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I have been diagnosed as a CML patient since  2005 and have been taking Gleevic 400mg from then till now. I was diagnosed when I was 17, now i am 31. As i have been taking the medicine for more then 14yrs,  I talked to my doctors regarding stooping medicine. The doctor was also not sure if I have to try it or not. So, i am continuously taking the same 400mg daily. My BCR/ABL PCR test result from the beginning are below.

July 22, 2005 100%+(Ph) 
April 4, 2006 10%(Ph) 
March 8, 2007 -        (Ph) 
Sep 8, 2008 20% (Ph) 
Aug 10, 2010 3% + Fish
Feb 15, 2011 0.001% BCR-ABL- PCR 
May 22, 2012 0.02% BCR-ABL- PCR 
Dec 12, 2014 0.001% BCR-ABL- PCR 
Sep 8, 2015 0.0379% BCR-ABL- PCR 
Jul 1, 2016 0.0012% BCR-ABL- PCR 
Jan 5, 2018 0.0097% BCR-ABL- PCR 
Sep 28, 2018 0.0065% BCR-ABL- PCR 
July 7, 2019 0.0059% BCR-ABL- PCR 

Now,

I have some question?

. Should I decrease my dose from 400mg?
. Should I have to take medicine my whole life?
. What is the best time to stop the medicine?
. I have a son he is 4yrs, what is the possibility that he will not be diagnosed with CML in coming future?

So, far I have no any side effects by taking medication and I do not have any problem too. I am living a normal life, like a normal people. But, since few years I have seen some spike in my blood sugar level. Is this due to long term medication?

I also feel like I am losing my hair, not in a rapid but very very slow. Is this also due to long term medication?

The last question is, will there be any major side effects in long term due to medication that will lead to my death. Coz, I know that I will not DIE due to CML now. Some other reason will be my death. 

Thank You,
Shekhar

Hi Shekhar

Great results. My doctor recommends reducing the dosage slowly - so from 400mgs you could go down to 300mgs . Then if you hold that for a few years try 200mgs. Hold that and then try stopping. Hopefully you can get PCR tested every 6-8 weeks on a lower dose . Reducing doses may reduce withdrawal symptoms which some patients seem to get when stopping ( muscle/joint pain etc).

CML is not inherited so your little boy is OK - that was my first question on diagnosis.

If you look on the Facebook site  CML International Network - Journey to a Cure you will find a lot of posts about reduction in dosage and what doctors say about it. Also probably on this site under Treatment Free Remission - much chat about this nowadays. I don't remember how many years are recommended before stopping but this information is on these sites and I'm sure someone else on here will know.

Good luck - hope you do better than me!

best

Chrissie

The info is here in the box "De-escalation of TKI therapy before discontinuation....". See this Home page or the box above the Forum,

Chrissie

Thank You, Chrissie! I will definitely talk to my doctor to reduce to 300mg and so on. I also read the information in the home page. It was very helpfull and had some clear idea on how to move forward is this process. 

Thank You.
Shekhar

Shekhar, I am following the protocol of the Destiny Trial, and am currently PCR 0.01% 8 months after stopping taking imatinib.. There is a lecture from Professor Clarke which explains the approach and the success rate on this link. I hope it is useful.

Hi Shekhar,

Congratulations on your results.

I asked a similar question on this forum some time ago and received great info and support from members of this forum.

You might be interested in reading about the INTERIM trial, in addition to the already mentioned DESTINY.

https://www.cancernetwork.com/chronic-myeloid-leukemia/interim-confirms-...

I don't know if intermittent use of imatinib is something relevant these days, other members of this forum could confirm. However, knowing about it brings new possibilities to the table in terms of imatinib dose reduction.

I wouldn't feel that much comfortable with having a schedule of one month on and another month off Imatinib. One day 400mg and another 300mg sounds better to me, yet I haven't found much info or people trying doing such a thing.

Best regards,

Thank You, AlastairC and Israel,

I will definitely put a topic of discussion with my doctor on my next visit. All the information I went through were very helpful and helped me a lot.