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Stopping Glivec

Hello,
I was wondering if someone can help me/share their thoughts regarding the above.

I was diagnosed with CML 4.5 years ago and have been on Glivec 400 since then. I did not have many side effects until three months ago, I started feeling pain/discomfort in my left leg which greatly affected my day to day quality of life (sitting for long hours, driving and exercising).

I consulted with my doctor at Hammersmith who arranged for a bone marrow biopsy to see if it was in anyway related to CML and if the disease was progressing. The doctor also arranged for an MRI and CT scan. Fortunately all the results came negative and they confirmed that CML is under control. However they could not tell me the reason for this persistent pain/discomfort.

To rule out any possibility that it could be a side effect of Gilvec, my doctor suggested that I should stop medication for four weeks and see if the pain goes away. My last PCR was 0.014 which was taken six weeks ago. The doctor is of the view that stopping therapy for 4 weeks would not make much difference in my PCR levels.

I know that there is a trial to stop Glivec but I am not sure what the results are for that trial. Though I am not planning to stop therapy in the longer term, I am interested to stop just for four weeks to rule out any correlation between Glivec and my leg pain.

I would like to know if someone has stopped Glivec and if their PCR levels went up/stayed the same and if they were fine to go back on Glivec or did they have to change therapy.

I would really appreciated any help/suggestion.

Regards

Shahid

see this discussion thread further down -

http://www.cmlsupport.org.uk/node/8596

Hi Shahid

I have reduced my Glivec dosage from 400mg to 200mg on the Destiny trial at Hammersmith
over the last 6 months
Readings have been over the six months --- in order
0.003
0.002
0.003
0.003
0.021
0.004

So little change over time which is good news and after another 6 months if the readings remain similar I will stop altogether. I was told the first three months figures would show little change and that was true but they have fortunately remained low.
I was told I could withdraw from the trial at anytime and resume taking Glivec to no ill effect.
Stopping for a short time under the advice and supervision of your doctor should not be a problem.
It might provide some useful information for you.
Good luck

Barry

Hi Barry... your results are looking very stable on half dose. Best of luck for a continued good MR and even a TFR should you continue on the trial and eventually stop.

best wishes,
sandy

Hi Barry,

Thank you for the information and good luck with your PCRs over the next 6 months.

Regards

Shahid

This from the thread Sandy linked to:
I had been taking Imatinib 400mg for six and a half years when I stopped because of particular side effects. My PCR results after the first year had settled to around 0.003% with a few zeros thrown in for almost all that time. I stopped in November 2013. My PCR levels rose in a roughly quadratic curve to nearly 0.3% by the end of May 2014. I then went back on Imatinib 300mg and my PCR level had fallen to 0.076% by mid-September. Another test next week when I hope it will have fallen to around 0.040%

Unfortunately, that next test in early November showed a rise to 0.091%. Not a great deal, but in the wrong direction. That may be a glitch - I've seen them before, so I'm not worried for now. Next test in 6 weeks.

I have in the past stopped for about two weeks due to surgery with no noticeable effect on PCR tests results.

John

Hi John,
There is really very little difference between 0.091 and 0.076% for it to be considered a rise. When is your next test due?
Sandy

Hi Sandy,
Not a great difference, as I said, and I am not concerned. However, it bucks the trend. That could be down to all sorts of things, including test error. I have seen that before when, on stopping Imatinib, the well-behaved increasing curve showed a clearly rogue value. Next test on 15 Jan.
John