I don't have bone pain as such but my leg bones are sensitive. My daughter occasionally rubs lotion for dry skin into my leg and the shin bones hurt if she presses too hard. I also have neuropathy in my feet. They are so sensitive that a light blanket hurts my toes.
[EMAIL PROTECTED] wrote: > In a message dated 9/20/2004 1:04:32 AM Eastern Daylight Time, > [EMAIL PROTECTED] writes: > > couldn't tolerate the Gleevec at all > because the side effects were so severe.....bone pain > was one of them. I hope I haven't offended anyone by > sharing my side effects, my story with everyone but I > really didn't appreciate the comment. Hope everyone > has a good weekend. Love, Peace & Hope, Pat > > I am SOOOO glad others are posting about this. Thank you. Thank you so > much. I have printed out all of the related posts and am bringing them > to my doctor on Friday. I have been fighting for 3 years to convince > all of my doctors that bone pain is a terrible side effect, and that > there are actually other CMLers out there suffering along with me. > They keep saying most of the "pain" is in my head, and want me to see > counselors, psychiatrists, etc. I was so upset, as you can imagine, > to be treated like a loony tunes all of this time. Now I have some > hard evidence to present. Please, anyone who is experiencing severe, > debilitating bone pain directly caused by Gleevec, email me > privately. I would like to start taking down all the facts, the > treatments you are receiving, the doses, etc. We have got to get a > handle on this, so that this side effect is recognized. In Novartis' > initial release on side effects, it was downplayed that only 3% of us > had this side effect, therefore overlooked by many CML doctors. When > I presented my case to my new oncologist, she said this is NOT a side > effect of Gleevec. I have a real problem with that, for if my own > doctor doesn't believe me, then how do I get treated? > I have finally convinced someone in the Pain Clinic that my pain is > real, and can range from a scale of 3 - 10 depending on the day, time > of month, etc. Especially just before I get my period, it is > incredibly intense, and I even run a slight fever, with raised lumps > on the bone that ache to the touch. I can barely walk some days. My > fingers hurt and some days I cannot type. I describe the pain as > feeling like a thousand bee stings, or that someone took a hammer to > my bones and slammed every one of them, some days a dull aching all > over, some days it is localized to one area. > > I have been treated with doses of every pain med there is, ending up > with Oxycontin. But now the doses have escalated, because my body is > metabolizing the drugs and I am needing more. Of course, this > presents a HUGE problem and I have been accused of "abusing" my pain > meds because I have had to take an extra one during the night, without > my doctor's approval. The HMO is a real problem, because they are so > super cautious about this drug's controversiality. I have gone to > the Oxycontin website and read posts from chronic pain patients who > vouch for the efficacy of Oxycontin, and also state that over time > they too have had escalated dosing problems. They state also that it > is not fair the way we are treated. > I believe that the more patients on Gleevec with this particular side > effect that step forward and talk about it, the better. I wish > someone, either a CML specialist or Novartis, would look into the > reason we are suffering from this side effect. No one, to date, has > said anything, explained it, or given a reason that we can > understand. If this was explored, perhaps there could be a universal > treatment shared by all doctors, thus taking the anxiety away from the > patients who fight to get treated for it. > > Please, any of you suffering from bone pain, please email me. I am > sure you are just as anxious as I am to find the cause, and to find > relief, so that we can stay on Gleevec and not relapse. BMT is not on > my "to do" list. Thanks so much. - Lynne Andrews > > > > 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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