10 replies to this topic

[Tess]

I take 400mg gleevec and  have been undetectable for 10 years.  I have a question for Trey - when did you reduce dosage (on gleevec) and did you reduce from 400 to 300 to 200, and how long have you been on a lowered dosage?  I would like to reduce mine but was wondering whether start at 300 then eventually to 200 and what is the best dosage to be at since I have been undetectable for so long?  Have you noticed a difference in how you feel on a reduced dose? I just feel that if I'm undetectable for so long that perhaps I don't need to take as much a dosage to continue to fight this leukemia. 

[Trey]

I took 400mg Gleevec for almost 4 years.  Was PCRU in less than 1 year.  So I was PCRU about 3 years then decreased dosage to 200mg and remain to this day.  All PCRU. 

 

Most side effects went away on 200mg.  Cramps reduced but still an issue, especially in hot summer weather when I sweat a lot.  Taking potassium and magnesium helps. 

 

I would suspect you could reduce to 200mg and remain PCRU.  I did not ask permission from my Onc(s).  There is a growing understanding that a long term "maintenance dosage" is better for the patient than staying on full dosage. 

[survenant]

In my case, after being PCRU for at least 2 years, before I reduce the dosage, i will take pioglitazone for one year and after i will reduce the dosage.

See this link Combination of pioglitazone with tyrosine kinase inhibitor

[gerry]

Have you had a conversation with your doc about reducing, mine was okay with me reducing to 300mg after a year PCRU. I remained PCRU.

[kat73]

Am I correct that to date there have been no in vivo formal clinical studies yet for pioglitazone? 

 

If you are a regular viewer of this discussion board, you would think that a great number of people reach CMR - it's dismaying to find that only 10% do.  My latest PCR bounced me back up and lost me a zero - after 7 years, I can still claim only a stable MR3.5 consistently.  I am beginning to give up the idea that I'll ever get there on 70 mg Sprycel - so I'm definitely looking for some magical booster.  Come on, pioglitazone!

[Gail's]

Kat73, I'm going to discuss with my onc the clinical trial that's about to open. I'm diabetic, but would definitely participate if I can.

Survenant thank you for posting the link!

[jmoorhou]

I'm wondering if I should wait another two years before I reduce dose to 200 Gleevec. In years there is bound to be more information.

[Tess]

I started 400mg Gleevec in 2006 was PCRU in less than a year so it's been 9 years PCRU.  My oncologist does not want me to lower my dosage but he is not a CML expert.  I have been thinking of going to doctor Neil Shah at University of San Francisco since he is a CML expert and hopefully he will agree to reduce my dosage. 

 

Thanks so much, I really appreciate the feedback especially from Trey.  I have wanted to do this for some time but was a little afraid to but now I feel I will be just fine on 200mg.  I just don't see the point in taking a higher dosage if it's not needed and I'm hoping my side effects will diminish as they did for Trey.

[jmoorhou]

I have talked to Neil Shah, he is at US San Francisco, and I live outside of SF. He was very nice and knew what he was talking about.

[Tess]

Thanks, I will definitely make an appointment with him.

[r06ue1]

My Oncologist wasn't too keen on the idea of dosage reduction but he is okay with me trying to stop after two years of MMR or better.  He did say that dosage reduction is required for toxicity purposes but since I am having none and I am having only mild side effects, he did didn't see the need to reduce dosage.  He also say it was my choice however he didn't recommend it.  If I do get to PCRU and remain that way for two years, I'll run it by him again.  I'm probably one of the few that feel safer taking a reduced dosage than stopping completely.  

 

I'm guessing that most Oncologists tend to wait for published data to be on the safe side.