Gastrointestinal Stromal Tumor

Question: A RARE GIST(gastrointestinal stromal tumor) CASE HELP?? My husband was just diagnosed with a gist he has had recurrance, and more tumors have developed, i need help and information if there is anyone out there who can help, we have sent his case everywere and everyone says to try gleevec he has been on it for 15 days now, not to many results, but the problem is he keeps vomiting he vomited before he took gleevec because of the tumor putting pressure on his stomach so he is throwing up for 3 weeks now is on ivs, he has not gone to the bathroom, only urinating, and he vomits 1 to 2 hours after taking gleveec, i have not found anything helpful so far is there any help i can get regarding his vomiting the doctors here say that he should give gleveec a month to see if the tumor shrinks becuz docs say it is inoperable right now, and at the same time he feels pains from the tumor like its growing so what can we do? if there is anyone who knows how i can have his case read to doctors in america or support please thank you

Answer: Is he taking Zofran or any other meds to control the vomiting? If not ask your husband's oncologist for an RX or some samples ASAP. Zofran comes in an injectable form that works almost immediately. He needs to do whatever he can to keep the Gleevec down so that it can start working. Apparently Gleevec starts working quite quickly and effectively against GIST since changes can be seen on PET scans very soon after the drug is started. Do whatever you need to do to keep those pills down and then give the medicince time to work. I think Gleevec could be just as effective for GIST as it was for CMLeukemia - which means it could turn having a terminal cancer into having a manageable illness. good luck to you both Oncologist. 2008;13 Suppl 2:4-7. Response evaluation of gastrointestinal stromal tumors. Choi H. University of Texas, MD Anderson Cancer Center, Houston Texas 77030, USA. hchoi@di.mdacc.tmc.edu Clinical management of patients with gastrointestinal stromal tumors (GISTs) has dramatically changed with the introduction of novel therapeutics, such as imatinib mesylate. This has created a need to re-evaluate the existing criteria used to assess treatment response. The current Response Evaluation Criteria in Solid Tumors are based on unidimensional tumor size, and do not take into account changes in responding GISTs such as a decrease in tumor density and decrease in the number of intratumoral vessels with computed tomography (CT). Positron emission tomography (PET) has been found to be highly sensitive in detecting early response, and to be useful in predicting long-term response to imatinib in patients with metastatic GIST; however, widespread use of PET is limited because of a lack of scanner availability and cost constraints. Modified CT criteria using a combination of tumor density and tumor size are promising in early response evaluation, and have excellent prognostic value. Identifying appropriate treatment response criteria is essential to optimize treatment for patients with GIST. PMID: 18434631

Question: Help?? Vomiting, Gastrointestinal stromal tumor, gleevec??? hello, is there anyone who could please help me, my husband just recently got diagnosed with a (Gist) doctors thought it was liposarcoma but with newer tests turned out to be a gist, my husband has had two surgerys to remove it, and the last one was hard to remove because it is in a dangerous area of the stomach, the tumor is 8x8x8 and it is blocking the intestine, everytime he wants to eat he keeps vomiting food stays for a while but keeps coming out acids from his stomach and when he drinks water he vomits right away, hes been vomiting for more than a week and is put on iv's and taking medicine for vomiting but nothing is helping, the doctor gave him gleevec and he holds it in for 2 hours or more in his stomach without vomiting but does gleevec work even if he vomits after the 2 hours, if anyone knows please provide me with information what to do, we are hoping the tumor will shrink in size but how long will it take to see progress, if he eats he will feel better please i need information, and we are also out of the country, and his case is rare here and there are only 2 doctors that know of this disease but i dont have good information, were can i get information or if i can send his full report to an online organization or something that can help me figure out with his case, i dont know what to do and its been really hard for the both of us, what can i do thanks for ur help if there is anyone

Answer: There are some excellent online support groups for GIST that can directly help you with your situation and offer better advice than anyone here can. Contact them: GIST Support International http://www.gistsupport.org/ LifeRaft Group http://www.liferaftgroup.org/ GIST Wiki http://gistsupport.medshelf.org/Main_Page GIST Cancer Research Fund http://www.gistinfo.org/ Best wishes to you. If he is having trouble with vomiting you should call his doctor immediately. There are meds he can take that will ease that problem. Call his doctor with any concerns . .day or night. For more support you can contact Cancer Care . .they might be able to help you as a caregiver as well as offer suggestions for your husband: CancerCare http://www.cancercare.org/ Hang in there.

Question: About how much time for a person with gastrointestinal stromal tumors (GIST) to live?

Answer: A long time. Gleevec can cure a lot of people with GIST, too. there is another new drug on the market called Sutent. GIST is by no means a death sentence!!!

Question: Does anyone know about Chemo Embolization on metastatic GIST to the liver (stage 4)? I was diagnosed 3 yrs ago and hospitalized because of internal bleeding caused by a rare cancer called "Gastrointestinal Stromal Tumor" or GIST that had broken through the wall of my duodenum. (1st part of my small intestine) It was in the fourth stage, as it had metastasized to my liver. I had two surgeries and now I'm on chemo. It shows signs of resistance to the 2 kinds of drugs that are out there for it, and now they want to flood my liver with the Chemo. I don't feel completely comfortable about this since I feel much better than I have in a long while and Im tired of feeling tired and sick. My last oncologist doctor said that sometimes the tumors can look bigger even when they are not because the tumors fill with water when they are dying and then they lose the bulk as they drain. They see a few new tumors on the scan, but could that be because they are filling with water and so now they are noticable on the scan? Pray for me that I will know what to do.

Answer: You ask several important questions where you really need the help of an oncologist you really trust to help you make your decisions. You don't say what chemo drugs you have done in the past or what you are using now but there are multiple oral drug therapies for that are effective for GIST tumors. Chemo-embolization is a common procedure for GIST tumors in the liver. http://www.gistsupport.org/treatments/current-treatments/hepatic-artery-embolization.php Since you feel ok right now then you do have time to get second opinions about the direction of your future treatments. http://www.emedicine.com/med/topic1179.htm Are you a member of the ACOR GIST listserv? If not, I'd join immediately if just to be able to read their Archives. They currently have 576 members who either have GIST or are caregivers. You could ask questions from others who have gone through these same treatments for the same tumor. You would get much better quality answers than asking these questions on a general cancer board. THE ACOR cancer lists are by membership only so as to keep out spam and they are also moderated. If I was in your position I would join, read and search the past Archives and then ask the same questions on this listserv. http://listserv.acor.org/archives/sti571-gist.html I'm guessing you do have new tumors but there is no reason why you can't take the time to make your own decisions about the direction of your furture treatments. Do the leg work, get some second opinions, then get those tumors knocked back. If you do opt for the embolization then get a surgical oncologist who specializes in this specific procedure. good luck

Question: GIST (Gastrointestinal Stromal Tumor) has spread to the liver. A family member has been diagnosed with a GIST in the stomach and a CT scan has shown it has spread to the liver. He is having surgery to remove the tumor in the stomach and chemo will be used afterwards. If the GIST has already spread is there still a chance it can be cured from surgery?

Answer: GIST often metastasizes to the liver and gleevec (Imatinib) is used to control the disease. There are also other possible treatment options for GIST that has metastasized to the liver which includes radiofrequency ablation (RFA), hepatic artery embolization, and surgical removal (depending on the extent of tumor or mets). Usually treatment is not limited to just surgery if the disease has spread. There will be a multi-modality approach . . and even though mets to the liver is serious . . I do know a young man who had nine of his liver mets destroyed using RFA and he has been no evidence of disease for over two years. There are many online support groups for this type of cancer. These are great resources to ask questions and find out all the latest treatments being offered. Many of these people can direct you to the medical staff who regularly treat this disease and make recommendations about which facility serves this population the best. Because this is a rare tumor, it is critical that the family member be seen by an oncologist that specializes in GIST . . either a sarcoma specialist or at least be guided from a sarcoma center. GIST Support International http://www.gistsupport.org/ LifeRaft Group http://www.liferaftgroup.org/ GIST WIki http://gistsupport.medshelf.org/Main_Pag… GIST Research http://www.gistinfo.com/ Global GIST Network http://www.globalgist.net/ You can also try the email ListServ groups at Association of Cancer Online Resources: www.acor.org/ Good luck.