5 replies to this topic

[nathaliece]

Hi friends,

I am interested in any information (formal or informal studies, papers, articles, etc.) about reducing the dosage of Gleevec after achieving and maintaining PCR for a period of time.  I recall that Trey and others have been successful with this.  I have an onc appointment on 1/2.  At my last appointment 3 months ago, my request to discuss this possibility was "dismissed".  I would like to try again but be more prepared.  Any help or information you can provide would be greatly appreciated.

Thanks and best wishes in 2013,

Nat

[Trey]

I was PCRU in less than a year, remained PCRU for about 3 years, then went from 400mg Gleevec down to 200mg and have remained PCRU for 4 years while on 200mg.  Side effects are minimal on 200mg Gleevec.  Still have occasional muscle cramps and some scalp itching.  I think the continued side effects help show that 200mg is a dosage that has impact. 

I believe it is a low risk strategy, and better than stopping drugs entirely which is an approved strategy by some Oncs under certain conditions.  So if stopping is acceptable, why not reduced dosage, also?  Those who think a lower dosage invites developing resistance are deluded, in my opinion.  TKI drugs are nothing like antibiotics which can train a bacteria to defeat it in low dosages.  And some Oncs now regularly use lower dosage such as Dr Cortes at MD Anderson.

The theory that led me to do this (on my own without my Onc's agreement) is that after several years of PCRU we are only trying to keep a "handful" of leukemic cells under control.  So if 400mg works well when our blood is full of leukemic cells, why would we need 400mg when we have only a few remaining leukemic cells to keep under control?  I think 3 years PCRU is the right timing.  I also think that the person should be a "quick responder", meaning they achieved MMR and PCRU fairly quickly.  This shows that the person has unusually good absorption and cellular uptake of the TKI drug.  So a lower dosage actually acts like a higher dosage would for most other people.  That combined with the better than average uptake of the drug allows for taking a lower TKI drug dosage in very low state minimum residual disease.

I have PCRs and blood tests every 6 months.  For me this lower dosage has been the right approach.  I can't say it is right for everyone.

[Susan61]

Hi Trey:  I was glad to see your reasoning for the lower dose, as I was thinking along those lines anyhow.  I felt at the beginning they knew that 400mg was the proper dose, but its true as the years go by and you remain at PCRU then its possible we do not need the high dose.  I always look for your feedback on everything.  I posted in a previous post that I am going to talk to my doctor again about cutting me back.  I asked her 6 months ago, but she refused to budge.

Besides the side effects and putting that much Gleevec into our system, I am very anxious to see how all my counts go after cutting back.  I will post as soon as I know something.

     As you say, it might not be right choice for everyone.

Susan

[GerryL]

Hi Nat,

I was also a quick responder to 400mg Gleevec, but after a year of being undetectable I found my side effects seemed to be on the increase. I think because I was a quick responder, my doctor agreed to let me try 300mg. I would have liked to drop to 200mg, but my doc doesn't like that dosage. He wants me to switch to Tasigna, due to the muscle and joint issues caused by the Gleevec, if I do I will be talking to him about taking a lower dosage of the Tasigna.

[Susan61]

Hi Gerry:  I was thinking she might let me cutback to 300mg instead of the 200mg.  I think my biggest concern is that if I cutback and for some reason lose my PCRU status, would I be able to recover it by increasing back to the 400mg.

I guess thats why I have not pushed the issue, but I do feel the 400mg is effecting me in lots of ways with side effects as well as my blood counts.  I guess I will see what happens.

     I hope all these comments are helping Nat make a decision also.

[GerryL]

Hi Susan,

Go for the 300mg first with your doc and you may eventually be able to ease her into the idea of possibly dropping to 200mg at a later stage. You may find the drop to 300mg enough to improve your side effects and counts. I found a big improvement in most side effects with the decrease, though the muscle and joint pain seems to be on the increase for me.

And as you comment, you can always return to 400mg if the CML makes an appearance, (which I very much doubt) and switching to Tasigna or Sprycel is also an option.

I have a friend here in Aus who was on 200mg Gleevec and remaining negative for a number of years, she is currently having a go at stopping her TKI - in consultation with her doctor. Even 200mg was starting to have negative impacts on her and just wearing her down. If her CML returns she will more than likely start on Tasigna.