8 replies to this topic

[acl]

I have bone pain. I have not taken anything for the pain, if I did it would be Extra strength Tylenol.  I take 300mg. Imatinib daily, at 7:25 p.m. I would like to take 100 mg. of Imatinib at 11:00 A.M. and 200 mg. at 11:00 p.m. to see if the pain will go away.  Is it okay? I don't like to bother the haematologist, my next appointment with him will be in February. I am not PCR Undetectable, but I am almost there. Thank you.

Adela

[Billie Murawski]

Hi Adela,

 I don't know anything about splitting doses,but this cold weather is giving me more aches and pains then I ever had before, and it's not because I'm getting older it's the cml and Sprycel.  That's my story and I'm sticking to it!          Billie

[Trey]

Since Gleevec remains in the body for quite a while that would seem to be OK for a short term.  But overall I would not normally split 300mg dosage.  An alternative is just take the pain meds whenever you want.  That should not be an issue.  I personally would prefer naproxen (Alleve) since Tylenol is hard on the liver.  But short duration Tylenol should be OK.

[acl]

Hi Trey and Billie, Thank you for the response, it was appreciated. My bone pain is on my entire LEFT leg, I massage the bone with my hand, and slept on my Left side, and I slept very well last night. It is good to know that short term I could split the 300 mg. dosage, but I am going to continue with my one dosage for now, until the pain gets really bad again. I have not taken any pain killers, I don't like pain killers or sedatives, what I love is my Synthroid and my Gleevec. You and Gleevec are  my life line, and I thank God for you! Thank you.

 

Adela

[CMcLain]

Hi! I'm a newbie to the forum, but not to CML. So glad a friend directed me to this forum! There is a wealth of info here!
I was diagnosed November 2010 and immediately started Gleevec 400mg. My blood responded quickly to the Gleevec and my blood levels normalized. The last three FISH tests have come back negative, but I have still not reached PCR undetectable. I just had my 4th bone marrow biopsy last week. My doctor requested this because he said he needed a better idea of where I stand with my CML. And because my PCR number has increased slightly over the past two years. Doctor said if its trending up then it might be signaling a mutation. From looking at my molecular genetics report, it appears that my PCR is 0.8341. I don't know if I'm reading this right. I don't know the exact number for this last test other than the nurse told me it has decreased by half. So, it might be 0.4. I know my doctor wants me to be at 0.1 or lower by now, so I'm concerned of what he might recommend. I really don't want to change my course of treatment because I've done well on the Gleevec, meaning literally no side effects and I feel incredibly good. I wouldn't even know I have CML except that I take a pill every night after dinner. I would very much appreciate Trey's thoughts on my situation. I see that he has been taking Gleevec for a while now. Also, anyone else who wants to share their thoughts or advice is welcome!
Thank you!
CMcLain

[Trey]

Since your PCR is well below CCyR, there is no real problem to solve.  However, you are a slower than average responder.  After 4 years on Gleevec without MMR it would be a reasonable approach to either increase dosage or switch drugs.  It does not act like a mutation issue at all.  Tell your Onc to stop with the BMBs.  Below CCyR they are fairly useless.  You respond to the drug, just a bit slower than average.  So if you like Gleevec maybe you could try increased dosage.

[CMcLain]

Trey, would you advise me to seek out a second opinion from a doctor? I just moved from Dallas to the Austin area for my husband's job. Thank you for the words of wisdom you've already shared!
Also, how do you think I'd do with an increased dosage of Gleevec? That scares me a bit!
CMcLain

[Trey]

Generally, unless someone has a specific difficult issue a second opinion is not very useful.  It is all about finding a drug and dosage which work best for you.  If your Onc will not help with that, then getting a new Onc can be a good idea.  You never know how increased dosage will work or affect you unless you try.  If the current side effects are very tolerable, then trying an increased dosage is reasonable.  Also, these drugs are not lifetime friends, they should be treated as a tool that can be changed out for a better tool if needed, so I would be flexible about changing drugs.  Your situation is not one that demands action, it is just that you could probably do better than you are doing by making some change.

[CMcLain]

Thank you Trey for your honest and very helpful answers to my questions!
CMcLain