Hi All,
After being on Glivec/imatinib for nearly 14 years we are going to stop for up to 3 months in a few days as in early November we are scheduled for the implantation of iodine-125 seeds into to the prostate to kill off the beginnings of low grade prostate cancer and the haema-oncologist and and the medical oncologist are concerned about the possible side effects /interaction of a tki with targeted radiotherapy;the medical literature is very sparse on this in terms of side effects.
We will go on to monthly pcrs and if we lose very rapidly the existing MMR s of 4.5 (and often undetectable) then we can go on to interferon alpha on a temporary basis. I would assume that there there are some CML patients who like me have to discontinue for a specific reason so my query is did you experience any withdrawal side effects? For instance I have been experiencing night cramps plus muscular inflammation as a side effect for years and years so will this disappear or become more intense?
I looked at a video on this site and Professor Timothy Hughes of University of Adelaide who did a very informative presentation on discontinuation of tki s and he suggested that up to 25 % of such patients suffer further side effects eg muscle stiffness and joint issues.On the bright side if I am one of those 50/60 % of discontinuers who do not lose their remission then this would be a huge benefit and also very interesting.
In hindsight if we had reduced from 400 mg to 200 mg imatinib for a period prior to stopping would we then have a better chance of success-a study in Lancet suggests this.
Please if you have any stories or studies I would welcome your response.
Best wishes
John
