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 wary 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: pain 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 >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 > > 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 -~----------~----~----~----~------~----~------~--~---
