No you are not crazy. I was diagnosed in February 2002 and was lucky in the sense I went right on Gleevec. I still suffer from most of the side effects you mentioned. I have the weight gain, nausea, muscle cramps, fatigue, and diarrhea (that is pretty much always there). I am warm at times and other times I just cannot get warm enough. However, for the past six months it seems like they are less frequent but more violent. I am currently dealing with nausea to where I really have to fight keeping the stomach down. Before that it was muscle cramps (Both feet, a calf and a thigh all at once about 1 in the morning). Boy was that a fun night, good thing the wife and my kids were there...only have two hands.
I know what you mean about people thinking you are taking advantage of the situation. I too do not work on Wednesday,although I still work a forty five hour week. I think it is because people see us and since we do not look sick, they think that we are getting away with something. However,if they ever talk to me about it I explain everything and then they kind of go away embarrassed because they assumed something that was not true. My problem lately is making sure I get the rest i need but not allowing the disease to control what I do,if you know what I mean. Sometimes I feel there is no sympathy from the family but then I realize what they are doing is only making sure I do not give up! I too will never stop taking Gleevec unless forced to. I am alive because of it and in remission for 4 plus years now. So,the only thing I can say is tell you what I do for the side effects: Nausea - Make sure I always have something in my stomach. Not a whole bunch but just something - eating 5 small meals a day - not really - nibbling all day more like it. Fatigue - Have not made much head way on this area. Get as much rest as I can and try to eat/drink things that give me energy. Water - Watch the salts and generally watch what I am eating. Diarrhea - Actually found out that I am now (since diagnosed) lactose intolerant. So I eat lactose free cheese and drink lactose free milk. I also watch what else I eat that can be attributed to diarrhea - lettuce, coffee and such Muscle Cramps - I eat a banana a day (potassium) and if I feel the cramping starting I will eat tums (calcium),drink more water and if needed, tonic water for the quinine. This helps me. Night sweats - don't really have them but if I am cold,I but on more clothes, or dress lighter if I am hot. Weight gain - I have it under control but have a hard time getting rid of it. I attribute to the nausea. I feel real sick for about 45 minutes to an Hour and then I am starving so I might eat more than I should. Hope this helps. John On Apr 15, 11:54 pm, bikercub <[email protected]> wrote: > I was diagnosed with CML in May of 1992. I've been on Gleevec going > on my 7th year. I was on Interferon for 10 years before that. I > still have some effects of the Interferon, but I think most of my side > effects are from the Gleevec and was wondering how many others out > there have these. > > I know there are newer drugs available, but Gleevec seems to be > working for me and I don't want to mess with that! > > I've always ran on the "warm" side, but really feel warm all the time > now. I still have night sweats (which was one of the things that took > me to the doctor 17 years ago!). > > Sometimes I think that my co-workers feel that I am taking advantage > of having a day off in the middle of the week to "rest". I still work > full time and have pretty much since this all started. I also "look > healthy" so I think that may throw them off! > > I've read a lot of posts and read about various side effects, but most > of those posts were a couple years back....unless I'm looking in the > wrong place???? Is it because most people are starting on the newer > drugs for CML now? I'm actually wanting to know how people who have > been on Gleevec for a few years are feeling. > > So here is my list of problems: > Fatigue, especially if I do too much > Day and night sweats > Muscle cramps, especially at night in the calves and arch of foot > Frequent Diarrhea > Some edema > Nausea on rare occassions > > So, am I crazy? Or are you guys out there dealing with these too? If > so, how often? > > Thanks --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
