Jump to content


Photo

Gleevec vacations and dosage cuts?


  • Please log in to reply
6 replies to this topic

#1 BPilgrim

BPilgrim

    New Member

  • Members
  • Pip
  • 8 posts

Posted 28 November 2011 - 04:21 PM

Hi all.

Is there any consensus about the safest way to take a break from Gleevec without risking relapse from PCRU?  One week, two weeks, more? 

And how long should it take for side-effects to dissipate after stopping Gleevec?

Also, have many people lowered their dosage of Gleevec to 300mg or less?  Has it made a big difference with side-effects (fatigue, muscle pain, etc.)?

Thanks.



#2 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 29 November 2011 - 06:47 AM

Trey will no doubt correct me, but I don't believe there is any real consensus here as there isn't enough data yet - so any departure from the standard regime is looked on as somewhat experimental.  There are a few small trials for stopping entirely and the 'consensus' on those seems to be a minimum of 2 years PCRU before stopping and close monitoring for loss of response.

There have been a few people on here dropping to 300mg to reduce side effects and it seems to have worked well for some of them.  People have speculated about being able to take an even lower 'maintenance dose' once in PCRU, but it is all very much speculation at the moment.  One possible avenue for you would be to ask your doctor to test your blood plasma levels of Glivec as the oncs like to keep them above a certain level (1000ng/l if I remember correctly).  If you are well above that level then your onc may consider a drop in dosage less 'risky' than for someone who was at or below that level on 400mg.

A short, one-off break from the meds for a good reason shouldn't be a problem, but discuss it with your onc first.  Frequent, random breaks without monitoring would be too close to playing Russian Roulette for my tastes.  If you do take a break the half life of Imatinib is only 18 hours, so you should start to see changes fairly quickly - after 3 days your blood Glivec levels would have dropped by a factor of 16.

If the side effects are a big issue, you should also think about just swapping to a different drug.  Many people have found this gave them significant relief from side effects and it is probably a 'safer' option.

Phil



#3 random

random

    New Member

  • Members
  • Pip
  • 0 posts

Posted 29 November 2011 - 07:29 AM

About lowering dosage please read my story here: http://community.lls...tart=0&tstart=0

Just what happend to my friend but that's not a general truth for all people.



#4 Tom_md

Tom_md

    New Member

  • Members
  • Pip
  • 0 posts

Posted 29 November 2011 - 10:47 AM

I can offer the following based on my experience

Personally I avoid breaks from G unless essential.  I have had 2 breaks recommended by Onc since Aug 2008 (diagnosis time) due to side effects, once due to severe swelling, then over all exhaustion, not feeling well etc.  CML wise I responded very well was PCR-U in less then a year.   

When I resumed my second break I resumed at 300 mgs, been doing this none months now getting ready for next check (9 months since dose reduction).   I was still undetectable at 3 month and 6 month check.  Side effect wise it has made a great difference to me, I still get some side effects, but they are much more manageable and they don't last.  For example,  After heavy physical work get some muscle pain but it improves in a few days, I still get fatigue, but if I slow down and take it just a little easy I can get back in a day or so.  I am very active, work full time, have two children, so I am always busy.  I feel like now is probably the way a person my age(48) normally feels. Before I would not improve for at least a week and it was like I was always having some issue.  Now I feel like I can manage the situation.  It took several months for the dosage reduction to really have a positive impact.  It happened gradually then at 4months from that time I all of a sudden started feeling alot better.  I still get some tough joint pain, but I wonder if it is not related to CML or Gleevec.

Hope this info is helpful.

Tom



#5 BPilgrim

BPilgrim

    New Member

  • Members
  • Pip
  • 8 posts

Posted 29 November 2011 - 10:56 AM

Tom, when you did take a break from Gleevec, did your fatigue go away quickly?

Thanks for the replies everyone.



#6 CMLSurvivor

CMLSurvivor

    New Member

  • Members
  • Pip
  • 0 posts

Posted 29 November 2011 - 11:10 AM

I would not do anything unless it is recommended by your doctor. When they reduced my dosing on Gleevec to 300mg the doctor is the one to recommend it. But I have been in Complete Molecular Response for over 3 years and had responded quickly to the drug itself. It is all based on the individual and how they respond to the treatment plan there doctor put into place. Good luck!



#7 Tom_md

Tom_md

    New Member

  • Members
  • Pip
  • 0 posts

Posted 29 November 2011 - 11:18 AM

Interestingly during the break from the G, there was not a huge reduction in the fatigue, it was a little better but not a lot.  It was also very stressful, because I wondered if I need to tough it out and deal with the fatigue.  I really did not like being unmedicated.

Secondly (and most importantly) I would like to second what CML Survivior said.

I had been PCR-U for close to two years when my dosage was reduced, also had very fast initial response.  Getting the blessing from an Onc you can trust is essential before reducing dosages or taking breaks.

Tom






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users