) 'met condition' as remaining 'untreatable/non-responsive' through nearly 5 different medications each and over 4 years for me, 7 years for J. He's got me beat in surgeries at nearly twice my count of 3 majors, though with many additional outpatient procedures that I can still feel in the recovery memories.
At present we are both termed 'responsive' with 50mg Sutent and 4mg Rapamune- a MAJOR first after hearing up until that moment that I was 'untreatable, except surgery being the Golden Rule'.
So there are some common questions that we kick around in conversation always:
How are you doing with any side effects and do you have any new 'magic' for them.
(describing) How the multiple tumor sites are CLEARLY reducing with less pressure, pain, etc. When is the optimal time for a debulking surgery as an elective event. Is surgery, at the first onset of disease the better time for getting hit by the truck (joking about the hospital recovery, yet again). What ya gonna do now, since there's no short term worries weighting your Psyche down?
So there's also some common benefit here for others too, as you see we've persevered, we've dared and we've shared as much as we can with anyone/everyone we can. Just like everyone else. There are many new meds in discovery and lab as I write. Let's hope for better times ahead, as I wish the best finds You and Yours now.
Best regards always,
I also am an exon 9 currently on Sutent and am stable. I had the whipple procedure removing a 13cm tumor from the tail of my stomach. K
Hi Jerome, My husband is Exon 9, he had a 26 cm tumor with mets discovered during emergency surgery Dec. '06. Gleevec for 10 months, Sutent for 30 months, now on Tasigna for two months and a recent CT scan showed still NED after surgery in Dec. '10 to remove a 4 cm recurrence of his primary tumor. He was just reduced to 400 mg Tasigna from 800 mg due to possible toxicity.
Jerome, I am an exon 9 and had a 9cm tumor removed with clear margins. I had a mitotic rate of 34/50. On 400 mg of gleevec for 2.5 years then ramped up to 600 and now on 800 since January. I have mets to the liver. I find out if 800 mgs is working on April 20th when I have my next scan and visit with Dr. Heinrich.
Jerome I am Exon 9 also, I get my second scan next week so far no growth. But we did increase to 800mg as soon as we got the mutational analysis back.
Mi daughter is an exon 9. She was diagnosed on January 2006 at the age of 27. Her tumor was resected, with no clear margins; it was about 15 cm big, with a mitotic range of 5/50, it was a tumor with high risk of recurrence.
She started Gleevec on Feb 21st, the same year, 600 mg. She could not tolerate 800 mg. She has had no other surgery or recurrence. She remains NED after her last scan in February 2011.
V in Bolivia
I have exon 9 mutation and on 800 mg of adjuvant Gleevec for almost two years now. The 6 cm GIST had ruptured and resected from my jejunum in February 2009 when I was 67 years old. Please include my name - John - in your list of exon 9 GISTers.
Cheers, J, in Canada.
I have the Exon 9 mutation....an 11cm primary tumor discovered in Oct. 2009, with multiple small liver tumors. I was started immediately on 800 mg of Gleevec, which I now tolerate fairly well. The tumor shrank to 3.5 cm over the first 6 months and the liver tumors seem to be stable. My Dr. at MSKCC has decided against surgery. I have scans every four months... no further shrinkage but so far no growth.
Include me in your "9'er" list. I had a 10cm hi risk jejunal mass removed in 12-06. I have been on Gleevec at various doses since 2-07. Once the mutation analysis came back, I tried higher doses but ended up back on 400 mg. I get regular scans and so far,(fingers crossed,) am still NED. I am curious as to the progression of drugs tried by other "9'ers" after they failed Gleevec and Sutent.
Warm Regards, G
I am exon 9 diagnosed in 2002. I Had tumor removed which the surgeon described as the size of a goose egg. I did not get the size in cm, but know it was fairly large. I went from 400 mg of Gleevec to 800 and for a period 1200, but could not tolerate that level. I have been on Sutent at 37.5 mg with no wash out period for the past 15 months. My last scan in Jan. 2011 showed completely stable, with signs of necrosis in large areas. I will be having MRI and blood work on April 20th. and see Dr Trent on Thurs. the 21st. I am 77 yrs. old and still work part time as a bagger at a supermarket, where I have been averaging around 25 hrs. per week. I have worn a pedometer several times and average walking a little over a mile for each hour worked. I lift 24 packs of beverages, 40 lbs. of cat litter and pet foods etc. The worst side effect I have is diarrhea which I just work around unless it becomes too bad, and then I take a generic, over the counter med. I have not had problem with hands or feet. So far I have not had much problem with elevated blood pressure. I still garden and grow plants for sale to support a scholarship program I have endowed. I will let you know how it is going after I see Dr. Trent on the 21st. H.
You've asked for replies from people who are Exon 9. I am exon 9. I was diagnosed in September 2010 with a 7.5 centimeter intestinal GIST tumor. The mitotic rate was 1-2/50. They got clear margins and did not find any metastases. I am not on adjuvant Gleevec. I had my six month follow-up scans (I decided on MRI's of the abdomen and pelvis in a chest x-ray because I had already had 10 CT scans in the last six months) and I am NED. Hurray. I will continue with the MRIs and a chest x-ray even though it wasn't much more difficult test (almost 2 hours for the MRIs and all the breath holds) but I just really don't want to continue to expose myself to so much radiation every three months. Of course, I am also interested in any information you collect about people with the Exon 9 mutation.
Paul is exon 9. Had 17 tumors removed in Dec. 2010. Gleevec and sutent had failed. Dr. Morgan has recommended GDC 0980 trial drug. We are waiting for the call for this trial. Paul will need to be screened to see if he is a candidate. Hopefully we will be in Boston this month. We are excited and anxious to get into this study. Dr. Morgan feels this is the right drug for him.
Paul is doing well just tired. Naps alot. Some cramping.
Good to see others are in the GDC 0980 trial and are doing well.
I, too, am a deviant from Exon 9.
While at home and after my evening meal, the 2 cm "alien" exploded inside my small intestines on September 10, 2010. I was rushed to the ER where a CT scan and ultrasound were performed. When I left the ER there was no definitive diagnosis. Three weeks later I was sent to a local surgeon and we debated whether to remove/repair the damage to my small intestines since I appeared to be healing/recovering rather well. Another CT scan was performed and we decided NOT to leave it alone. When I awoke from surgery the surgeon referred me to a local cancer doctor; his reference to the cancer doctor was how I found out I had cancer. When I visited my local cancer doctor that is when I found out about the Exon 9 deviation. What a long, strange trip this has been!
I am currently seeing Dr. Mo at the University of Iowa Hospitals and Clinics and am receiving excellent care. He has treated several patients with GIST and I feel comfortable contacting him with any questions or concerns I have. I am currently NED, but we will be doing CT scans every three months to monitor for any GISTs that may develop since my tumor burst. We've decided I need to be on 800 mg of Gleevec for another 2 years. I've been on Gleevec for 6 months now and I appear to be adjusting to the side effects. Eye area swelling, fatigue and "Gleevec Brain" are my main symptoms now. Of course I never know when these side effects will show themselves. Currently my hands easily bruise and then split open. Guess I'll have to stop working around the house - oh darn.
I am still such a noob about all of this. I research to a certain point about the Exon 9 deviation and then find nothing. This site is where I have found most of my information and have learned so much from the community. I look forward to seeing more information from other 9'ers.
My husband John is a Exon 9 gister. We started our Journey in 2005 with anemia and the finding of a tumor in his duadunim that had been missed in 2004 when he had bleeding and was diagnosed as an ulcer and it looked smaller in this CT because it had entered the intestine. After surgery they discovered he had 12 liver mets. went on 400 Gleevec for 6 months with growth so then 800 gleevec for a year. Became too toxic for him and Dr. Tap Changed him to Sutent 25 every day with no wash out. We still continue that now. He had a new growth in his Oct. scan biopsied it and then did ablation rather than change meds. since sutent was still working on the other 12. That is where we are now. Dr. Tap is leaving to go to Sloan Kettering. Taking Zofran and compazine for the nausea and oxycodone for the pain mostly back pain. Would really like to hear from other niners as I,m sure we are coming to the end of Sutent since we had that one new growth. Isn,t it funny how we always refer to this disease as ours? Hang in there as I'm sure a cure is on it,s way. It has to be.
I am an exon 9. I started 400mg of Gleevec in Feb 08. My tumors grew. I had the 9cm pelvic tumor removed in Aug 08 with clear margins. I already had metastases in my liver. I went to 800mg of Gleevec in Sept 08. By Dec 08 Dr. D'Amato started to see halos around my tumors. I was switched to 37.5mg of Sutent continuously. In June 09 I dropped to 25mg of Sutent because of the side effects. I was good until May 2010. Four tumors were growing and one had uptake on the pet scan. In June 2010 I had the right lobe of my liver resected and then resumed 25mg of Sutent. In Nov 2010 I had RFA done on the last four tumors in the left lobe and I resumed taking 25mg of Sutent. My last cat scan showed the 4 tumors smaller and the RFA successful. Hopefully, those 4 tumors are dead and no new ones grow.
Vickie is wanting to hear from other exon 9 patients and their experiences. I am exon 9 and perhaps an unusual one since Gleevec has been working for me for over 10 years now. I started on 400 mg which didn't work and was immediately switched to 600 mg which worked very well and which I have been on ever since. At one point I was told that my exon 9 was a slightly unusual variaton on that pattern. They are guessing that I am monoclonal (only a single type of GIST present) which may explain my good success. I was on the genetic study at Dana Farber which determined that I don't have any indication of inheritable GIST. Hope this helps.
My GIST was discovered in January of 2003... after an initial diagnosis of "ovarian tumor". I had tumor debulking surgery at that time....have been on either 600mg or 800mg of Gleevec ever since.
Recently a lesion/tumor was found on my right kidney. The decision was made to do a biopsy and RFA (Radiofrequency Ablation) at the same time. It turned out to be Renal Cell Carcinoma. Good thing I was being monitored for GIST recurrance, because the RCC was caught early and I did not have to loose a kidney. Last blood work showed that I have not even lost any kidney function. The RFA itself was relatively easy....they put out out, do the procedure...they may or may not keep you overnite. Either way, you're out of the hospital soon after the RFA or you're home the next morning. No pain or recovery to speak of.
I am Exon 9....codons 502-503 AY/AY Insertion/Duplication mutation.