Hi all,
It has certainly been a long time since I last posted on this forum - but I have been a silent observer, lurking in the shadows of the internet highway.
For the past 5 years I have been on Gleevec with my current daily dose set at 400mg per day.
My results have been good with exception of a couple of glitches over the past 3 years.
(only 2 results did not come back "undetectable" using the PCR method)
Last week I had my Gall bladder removed by key-hole surgery, due to the presence of stones.
Post operation I found the the Gleevec was turning an uncomfortable situation into an unbearable one. The new side effects were sore eyes, blurred vision, moderate fevers and general poor response to the healing process.
Ater discussing this with my Haematologist on Monday, he agreed that I should take a 4 day holiday to aid the recovery and improve my state of mind. As I am his first Gleevec patient to undergo this surgery, he is as much in the dark about the side effects as I am.
I would appreciate comments from anyone on the forum who has first hand experience of the same situation and how it affected them.
Thanks again and best wishes to all
You are here
Gleevec treatment and Gall bladder removal
Dear Basil,
I do hope you have improved and the glivec 'holiday' has solved the post operative side effects and slow healing response.
Please let us know how you are and if the drug holiday helped.
Best wishes,
Sandy
The problems I experienced post my operation lasted a few weeks only. After approx. 4 weeks I felt great again - in fact better than I felt in the preceeding year.
What I thought Gleevec side effects were side effects of the Gallstones.
I no longer get the bloated and uncomfortable feeling that followed a good meal.
The only negative effect is that I now have to watch carefuly what I consume, although that is also improving as time goes by.
It was only necessary for me to take a 3 day break form Gleevec.
This allowed my body to deal with the slight inflamation effectively.
In mid January I had my normal Liver function tests as well as my RT/Q-PCR tests done.
My results were BCR-ABL "undetectable" and all fine with the liver and FBC.
This in now my fourth year in "remission".
I am still on 400mg per day and it looks as if there are moves here by Novartis to start doing Gleevec levels testing. But apparently this is still in discussion stage. In any case I will be corresponding directly with Novartis here in SA to pressure them on this decision.
I feel the optimal dosage of Gleevec varies from case to case and with this information at hand optimal levels per patient can be established and applied.
The drug is very expensive here, and state funding is not available. So I may find for instance that I could save my Medical Fund a lot of money per annum, if only 300mg doses would be necessary to maintain my PCR status.
Kind regards
Basil