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In a message dated 9/20/2004 1:04:32 AM Eastern Daylight Time,
[EMAIL PROTECTED] writes:
couldn't tolerate the Gleevec at all 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
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