Hello to All, I hope all is well. Thanks so much for all the replies and words of encouragement, support, prayers. I am so thankful that I have this wonderful group of people to turn to....I regret that I haven't been as much support to others as you have been to me. I have made friends with some people who I've kept in contact with over the years, some who sometime ago left this group and went to another group for reasons I couldn't understand but anyway....when I need to hear advice, or have questions I depend on everyone in this group. You have never failed me. And I thank you all for this. I have an appointment March 4th with my doc and he is going to start me on the sprycel, that is if my insurance will cover it. My numbers are up....22,000 copies out of 100,000....hasn't been this high ever since I was diagnosed and it was 65,000 out of 100,000. There is a reason for this....truth is since before Xmas I have not been taking the Gleevec every day, and when I did I was only taking 400mgs, rather than the 600mgs but it has been my choice to not do so.....it's just I was desperate for just a little bit of relief. I went to the doc the 4th of this month and for 26 days now, I have been totally Gleevec free so I'm sure my numbers are even higher now...but I take total responsibility for what I have done and don't regret it....I'm just now starting to feel some relief....I don't know how to act to not be running to the bathroom, the acid reflux is starting to let up and I feel a bit more energized just all of a sudden, out of the blue! Whew! However, I am drenched with night sweats, headaches every day all day, I mean I take motrin and it goes away for a little while and comes back but go to bed with my head hurting and get up with it hurting and I have had some pain in my spleen area but nothing severe yet but it has been worth it to me to get just a little relief....not having the severe diarrhea and the constant reflux has been such a blessing. To be totally honest, I had gotten so depressed and so worn down that I had decided after the first of the year, I was not going to take another gleevec, not go back to the doctor and just let cml take me out...well, I'd think that and then I'd think well, I hate to do this to my family and I'd take some gleevec 2 or 3 days in a row....and then I'd not take it for 2 or 3 more days. I know it probably sounds crazy but you'd have to experience what the gleevec does to me to understand. I see now that I am not the only one who has experienced a lot of what I've been suffering thru thanks to so many emails and replies on here. I'm trying to be honest about my situation in hopes that maybe someone else might be or end up being in my situation, that it might help them in some way. Gleevec has been such a miracle for so many people...even for me, despite what it has done to me, it has kept me alive, that I did not succumb to cml but it's just something about it does not agree with my body, I guess. I'm excited to be getting off the Gleevec but at the same time, I am terrified of trying this new drug...I guess because of what I suffered with Gleevec but hopefully it will change my life for the better. I simply cannot live like this much more or at least I feel like I can't.....and I sure don't want to if I don't have to. Please wish me luck and keep me in your prayers....I will be posting to let you know how things go. In answer to Susieq question....I had been dropped down to 400mg before but since I never reached the big Zero, my doc upped back to 600mgs and still never reached it. I don't know why and he can't tell me so.....I often wondered was it because of the diarrhea that it wasn't staying in my body long enough....don't know. I stay with my doctor because he has 30 something years experience, he specializes only in CML and I trust him but I don't think he understands the severity of my symptoms, and it's like this....whether people want to believe it or not, doctors, some...hopefully not all, tend to treat patients differently. I am dirt poor, bottom line....I have Medicare. I've seen how doctors tend to be more friendlier, more compassionate to people with money. I've seen how people with money or say really good insurance are treated differently than poor people who are on hand out, medicaid insurance. You do not get the same treatment. I've noticed this all my life and it's the truth. My doc is short and sweet to the point of whatever...been seeing him for 5 years. When I get up to leave his office, he says see ya next time and he goes one way and I go the other. But some of his patients, who are dressed to impress, with the bling of diamonds, high fashion clothes. etc he walks with them to the front desk, chattering away, laughing, talking, maybe pats them on their back and tells the girl at the desk I want to see so n so at such n such time. Well, I've got a paper in my hand just like they do that tells the receptionist when he wants to see me again and he doesn't walk me down the hall chattering away. I see the difference but I'm just thankful I got him. My doc has offered me the sprycel at almost every visit for maybe the last 2 years or year and half and I always say, well you are forgetting about the copd, I'm not ready to chance it. I had 2 friends who ended up on our state funded insurance, they got sick, their insurance would not cover the needed tests, such as a catscan or MRI and the doctor could care so less that they didn't want to get on the phone and argue with the insurance company to fight to get it approved. They both died on Mother's Day 08, one from lung cancer, the other from uterus cancer that had spread to other organs. This same doctor who treated them was my doctor when I found out I had cml. I saw her once a year for pap smear and check up, paid cash for my visits. In the latter part of 2004, I went to her several times complaining that I was extremely tired, having headaches, having night sweats....that I just knew something wasn't right. Since I was working and care giver for my mother at the time who had alzhemeir's, she brushed me off saying it was stress....well, maybe the night sweats are early menopause... it wasn't just stress...it was cml. Had I had good insurance, she would have run every test known to man. This is the kind of profiling (I'm referring it to profiling) that goes on in the medical field just like it does in other areas such as racial profiling or whatever they call it now....you drive a certain kind of car, dress a certain way, you're a drug dealer. I don't know how in the world I got into this and hope I haven't started a controversy, but I'm speaking from experience from myself, and others I've witnessed but don't know how I got off on this subject but anyway....let me stop here. I wish everyone continued success if you are in remission, if you haven't reached it, I pray that you do. Believe it or not, if we just had to get cancer, we got the "good" kind as my doctor says. Love,Peace,Hope & Prayers to All, Pat
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