Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Hi Susie, I'm sorry that you are experiencing so many side effects all at once. I think the weirdest thing about CML and Gleevec is the fact that every individual responds differently to the drug and it's side effects. I'm 42 and a stay-at-home Mom of two young daughters. My side effects come and go. I get sore achey legs and that stiff " flu like " feeling all over my body and chills. I have found that my symptoms are worst just before my monthly cycle, especially diarrhea issues. My coping strategy is to take an Advil (if it's really bad) and get in a hot bath and pamper myself with indulgent bath goodies. I also light some candles and try to refocus and center myself. Drink a cup of tea and don't beat yourself up over it. My attitude is.. " Tomorrow is another day, and it will be better!... and it usually is. I've talked to my Onc about my symptoms and he honestly doesn't suggest anything. I think they just don't have a clue until they are the patient. I don't want a prescription for another drug! I want to feel better! So, I'm taking matters in my own hands and trying to create balance and wellness while living with CML. I've put on a significant amount of weight since Gleevec and the diagnosis, and I'm really working hard on getting the weight off with healthy eating habits, and treadmill workouts. Some days, it feels like torture to get on the treadmill, with achey legs from edema issues, but I know that it's getting me one step closer to my ideal weight, and it does wonders for me emotionallly. The treadmill is my " happy pill " . I would look at your eating habits, and even keep track of what foods you eat. Maybe you've developed food sensitivities? I know I can't handle milk products like I used to. Anything greasy will do it to me too. Have you ever looked into Gallbladder issues? I know people who have had their gallbladders removed, that you will have severe vomiting and diarrhea and just feel really crummy? Maybe it's more that just CML and Gleevec? I think it's worth looking into. Good luck and keep us posted. Good vibes are being sent to you today! Lynn (Snickersunny) Dx'd 12/03 White count at dx- 305,000 less that 2% blasts PCRU 7/04 400 mg Gleevec > > Hi, my name is susie and i was diagnosed with cml november 2002. I > know we have to be thankful for Gleevec but please can I talk to > someone with servere vomiting, diarreah and the joint aches are > unbearable. Im on 600 of Gleevec (was on 800 until trial finished > october 2004) 10 sickness tabs a day and im on upto 10 pain killers > aday. Somedays I just dont verture out from my house due to bathroom > reasons and i end up in my bed with my electric blanket on three to > help me cope with the joint ache. Many times I walk and feel like a 60 > year old due to joint ache and im only 41 . I also visit the shower or > bath many times through the night just to leaviate pain.. please > someone talk to me....Please don't get me wrong I am thankful for > Gleevec but does someone know of other drugs that I can take as well > as just to give me a little bit of quality of life....talk to me.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Hi Susie, Sorry to hear about all the issues you've been dealing with. One thing that peeked my attention was your diarreah issue. Are you by chance taking magnesium? While Gleevec on its own can cause diarreah, lots of us take magnesium for the muscle cramps and it does seem to make a difference however, I finally figured out that it can cause a wicked amount of diarreah too. I finally decided to take Immodium to deal with it and it worked like a charm after the first dose! I've heard of others using Immodium with success too so you may want to try that. As for the vomiting, the only advice I have for that is to make sure you take your Gleevec with LOTS of food. You've probably heard it before but it really does make a huge difference for me. If I have a mediocre meal, then I'll be nausous all night. Hope you find relief soon, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 Susie, I'm so sorry to hear about how terrible your side effects are. Many others have given you great suggestions on how to cope with them. I would only say what others have said about combating nausea and vomiting and that is to take your Gleevec with plenty of food. My husband takes his in the middle of his meal so that he has food in his stomach when he takes it and adds food on top of it. This usually works well for him. And for him, the meal needs to have a good helping of protein. A meal of only carbohydrates will leave him with nausea. And split the dose. Take half in the morning or with lunch and the other half with dinner. You might also check out cmlsupport.com, which is a web site run by one of the other list members. There a great list of side effects with suggestions on how to deal with each one. Finally, it may be that you simply cannot tolerate Gleevec. Some people just can't. If that's the case, the good news is that there are two new drugs in Phase II trials, BMS (sorry, I keep forgetting the number of this drug, but I'm sure someone else on this site knows it) and AMN 107 which are supposed to be more effective than Gleevec and have fewer side effects. Talk to your doctor and see if either of these trials would be an option for you. Hope you get relief soon! Adrienne Susie <leechys@...> wrote: Hi, my name is susie and i was diagnosed with cml november 2002. I know we have to be thankful for Gleevec but please can I talk to someone with servere vomiting, diarreah and the joint aches are unbearable. Im on 600 of Gleevec (was on 800 until trial finished october 2004) 10 sickness tabs a day and im on upto 10 pain killers aday. Somedays I just dont verture out from my house due to bathroom reasons and i end up in my bed with my electric blanket on three to help me cope with the joint ache. Many times I walk and feel like a 60 year old due to joint ache and im only 41 . I also visit the shower or bath many times through the night just to leaviate pain.. please someone talk to me....Please don't get me wrong I am thankful for Gleevec but does someone know of other drugs that I can take as well as just to give me a little bit of quality of life....talk to me.... --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 Hi Susie, Sorry you're experiencing so many side effects. It really isn't fair, because some people get almost none! Your best bet is to address each side effect separately, and see what you can do about it. It takes a bit of thinking and experimenting though, because the treatment for one symptom can make others worse. For example, taking 400mg of magnesium (plus 1200mg or so of calcium) daily can help a lot with leg cramps, but magnesium can make diarrhea worse. On the other hand, most folks find that Imodium (2mg once or twice a day - or more if you need it) helps a lot with the diarrhea without making anything else worse. You can improve the nausea by spreading your Gleevec dose out during the day and being sure to take food immediately before and after ever time you take it. Ibuprofen, or even simple aspirin is reasonably helpful for the joint aches (though some folks need stronger pain medication). And make sure you keep getting exercise even if it's not comfortable at first: it makes most folks on IM feel better in a whole lot of other ways. One thing that's occurred to me is that for those with really severe joint and bone pain (as distinct from muscle cramps), a trip to a rheumatologist might be a good idea; they have special tests they can do to localize the source of the pain exactly, this is not an area of particular strength for heme/oncs. Best of luck to you, R > Date: Wed, 27 Apr 2005 15:17:04 -0000 > From: " Susie " <leechys@...> > Subject: Gleevec Side Effects > > > Hi, my name is susie and i was diagnosed with cml november 2002. I > know we have to be thankful for Gleevec but please can I talk to > someone with servere vomiting, diarreah and the joint aches are > unbearable. Im on 600 of Gleevec (was on 800 until trial finished > october 2004) 10 sickness tabs a day and im on upto 10 pain killers > aday. Somedays I just dont verture out from my house due to bathroom > reasons and i end up in my bed with my electric blanket on three to > help me cope with the joint ache. Many times I walk and feel like a 60 > year old due to joint ache and im only 41 . I also visit the shower or > bath many times through the night just to leaviate pain.. please > someone talk to me....Please don't get me wrong I am thankful for > Gleevec but does someone know of other drugs that I can take as well > as just to give me a little bit of quality of life....talk to me.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2005 Report Share Posted June 22, 2005 It seems to me that you ought to try the BMS trial - which is recruiting heavily at the present time. You will need to get your Dr. to state that you are not doing well on Gleevec. The anecdotal evidence says that the BMS drug's side effects are much less severe than Gleevec's and that it is just as effective in attacking BCR-ABL. More so, in fact, because it also addresses most of the DNA mutations. You can find out everything you need to know about the trials by visiting www.newcmldrug.com. > Hi lynn, im sorry to hear about your side effects. I too have bad > side effects, vomiting, diareah and constant aches in my joints. I > was on 800mg for two years with very servere side effects and then > they took me down to 600mg as i finished trials. My doctor use to be > a bit blazae about my side effects but just this last few months he > has now gained symperphy. Not sure just where my results sit only he > spoke to me the other day and said they are up and down since comming > off 800mg last october. He is gonna see what happends with my results > in august to whether he puts me back on 800mg. Im not happy with that > but what else can we do. I too am very greatfull for Gleevec, it is > the wonder drug of the 2000 and when you say you now say you can have > life but feel like crap I do understand. There is a new drug out he > says but it just dosnt seem i can go onto that till maybe next year. > I wish you well and I hope you find relief in your side effects from > Gleevec and if you find any...please pass it on... > thanks.. > > Susie xxx Quote Link to comment Share on other sites More sharing options...
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