Hi Carolyn I'm happy that you wrote. I am a 68 year old grandmother, so we do have a lot in common. I appreciate you sharing things with me. CML isn't fun, but then we have to keep working at it and we'll get it right at some point. I am lucky so far that my liver hasn't been affected....not yet. I'm also glad to have a break from the drugs right now...At least those drugs. I take so many with my heart, etc. and I also have thyroid problems, and many other things going on, but feel lucky to be alive and try to live one day at a time. I always say if it weren't for my Arthritis, I'd be fine. I am on a walker now and soon going to a Wheel chair....at least around the house. You take care of yourself and write when you can and let me know how you're doing. Millie ----- Original Message ----- From: "John Kuptz" <[EMAIL PROTECTED]> To: <[email protected]> Sent: Saturday, September 29, 2007 10:18 AM Subject: [CMLHope] Re: Hello to All
> > 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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