Gleevec

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?

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, 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,
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

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,
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

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

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.

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.

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