CancerCompass message board discussion started by Brenda S. on 7/29/2002 http://www.cancercompass.com/message-board/message/all,465,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Has anyone taken this medication? My doctor is putting me on it for sarcoma. What I have read sounds positive. I was just wondering if anyone had taken this medicine and could tell me what if any side effects you had? Brenda S. Mon, 29 Jul 2002 00:00:00 GMT I have been on Gleveec for almost 2 years. I was in a study group at UCLA. At first I had very positive results. But in the last 5 to 6 months I have not been seeing the same results as I had at first. My tumors shrunk by 30 to 40% but it has not shrunk nor grown in the mean time. I have just come from my Doctor about 1 hour ago and the news is not very good. He believes that I have built an immunity to the drug and we need to look into other treatments. I have GIST which is non operable and does not react to chemo, so it seems that what I thought might be a miracle may turn out not to be. If Gleveec works for you as it does for almost every one you will see fantastic results from using it I highly recommend it, it is very expensive costing about $2300 for about 100 pills. Gleveec does have side effects - one is nausea and vomiting this will taper off over time but not 100%. Also, I have been very weak and tired all of the time. I also have had some problems with rashes and blisters they are unsightly but are not painful and some times they do bleed so always have a Band-Aid with you. Good Luck this really does work for most people and still may be working for me. More questions please write and I will try and help any way I can. Marshall Marshall M. Mon, 14 Oct 2002 00:00:00 GMT Marshall, Please let me know what disorder you have. My husband has been on Gleevec for about 8 months, and he says his food tastes burnt. Did your food taste burnt? Thanks, Bobbie Bobbie Y. Sat, 19 Oct 2002 00:00:00 GMT Bobbie, I did have a problem with the taste of food but not one of tasting burnt. I lost almost all of my taste for food except every thing tasted very salty. What is funny about this is I have always over salted my food. It must be coming back to haunt me. Marshall Marshall M. Sat, 19 Oct 2002 00:00:00 GMT Dear Marshall, I hate to keep bothering you. But how many mg did you take of Gleevec a day? My hubby takes 400 mg a day, Maybe that's why everything tastes burnt. By the way, What did you say you were taking it for? I think they're starting to give it for a lot of different types of cancer. If you don't mind, what's your age? Ron is 54. Thanks, Bobbie Bobbie Y. Sun, 20 Oct 2002 00:00:00 GMT Bobbie, You are not bothering me by asking questions about Gleveec or any other drug I maybe taking or have taken while fighting the cancer. I take 600 mg a day. At first I was taking 800 mg daily but I had lots of problems at that dosage and after about a year I was reduced to 400 mg but we found that the dosage was to little and was doing nothing in the way of shrinking tumors. I was changed to 600 mg a day now and it still looks like it may not be enough or as I stated in my last note the Gleveec may not be working at all which leaves me out in the cold as far as Gleveec goes. You asked my age I am 61 years old and I take the Gleveec for GIST or Gastro intestinal sarcoma tumors I hope I spelled that all correctly. :-) When I got into the program at UCLA they as far as I know were only giving Gleveec for GIST or some types of Leukemia which it was approved for even before I was in the study program. If you have more questions feel free to write to me. I may be able to help, I hope. God Bless, Marshall Marshall M. Sun, 20 Oct 2002 00:00:00 GMT Hi Marshall, It's me again. I was just wondering...have you started taking Thalidomide yet? Or have they said anything about it to you? My husband also takes 200 mg a day of thalidomide. It has shrunk peoples' spleens, and it didn't help him or his spleen. But his cancer is progressing really fast. I think this is his last option. Who knows...tomorrow could come a miracle! We sure are cutting it down to the wire. I don't know about you, But our nerves are shot. We've only been going through this for 14 months, I'm sure your a little short on nerves. Well I meant just to ask if you knew about Thalidomide. Thanks again, Bobbie Bobbie Y. Sun, 20 Oct 2002 00:00:00 GMT Hi, My husband Rich has been on Gleevec for 17 months now. He has CML. His results weren't so good for the first year since he was only on 400mg (he is 6ft,4in & weighs 200+ lbs) then his level was elevated to 600mg. Then is when we really started seeing results...however...He is also now experiencing nausea, weakness and fatigue. Other than that not much more. Good luck in your treatment...Linda J. Richard J. Sun, 27 Oct 2002 00:00:00 GMT Did he get worse before he got better, or did he stay the same? I am taking Gleevec now for sarcoma. My last CT reveal that my tumors grew. I was just on 400 mg. I am not a small person either. My doctor told me I could increase 500 mg. I have not had any side effects, but I do not think I am at a therapeutic dosage. Brenda S. Sun, 27 Oct 2002 00:00:00 GMT Hi Linda, My husband has Myelofibrosis, I believe you said your hubby had CML, is that Chronic Myeloid Leukemia? They put my Ron on 600 mg. a day last wk, up from 400 a day, Plus the 400 thaldomide. He's getting a port-a-cath Tomorrow. I ask his hem/onc, why they haven't put one on him already? He said he didn't think that Ron would of lasted this long. You talking about somebody being mad, I was furious. So just had to vent, that out of my system. I'm sure you understand. I hope your husbund is feeling well. Please write back and tell me about CML. I've been told my husband's disorder could go into CML. Thanks for any information. Bobbie, wife of Ron dx myelofibrosis 2001 Bobbie Y. Tue, 29 Oct 2002 00:00:00 GMT Hi Brenda, My mother was on Gleevec about a year ago and a half ago. I believe she was taking 400mg/day. She had some nausea and like others have said she said her food tasted salty. She lost her appetite altogether. She has always enjoyed food. A year ago she had surgery to remove what they thought was going to be 3 tumors and found 18. All containing high levels of gleevec. They told her it was getting to the tumors but not shrinking them. Because it is so expensive they took her off of it. Since then she has had several tumors reoccur. She has now been told the cancer has metastasized to her liver and lungs and there is nothing they can do for her. I am not sure if the gleevec helped or hurt. Kathy C. Thu, 17 Jul 2003 00:00:00 GMT Please I need your help, This is of a wife of a friend of mine with low income and no insurrance, The wife is having a liver cancer and Doctors asked for Gleevec 400mg, I have been asked to find the medicine, DOea any one can help how much cost? And if there is any good place to find it for low price. Thank you in advance. Naim Helper Mon, 23 May 2005 00:00:00 GMT Hi Haim M. Novartis, the makers of Gleevec, have a patient assistance program for people with low incomes. Your friend's doctor will have to send in some enrollment paperwork. Novartis will call back and ask some questions about financial status to see if she qualifies for assistance. Good luck, Mike Mister k Wed, 15 Jun 2005 00:00:00 GMT Hi Marshall, my husband also, started out with Gist in his stomach, had half of his stomach removed, spleen, part of his pancreas and colon. Was fine for a year, then the cancer showed up in his liver. He was put on 400mg of Gleevec and no side effects for a year. Now, he is feeling the same way he did before he was diagnosed with cancer. He is tired, no appetite, upset stomach and pressure. He goes to see the doctor this week and I am so scared at what they are going to tell us. I also, wanted to know where you buy Gleevec. I buy it with drugstore.com in Canada and pay $2,400. for 30 pills of 400mg. Do you know where I can get it cheaper, it is killing us financially. Thanks Marshall, I hope your news from the doctor is all good. God Bless us all The Poet The Poet Mon, 14 Nov 2005 00:00:00 GMT