Gist Tumor

My husband started getting sick the end of May 2004. He was put in the hospital in June and had an endoscope done and found out he had a gist tumor. He had surgery done in Morgantown, West Virginia. They sent the tumor off to several different places. It came back cancerous. In August we had found out that is spread to his liver. They had to prolong his chemo due to infection after the surgery. He had the five day treatments once a month of doxiruben and ifosomide. He would end up in the hospital two weeks each month. This went on until January. He could not take the last treatment because he had got so sick. They started him on the Gleevac 400mg. He has been on this for two weeks now. If anyone else out there is going through the same thing and had results. Please reply.

Ann,
My husband (52 years old) was diagnosed in January 2005 with GIST, - an 11cm tumour in his stomach, as well as a 7cm ulcer. There are nodes in his pancreas and liver. We work in Paris at present and all discussion on this has been with french speaking doctors (my french is not that great - my husband's is a bit better).
He has had no pain or any symptoms ( just thought he might have an ulcer after some slight bleeding). Everyone put his weightloss and tiredness down to long hours in a stressful job.
He was initially given a prognosis of 1 - 5yrs, but was immediately sent to an oncologist who started him on Glivec twice a day totalling 400mg.
We have seen a reduction in the stomach tumour of 30% and the pancreas now appears clear. However, there are still a number of nods on both sides of his liver.
He enters hospital in Paris tomorrow for stage one of work on the liver - they will try and clean up one side before removing the other, and possibly in tomorrow's operation, removal of the tumour from the stomach. His surgeon is pleased to be able to operate and the prognosis is sounding better and better.
I can only hope that this information gives you some hope and wish you all the best with his treatments.

I am so happy for you. I lost my husband April 25th to a sepsis blood infection from his port. My husbands tumor was 6cm on one side of his liver and and spots on the other side. They had done a scan aprox. 4 weeks ago and it had improved since November. They said that there was nothing they could do because of the size of the tumor. The gleevec didn't have time to work because he was only on it for two weeks. He started getting fluid and was in the hopital for 10 days they drained off 2.9 litres off his right lung. He was home for 6 days and started acting different and was put in the hospital again and drained almost 4 litres off within 5 days. That fifth day he was sent to ccu with a high fever, blood pressure dropped and heart rate went up. The doctor said it was a blood infection. Nine days later I lost him. I hope everything goes well, my husband was only 48 and he was doing do well until this happened. I miss him dearly. Good luck

I am so happy for you. I lost my husband April 25th to a sepsis blood infection from his port. My husbands tumor was 6cm on one side of his liver and and spots on the other side. They had done a scan aprox. 4 weeks ago and it had improved since November. They said that there was nothing they could do because of the size of the tumor. The gleevec didn't have time to work because he was only on it for two weeks. He started getting fluid and was in the hopital for 10 days they drained off 2.9 litres off his right lung. He was home for 6 days and started acting different and was put in the hospital again and drained almost 4 litres off within 5 days. That fifth day he was sent to ccu with a high fever, blood pressure dropped and heart rate went up. The doctor said it was a blood infection. Nine days later I lost him. I hope everything goes well, my husband was only 48 and he was doing do well until this happened. I miss him dearly. Good luck

Can anyone give me information that has had gist tumors. How long have they had them. Are they being treated with gleevec and did it work for them . I have a son 33 who found out he has 20 tumors and are magliant april 2006.

Jennie,
My husband has been on GLEEVEC (GLIVEC - in Australia) for 15mths. He has had his stomach removed and stillhas tumours in his liver. They are 'controlled' according to his oncologist. He has major problems eating - but this is due to the surgery and this has led to a massive weight loss. The Australian doctors have given us a worse case senario than the French - saying that Glivec has a viable life of 2 - 3 years before the cancer can overcome it. But I have noted that there is another drug RJ something that works on those that Glivec does not. We are starting to investigate that now, as it is still on trial in Australia. The French seem to have more knnowledge of these types of tumours, and I advise you to check out as many internet sites as possible.
One thing I will mention about GLIVEC is a slight personality change I have noticed about 3 mths after my husband starts taking it - he becomes very short tempered and tends to 'blow up' dramatically about the smallest thing. We have grown to live with this and just take it as part of his treatment.

Wishing you and your son all the best, and contect me with any questions.

Dear Ann,
I read your message and am deeply touched. I
am so sorry that you are going through such a
difficult time. My brother in law just had
a tumor removed from his stomach but the gist
tumor already matastisized to his liver. He
just started glvec and is having horrible side
effects. He has three small children and is
incredibly depressed about the prognosis. Do
you have any suggestions? I would like him to
try a support group so he can talk to people
like you and your husband. Please give any
feedback you can and stay positive. Thanks.

Clare L.
--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

P.S. He has been to Slone Kettering Cancer Hospital