Lisa,
If there is one thing I think most of us understand it is the pain caused by Gleevec. But I must tell you........gleevec is completely out of your system after four days. I went off of it for about two weeks and I called and talked to my pharmicist about it and they told me that, that after four days gleevec was completley out of my system.
Hugs,
Katy
--
xanga.com/katybug45
xanga.com/katybug45
-------------- Original message --------------
From: "lisa mcneil" <[EMAIL PROTECTED]>
>
> Terry
>
> Thank you so much for your words of advice. I live in Adelaide, Australia &
> I have just joined the group. The doctor I see is the best doctor in
> Adelaide & his pet interest is CML. I have thought of changing as he refuses
> to aknowledge my pain & help me seek help for it. I still have pain after
> being off Gleevec for 7 weeks. He says the Gleevec would not be in my system
> any more so it can't be caused by that. I was on 400mg a day. I am also
> reluctant to change doctors as he seems to be in charge of alot of the
> trials. He is not going to put me back on Gleevec but instead in the next
> couple of weeks is going to start me on Sprycel (dasatinib). I am a little
> w ary about taking such a new drug but I feel I have no other options.
> Gleevec hasn't put me in remission although my levels are all good. I also
> could not face going back to the severe pain I was in. I am still in a
> resonable amount of pain at the moment & to go back to the extreme pain is
> an unbearable thought. I also suffered from bouts of nausea after I took my
> Gleevec. The fatigue is still the same on & off the drugs. I hope my pain
> will go away over the next couple of months. I personally think it will take
> a while for the Gleevec to be fully out of my body. Thanks for the e-mail &
> hang in there. I will stay in touch & let you know how the Sprycel & pain
> goes.
>
>
>
>
> >From: "Terry Dailey" <[EMAIL PROTECTED]>
> >Reply-To: [email protected]
> >To: [email protected]
> >Subject: [CMLHope] Re: pai n associated with gleevec
> >Date: Fri, 18 Aug 2006 07:52:25 -0500
> >
> >Hi Lisa,
> >
> > I am sorry to hear your having such a rough time, but your not completely
> >alone. I was dxed in April 04, and have been on 400mg of Gleevec since.
> >During this time I have had major swelling around the eyes. (It was so bad
> >it looked like I had been in a boxing ring) I also suffer from fatigue,
> >nausea and muscle and bone pain, though not as bad as your experiencing it
> >seems. Thankfully the swelling around the eyes in now minimal, but the
> >other
> >side effects are still going strong. I was started out on codeine for my
> >pain, but all it did was make me sleepy and upset my stomach, so I was put
> >on 500/7.5 Loritabs, three times a day. It has helped tremendously with
> >both
> >my pain and fatigue, though I may have to ask to upgrade slightly to
> >Vicadin
> >ES. The reason for this is that they seem to help better with my fatigue.
> >I am not sure what sort of dosage they were giving you with the Gleevec,
> >but
> >if it was higher than 400mg you may want to try that dosage along with
> >trying Loritabs. The thing with Gleevec is it seems to effect those that
> >take it differently. There are some that take it and suffer little or no
> >side effects, while you have others like us that do have side effects. All
> >I
> >can say is the Gleevec put me in remission a month after I started taking
> >it
> >and has kept me in remission ever since(so far), and my doctors say as long
> >as it works I just have to deal with the side effects.
> >I am not sure of your tolerance for codeine on your stomach, but I would
> >get
> >off of that as soon as possible. It really messed with my stomach. I am
> >still battling the weight loss I have suffered because I normally can only
> >eat once a day due to my nausea and lack of appetite. I am 5'9 and weighed
> >155 to 160 before being dxed and at the last time I was weighed am at 137.
> >I
> >also am limited in my physical activity, and cannot handle long exposure to
> >heat or sunlight, so I know it sucks but just hang in there.
> >I have to say I was surprised they put you on such strong pain meds without
> >trying something else, and they took you off of Gleevec so fast. I mean
> >some
> >people cannot handle Gleevec so I am not trying to second guess your
> >doctor,
> >but maybe somethings I have mentioned might help you be able to take it
> >again and manage your pain.
> >I am not sure how long you have been with the group, but I have a "team " of
> >four doctors and recently had a very bad experience with one of them. He
> >was
> >trying to say I should not have any side effects and pretty much made it
> >seem it was all in my head. Since then I have given orders I do not want to
> >see that particular doctor ever again. The sad reality is many people do
> >not
> >understand exactly what a Chronic disease like CML is and that even though
> >we may not be hooked to IV's, and such we are not that bad off.
> >Your not alone Lisa, so don't think it is just in your head or anything. If
> >your doctor is acting like he does not believe you then I would find
> >another
> >doctor. If he is working with you and was giving you a larger dose of
> >Gleevec than maybe you can talk with him about trying a lower dosage and
> >different pain meds? Again I am not a doctor and I do not play one on < BR>> >TV..hehe, but Gleevec saved my life and was a miracle for me, so I hope it
> >can do the same for as many people with CML as possible. There are also
> >other drugs out there now for people that cannot handle the Gleevec so you
> >may want to look at those. The bottom line is Gleevec effects people
> >differently and so do the pain meds I am on as well. The important thing is
> >you need to know that your not alone and there are allot of cool people
> >here
> >that will try to help as best they can. Good luck to you and let me know if
> >any of my little rant helped, and how your doing.
> >
> >Take Care and Hang in There,
> >
> >Terry
> >
> >On 8/18/06, lisa <[EMAIL PROTECTED]>wrote:
> >
> > >
> > > I was diagnosed with CML 4 1/2 yrs ago. I was Interferon for 12mths &
> > > started getting pain off & on which ended up so bad I was approved for
> > > Gleevec. My pain improved for a while then it started to get worse &
> > > worse. I ended up on morpheine & I still couldn't control the pain. My
> > > doctor has taken me off of Gleevec to see if my pain is due to the
> > > drugs. My pain has improved but I still take 8 codeine a day. The pain
> > > is hard to describe. It feels like it starts in my rib bones & as it
> > > gets worse it spreads through my whole body & will spread out to my
> > > skin so that it is so sensitive it is painful. My pain is not in my
> > > muscles or joints. I am also very limited in my activities. I am unable
> > > to drive very far, vacuum, iron etc. Even being on the internet brings
> > > on exhaustion & pain. I am wondering if anyone else has similar side
> > &g t; effects.
> > >
> > >
> > > >
> > >
> >
> >
> >
>
>
>
--~--~---------~--~----~------------~-------~--~----~
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------
You received this message because you are subscribed to the Google Groups "CMLHope" group.
To post to this group, send email to [email protected]
To unsubscribe from this group, send email to [EMAIL PROTECTED]
For more options, visit this group at http://groups.google.com/group/CMLHope
-~----------~----~----~----~------~----~------~--~---
