Hello everyone, I am fairly new to the google group. I am a 62 year old grandmother who was diagnosed with CML in Nov of 05. When I was first diagnosed my platlets were over 1 million. I was put on Gleevec immediately with good results the first 3 months when my liver function was affected. I jaundiced and had to be pulled off everything until the liver could recover. That took about 8 weeks to come back. I was then sent to the Medical College of Milwaukee. Sprycel was not FDA approved yet but was due to be on the market it about 4 months. We bridge that gap with hydrea. When Sprycel was approved (thank God) I was put on 70mg twice a day. This worked so well that It just about took out my Bone Marrow. Again I had to be pulled off until recovery of the marrow could be again reached. Since then I have been on only 20mg twice a day with wonderful results. I do have to have a bone marrow test on Tues. They are looking so see if I have achieved a log 3 reduction. I wasn't quite there at my last marrow test. I do have some side effects-Joint pain, dizziness, weight gain and extreme anxiety all of which I can live with but I can't live without the Sprycel. The anxiety is due to family problems. A sick husband, a daughter with diabetes and a son without a job. That is enough to cause a little stress. But I continue to trust in my savior Jesus Chirst and He sustains us all daily. Carolyn ----- Original Message ----- From: "C.M. Houtz" <[EMAIL PROTECTED]> To: <[email protected]> Sent: Saturday, September 29, 2007 7:17 AM Subject: [CMLHope] Re: Hello to All
> > 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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