Hob: I wish I could blame the oncologist for my stopping the gleevac a year ago, but I cannot. It was my idea. I did not ask him, nor did I discuss it with him. It was making me really fat, and my stomach seemed to be developing some problems from it, so I stopped. After about a year, I confessed to him that I had not been taking it, and he freaked out, and then told me that if I go back on gleevac, it may not work. I know he never told me that before, otherwise, I doubt I would have quit. I know that sounds stupid, and I now realize I was stupid to stop without consulting him first, but in my defense, he kept downplaying the seriousness of the disease with me. He said that only old people get it, and that it wouldn't kill me. Now, he does an about face!
I live in the Pittsburgh, PA area. There is a cancer center here...at UPMC. You know Rob, when you have so many things going wrong with your health, you sometimes become overwhelmed, which is what happened to me. It was all just too much, at one time, and no cure for anything. I survived breast cancer, eleven years ago, and was told that I was cured. Now, another doctor tells me that I may have developed the CML, as a result of the high dose radiation for the breast cancer that I had, eleven years ago. The worst part is that my oncologist then is the same one I have now, and he consulted with his partner, at the time of the breast cancer. He wanted me to undergo radiation, lumpectomy, and five years of tamoxifin, however, his partner said that he felt a lumpectomy and the tamoxifin would be more than enough considering that I had a very slow growing cancer called medullary, and that they caught it quickly. How many times I have trusted doctors, and have been hurt, but there is no alternative. I could tell you stories about the fibromyalgia, Sjogren's, connective tissue, chronic fatigue, etc....and my doctor, that would completely surprise you, and, yes, I wish I had sued him. But, at the time, I was so ill, I couldn't even get out of bed. I have to believe that this all happened the way that it did, for a reason, one I don't know, yet, but I pray that I will soon. Thanks, Rob. Kat :) --- In [email protected], Rob <[EMAIL PROTECTED]> wrote: > > If your physician took you off Gleevec I would strongly suggest that you > need to get to a doctor with experience in treating CML as soon as possible. > Even when the Philly marker is gone patients still have to keep taking > Gleevec. It is somewhat similar to a diabetes patient taking insulin, they > have to keep taking the insulin to keep the diabetes under control. > > Where are you located? There are major cancer centers in most areas of the > country that have CML specialists. > > Rob > > On 12/20/05, katsietoo_99 <[EMAIL PROTECTED]> wrote: > > > > Rob: I stopped the gleevac, and was on nothing. The Philly marker > > was gone, and the oncologist never told me about the risk of stopping > > gleevac, until a year later (after I stopped taking it). I have been > > off of the gleevac for a total of one year. I restarted it a little > > over two months ago, my numbers returned to "really good" as the nurse > > said, and now I am having side-effects that I never had the first time > > that I was on the drug. Thanks for asking, I hope you can offer some > > insight. Katsie. > > > > --- In [email protected], "katsietoo_99" <[EMAIL PROTECTED]> wrote: > > > > > > I am sick again. I started the gleevac seven weeks ago, and my count > > > went from 7.5, to the low 3's,...I know I was still under the 10 > > > number, where the oncologist considers you safe, but he tested me, and > > > found the Philadelphia marker has returned, from a year ago. A year > > > ago, I stopped using gleevac, and then after the oncologist told me > > > that it may not work, if I try to use it again, I was frightened, and > > > restarted the medication. So far, it appears to be working, since the > > > numbers have dropped, as indicated above. > > > > > > About a month ago, I thought I had the flu, and went to the hospital. > > > I have other conditions, fibromyalgia, Sjogren's, chronic asthma, > > > connective tissue disorder, and chornic fatigue. I was feeling > > > terrible. Really tired, and my inhaler, used for asthma, didn't seem > > > to relieve my trouble breating. My nose was stuffed up, even after > > > taking my pill for allergies. > > > > > > The hosptial told me I was still under 10, seven weeks ago, and that I > > > probably had developed a bronchial infection, however, the hospital > > > could not truly tell whether or not that was the problem. I took an > > > antibiotic, for five days, which works for two weeks, and I began to > > > feel better. The strange part, is that I have had bronchial > > > infections all of my life, and this did not feel like a bronchial > > > infection. > > > > > > Now, the same symptoms are back. I forgot to mention that my back > > > (middle), hurts really bad, and that rib on the right that I was told > > > by the hospital doctors that I fractured, is hurting again. I haven't > > > lifed, or done anything to cause this pain to return. Plus, I am > > > afraid of the flu, and since they weren't sure it was a bronchial > > > infection the first trip to the hospital, I am wondering, could I be > > > suffering from a side-effect of the gleevac? > > > > > > Unfortunately, I have not been able to get a flu shot. I have been > > > trying, but everytime a clinic is set, it gets canceled, and my > > > doctor's offices do not have it. They keep saying it's production, > > > delivery, etc. I just don't believe them anymore. I just don't think > > > there is any left. > > > > > > Also, I cannot eat meat,..I cannot stand the smell, or sight of it. > > > This has been going on for about a week. I got this sick feeling > > > today. When I saw my oncologist, last week, he gave me a script for > > > nausea, but I do not feel nauseated, until I smell food. > > > > > > I am so tired of calling the doctor, though I know that I must,..but I > > > just wondered if anybody else was suffering the same symptoms? > > > > > > I took an expectorant early today to try to fend off another bronchial > > > problem, but it doesn't seem to be doing anything, yet. > > > > > > I am just scared. It seems like everytime I visit a doctor's office, > > > I get bad news, and I would like to be prepared (a little more), > > > before I have to face the oncologist again, this week. Thanks for > > > reading this, and if you can help, please feel free. Katsie. > > > > > > > > > > > > > > > > > New! Sign up for local CML support group meetings in your local community > > at http://cml.meetup.com > > > > Apply for Commercial Real Estate loans online and submit your deal to > > dozens of hungry lenders in just minutes. Loan programs for all types of > > business and commercial real estate. 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