First of all, glad to hear from you Paige and know how you are progressing. When I first came aboard to the CML family, Paige was there to comfort me and offer all the knowledge she knew. I was in such a panic, and just knowing she lived in TN as well and she too had CML...just somehow made it seem not so lonely, and terrifying.
Much like Paige, I have ping ponged too. I got to celebrate "almost" remission for about 2 months...last Friday, my husband spoke with my doctor(I was not home to get the call) by phone concerning my last PCR test and I went from 59 cells out of 100,000 back up to 4,771 cells out of 100,000. Well to be totally honest, I wasn't surprised. I was so relieved to know I was getting better, as stupid as it may sound to some of you, I slacked off on the IM. It felt so good to "feel good" again. Gleevec works differently on everyone I think. Some of you are still able to work and maintain the lifestyles you once did, while some, like myself can't do that anymore. Paige mentions feeling as though in the beginning, like she had the flu but it soon passed...well in my case, now after being on Gleevec for 19 months, I still feel as though I have a bad case of the flu..every day of my life. My doctor asked me to describe it and this is the only way I know to describe it. I pretty much suffer the majority of symptoms known for Gleevec. I have not gained any weight, or had any increase of appetite, in fact just the opposite...lost weight, from average weight for me 145lbs down to 118lbs now. I have to force myself to eat just so I can take my medicine, and if I don't eat quite enough, I'm nauseated or throwing the Gleevec back up. The muscle cramps and the bone pain have decreased in intensity but by no means went away. I still have headaches daily, severe dirrehea, almost total "brain fog", seriously my memory is leaving me more and more and I've become what my husband calls worse than "a bull in a china shop"...I get an A in cluminess, forgetfulness. The Gleevec also causes me to have severe acid reflux in spite of 2 Nexium a day and is worsened by lack of appetite...and not being able to eat properly. So I'm trying to live as normally as I can with a never ending case of flu, burning from my mouth, throat, espohagus and stomach, and as soon as food hits my stomach, I'm running to the bathroom with dirrehea. I cannot tolerate 800mg and now I'm almost at the point where I can't tolerate the 600mg. The fatigue is not as bad as it once was...there was a time when I could not even mop my kitchen floor...now I can and many other things, but the more I do...the more fatigued I am the next day..so I've had to learn to limit myself. Instead of cleaning my entire kitchen in one day, say a couple of hours,(like I once did) I now do a little day by day...it takes me 2 days with several breaks during the day. Anyway, my point I'm trying to make...my family is furious with me for not taking my meds properly...all the fuss about how could you play with your life like this...to stay alive, I'm sacrificing and don't have a very worthwhile life. Until one has been in your shoes, they can't possibly know what it feels like. Paige says she is not content but happy....I'm content if you can understand that...but I don't have many happy moments because of the way I feel and suffer. I cry from the misery and I also cry when I have a good day...and if I take the Gleevec as prescribed, I don't have many good days. I realize that we have some newcomers and I'm not trying to scare you but everyone's story is a little different. It's just like Paige said, "You've got to follow your gut...and the right decision for you will reveal itself." I once had a doctor who only believed in BMT, and basically told me I wasn't gonna make it if I didn't choose this option. Well, I followed my gut, and was against BMT from the start...and I'm still against it. If they tell me, you're going to die in 6 weeks, or 6 months if you don't have a transplant...well if they happen to be right, I suppose I will be joining my maker. I've been sick 19 months since diagnosis plus about a year before I found out...and I'm not going to put my body through it cuz I don't feel physically I could live through it...I'm run down, underweight...and I've been abusive to my body over the years...smoking 2 to 3 packs of cigerettes a day, living off caffeine and junk food...working 2, sometimes 3 jobs at once with little or no sleep, been stressed out by 2 husband's, 2 teenagers, a mother with alzehemier's just to name a few. The CML specialist I see now was quite frank with me about BMT, he said...it's like rolling dice...you might get lucky and then you might not. And we all know that to be true, we've had those who did so wonderfully...and those we lost. While we're told, we have the "good kind" of leukemia, if ya got to get cancer, man this is the one to get...well it's not the good kind to those of us who suffer just to stay alive. I'd like to also mention, that the doc told my hubby, there is a new drug to be approved by 2 to 4 months from now and that I qualify for it and he will get me started on that as soon as humanly possible. He didn't mention the name of the drug and my hubby didn't bother to ask...so does anyone have any ideas what it would be. Paige, since you're in the Nashville area, I thought maybe you may have heard. I left a message for the doc to call me...but it was late this afternoon. Just wanted to update you all with my circumstances, and say hello to Paige...and share some of my experiences with the newcomers. To be continued....... Love, Peace, Hope & Prayers, Pat __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com ------------------------ Yahoo! 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