Hi Pat. I'm really new with this group so don't know if my writing will work for you or not. I have been looking for someone on the Sprycel. I've been on Gleevec for years (since it came on the market), and it has done well, but not put me into remission. I'm close, but not there yet. I'm lucky to have a wonderful Oncologist and have had him for many many years. Before my Leukemia, it was breast cancer. That has gone fine. It has been about 12 years since I had my right breast removed. When my doctor took me off the Gleevec I was on 800 mg a day. The Sprycel has had some side effects, but then we're not positive it's that causing it. I also have lots of other health issues and so it's hard to know which medication is causing problems. Right now I'm off of the Sprycel (taking a vacation), and all is well with me so far. I have heart problems, and severe arthritis, among other things. I now have developed a muscle problem, but my doctors think it's from the Arthritis. They pulled me off of a few medications and ended up putting me on Prednizone (sp), and some of the pain has gone, but not all. I will see my Oncologist in a couple of weeks, and we'll go from there. It's hard when you see many doctors. I have a Cardiologist, my primary doctor, (who is great), and also a doctor for pain management. They all try to work together and do an outstanding job.
On Gleevec, I suffered from diarrhea from the onset of Gleevec with some of the same problems you're having. I need to take meds to stop that, and have managed to control it somewhat. It is terrible as you never really know you're safe when you want to go out. I just don't eat much and that helps. I never got sick to my stomach from the meds, but then I don't smoke. I have in the past, but many many years ago I stopped, and thank God for that. My husband had a heart problem at the time and so I figured it was the least I could do as he smoked also. In the end, he kept smoking ending up with a quadruple by-pass, but I never smoked again. I don't know that I've helped you at all, but hope that it helps to know that there are others that are going through the same things, or close. My Oncologist is the best in the world. He takes time with me and we've become friends. He says I make him work for his $, and I tell him that's what he's suppose to do. Good luck with the things going on in your life. I know it's difficult at times. There are times I have to kick my self to get out of a depression, but manage to do it, even though the Arthritis keeps me from raising my leg that much. Take care and write if you'd like. I will keep you in my prayers. As I've said, I'm so new at this and never have gotten into the weekly chats. Perhaps I should, but don't always know if it's right for me. Millie ----- Original Message ----- From: <[EMAIL PROTECTED]> To: "CMLHope" <[email protected]> Sent: Saturday, September 29, 2007 4:50 AM Subject: [CMLHope] Hello to All > > Just wanted to check in with everyone. I am saddened that there is > such little communication amongst the group these past months, but I > guess I shouldn't be one to complain because I have not participated > near enough myself. What is going on? I know there was some conflict > sometime back and someone started another group. Has everyone deserted > this one and went to it or what? Something happened to our computer > and I've lost some things but my hubby has been working relentlessly > and has recovered some things. > Anyway, I still have not reached my zero mark.I am basically at a > standstill. I am having other health problems. I think I've told > everyone already I am now battling COPD. My appetite decreased so much > when I started taking Gleevec and now it is non-existent. I have to > force down what little I do eat. I basically live off of cereal and > soup and as soon as I take 2 or 3 bites and it hits my stomach, I > can't even make it to the bathroom. I have dirrhea constantly. If I > take my lotomil, then I'm constipated. I was having so much trouble > with my stomach, my primary doctor ordered a cat scan which found > nothing. I am a smoker and I am constantly quitting and restarting. > I've been on and off of the chantix(the quit smoking pill) and the > nausea from it was just horrific. None of my doctors can tell me if > maybe I shouldn't be taking it with the Gleevec. Not being able to > quit and stay quit is causing me severe depression. I know how > extremely important it is for me to quit. I'm also going through early > menopause which I am told is probably caused by the leukemia and this > too has been a terrible experience. I am under so much > stress...fininacial problems, a sick husband and a grown son who is > bipolar just to name a few. I broke down at my last visit with my cml > specialist and he wants me to try the sprycel, wrote me a script which > I haven't filled yet as my primary doctor was wanting to see what > issues I had with my stomach and I wanted to see what come of that > before I changed over. I really wanted to tough it out with the > Gleevec in spite of all it does to me so I would have the sprycel to > turn to should the Gleevec stop working. I'm just a basket case. I'm > now sleep deprived. Just cannot get in that 3rd stage of sleep...I > don't know if this is related to the COPD or what? My primary doctor > who 3 years ago was so wonderful has so many patients now, he might > spend 5 minutes with me, walks out while I am still talking, doesn't > get my scripts right...he's just in such a hurry all the time. I just > feel like giving up sometimes. I would love to hear from all of you > and know how you are. I really could use some comforting > encouragement, support right now....or just to hear how well your > situation is going would give me inspiration. I know I can expect some > criticism about the smoking...it won't hurt my feelings...I've heard > it all already. I've never asked this question before but are there > any smokers among the group, if so would you please email me > privately. I know if you are a smoker, you may fear ridicule, but it > will be kept private between the two of us...and I'm not fearful of > ridicule. I know only too well how I am killing myself. I've already > been told COPD will probably be my death sentence rather than CML. > I've never been a drug user, smoked a little weed back in the day, not > a drinker but I have a horrendous addiction to cigerettes. I'm > shameful but I'm honest. > Hope to hear from some of you soon. If you think of me,please pray for > me. I'm starting the patch tomorrow. It is not the first time, but I > pray this will be the last time I have to wear them. > Love, Peace, Hope & Prayers, Pat Reynolds > > > > > --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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