Reducing Glivec Dose

Dear John,
I am a little worried.. not to say astonished... that your consultant has reduced your dose from the internationlly agreed recommended dose of 400mg imatinib for chronic stage CML down to 200mg. It is generally agreed that adult doses of imatinib under 350mg are sub-optimal.
What were the reasons he gave you for reducing your dose?

Sandy

Dear John,

Go to News on main menu and scroll down to near the bottom of the page to find this interview:

Making History, Making Progress
Brian J. Druker, MD
March 26, 2008 •
DR. Brian DRUKER:

Scroll down to page 9 for Dr. Druker's opinion of lowering doses of imatinib. He is very cautious without first testing for blood plasma trough levels.........see quote below

"Now it also earns some caution in that I would certainly not recommend lowering doses below about 400 milligrams, unless there was very good rationale to do that, plus some supporting data. The supporting data I would be looking for is drug level. And through the CML Alliance, which is a Novartis sponsored program, we can now do drug level monitoring. We can actually find out whether a patient who is having severe side effects with Gleevec®, maybe their drug levels are too high, maybe we could get by with a slightly lower dose. So if we monitor a drug level, we can actually tailor a patient’s dose to acceptable drug level. We certainly know that if we lower drug levels below a certain threshold, we might select for resistance. So that’s why I would advocate being very careful about lowering doses, doing that with a physician
who has some experience with what those levels should be and can help guide people through treatment."

Sandy

I completely agree with everything that Zavie has said!
I am also PCRu-U & have been for several years with just the occasional slight positive bounce.
reducing the Glivec dosage could lead to resistance.
My Dr is conducting the clinical study in which people who have been PCR-U consistently for 2 years are able to stop their Glivec but they get their PCR checked EVERY month, not after 4 months!

Dear John

I am sure your doctor would understand your worries regarding possible resistance with sub-optimal doses of imatinib. I do not think you need to find another doctor... after all you are very happy with the treatment you have had so far and as you say, he is very approachable.
My only worry is, as I indicated in my first post, that you are not being monitored often enough..i.e every month. I do not think gaps of 4 months between pcr tests is wise.

Professor John Goldman, Dr. Tim Hughes, Dr. Druker, Prof. Michele Baccarani amongst others have just launched the International CML Foundation. This initiative will support haematologists understanding of the issues surrounding monitoring cml patients on long term TKI therapy. Take a look at the website... it might be a good link for your doctor.

What is the ICMLF?

It is a Foundation established by a group of hematologists with a strong interest in CML. ?Our mission is to improve the outcomes for patients with CML globally. We are currently registered as a charitable foundation in England and Wales but our charter is global.

www.cml-foundation.org

Sandy

Hi Janet, I googled cml foundation & its the 3rd one down

Dear John, Thankfully I have a history of 0 PCR's (on Glivec 8 years). Recently my Consultant told me that fifty percent of patients with 0 PCR's revert to a higher PCR again after taking a Glivec holiday. My Consultant will not even reduce my dose from 600 mg to 400 mg ~ not that I want to because I feel safer this way despite some side effects. As Sandy said I also find the four month wait for another PCR a risky idea. I hope your situation gets sorted out to your liking very soon ~ keep smiling and keep being an educated patient. With best wishes.

I have been on 400mg since April 2007 and for the past two years my PCR has ranged between 0.002% and 0.008%. The doc at Hammersmith suggested that this was an order better than was necessary and that I could go down to 300mg with perhaps a small increase in PCR and reduced side effects. They would then do a PCR test every six weeks until they were sure it was OK. She said they have several patients who have done this successfully.

That was back in January. I didn't do it because my side effects are not that bad and I was heading for some major surgery and didn't want to risk complications. However, the surgery is over and I may reconsider it next year.

John

Hi Jamal,

My situation is not quite straightforward.  I stopped Imatinib 400mg for some six months at the start of 2014 because I developed macular oedema following lens replacements, which showed signs of having been been triggered/agravated by Imatinib, but I shall never be sure.   I went back onto Imatinib 300mg and my PCR is not quite as low as before, but still very acceptably low.   I have not noticed any change in side effects, but then they were mild on 400mg.   I'm afraid that doesn't help you much, but I can only tell you what happened to me.

P.S.  An afterthought.   During my first year on Imatinb the side effects were bad.   Then my body seemed to settle down and the side effects became slight.   When I stopped Imatinib for six months, apart from an improvement in the macular oedema, I did not notice any marked change.   When I went back on to 300mg Imatinib, there was a slow but steady improvement in my PCR results.   I did notice some minor side effects for a short while, but they subsided.

Best wishes,

John