[CMLHope] Re: Nausea & Diarreah

Wed, 04 Oct 2006 07:50:51 -0700

Hi David,
 
I am sorry you were dxed, I wish you all the best. Your situation though sounds exactly like mine, down to nearly every side effect. For a while I had thought it was just me, I mean I know of the listed side effects, and that some people cannot even take Gleevec, but in the back of my mind I always thought...."Jeeze man, you work in an office, get back to work!"
The sad fact is like you, I can't. It is mainly due to the memory loss, focusing, etc.(no it is not from my old partying days..hehehehe)
I am glad like me, you had private disability insurance, because without that I know I would be screwed. I am also trying to get SSD for the same reason you are. It is good to know that with the small amount SSD will pay me(if they ever award it to me), that my private carrier will make up the difference so I can at least be able to afford to live. Granted, I am not going to live the "high" life, but at least I won't be homeless..hehehe. I am just glad I bought the stuff I did before I was dxed...hehehe.
As far as Sprycel goes, well I personally am going to keep taking my Gleevec. Yeah I have allot of side effects, but they are finally now managed by other medication. I am not sure how much pain side effects you have, but I was started off with Tylenol 3's. All they did was make my stomach worse, and make me sleep. After many months on those, I finally talked to my doctor, and they have put me on 4 Loritabs a day, 500mg's/APAP 7.5. I am not saying this will work for you, but they have done wonders for me. They even help with my fatigue. The thing is every one's body chemistry is different so keep that in mind. I know some that my meds would knock out..hehe. Back on the subject of Sprycel vs Gleevec. From my understanding Sprycel is mainly for those that cannot tolerate Gleevec, or have became resistant to it. My opinion is the same as yours, and if I were you I would stay on the Gleevec. I am going to be seeing a new doc since I moved to Ohio, and my appointment with them is on Oct 20th . I just got tired of having to travel two hours(one way) back to Louisville KY to see my present doc, even though I like them(well all except one). The doc's I am presently seeing have told me about the new drugs out there, but they have simply presented them to me if the Gleevec stops working, otherwise they recommend I stay on Gleevec, which I plan on doing. They also have steered me away from a BMT because frankly, in their words, the risk factors are too high, and the success rate is too low. With the life extension Gleevec has given me, in their opinion, there will be something in the future that will "cure" those of us with CML.
If this new doc tries to push a BMT, or is like the very first doc I saw(I fired him after three visits) I may have to suck it up and drive to Louisville or look for another doc here in Ohio.(around the Cincinnati area)
I think the mental side effects and fatigue are the worst things for me to handle. Like I have mentioned before in other post to the group. I was a credit card fraud investigator, and I really miss working. I forget allot of things, and found myself having trouble focusing, and having to re-read things which I never had problems with before. I have rambled long enough, but feel free to contact me anytime Dave. The same goes with anyone in the group too;)
 
Hang in there,
 
Terry

 
On 10/3/06, Dov <[EMAIL PROTECTED]> wrote:

Hi, Terry.  Like you, I have a lot of side effects that have basically
sidelined me and put me on a disability leave from my job ( e.g., memory
loss, difficulty focusing, concentrating and comprehending, extreme
fatigue, and a bunch of less important but annoying physical side
effects).  I've also been getting benefits from an employer-provided
policy and am in the process of applying for SSD benefits (because the
private insurer understandably wants to be able to lower payments to
me).  My question for you is whether your doc has proposed trying
Sprycel to see if there are fewer bad side effects for you.  My doctor
has brought it up, but has not really pushed it too hard.  I'm nervous
to try anything new because I'm in complete molecular remission on 400
mg. Gleevec (been on it since dx in May 2005) and I'm a bit of the mind
that the devil you know is better than the devil you don't know.
Curious to hear your thoughts.  Thanks.  Warm regards.  David (aka Dov)




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