31 replies to this topic

[LynnieR]

Trey is this (200 mg a day) your current Gleevec dosage?

[LynnieR]

I think it is the Gleevec, it is an amazing medicine, but on the other hand, I think it has caused me many side effects.  I have been PCRu six months into my diagnosis and treatment....for me, I have started to lower the dose of my G and hoping (praying) for the best.

[Trey]

Lynnie,

Yes, taking 200mg per day for the past couple years.  Continuous PCRU for over 5 years now.  Your story of fast response to Gleevec is similar to mine. 

[lala]

Hi, Trey, six years into cml, responded quickly to gleevec, asked you about this before......do I dare cut back to 200?  My doc says no as he wants to follow normal protocol.......would love to lose the side effects.......joint pain and muscle ache......and fatigue.  Thoughts?  My six month check up is in feb.........thinking of seeing a cml specialist in the summer....thinking they are more comfortable with less gleevec....thoughts?  Thanks!  ~Lala

[Trey]

Lala,

All I can tell you is that I responded quickly to Gleevec, so I believe my body can uptake lower dosage with greater efficiency than many others.  So for me individually, it seems that I can do well on lower dosage as a maintenance therapy over the long term.  I have been on 200mg for about 3 years now, and continually PCRU for well over 5 years.  I doubt you will find any Onc willing to agree with such a protocol.  Whether anyone else can replicate my apparent success is beyond my ability to predict.  I am merely reporting my experience, not encouraging anyone to do anything in particular.  But I can say that I would not have done this unless I had been a quick responder (PCRU within 8 months), and had also been continuously PCRU for about 3 years prior to lowering the dosage.

[Susan61]

Hi Trey:  That is great how fast you responded to the Gleevec and get to PCRU.  I know I was PCRU in 2003, and not sure if I had achieved it before that.  I do not remember, and I only have my records back to 2003.  I am PCRU for 8 years now, but as you know I would be afraid to cutback my dose.  I am going for my PCR test this  Monday, and I still get anxious for those results.  I can certainly understand you not encouraging anyone else to try it.

It does not work for everybody as we know.  I hope you stay on this track, as it really inspires everyone at how well youcan do on these TKI Drugs.

[valiantchong]

May I know what your lower dosage now and have you been on std dosage of 400mg for 2 yrs before consider lowering ?

[jstevens11]

Has anybody come up with a solution to the brain fog? It's driving me crazy!!!!!

[Taylor]

I get this occasionally on Tasigna.  At first I had trouble coming up with words--although before I was diagnosed, I was bursting vessels in my eyes, and one day I had a hard time with tip-of-the-tongue stuff, maybe I had a small vessel burst in my brai (we didn't do a scan but it's something they asked about, but I didn't recall that it happened until later). 

Nowdays, I have the problem off not really being able to "get with it", like I can't really focus and mundane tasks just seem grueling and I don't want to do them.  So it's either brain-fog or just laziness

[pamsouth]

I have been on Gleevec for  6 1/2 years and the first couple of years was bad.  Now I am doing pretty good.  However I just turned 64 and I think as most people age, maybe a little forgetful, but nothing like it was when I first started on Gleevec.  I felt like I was in a third dimension or something, hard to explain.

Pamsouth

[jrsboo]

I think I just posted this on another thread, but I have found that doing puzzles or games on the computer really has helped with the brain fog.  Just like exercising your body, retraining your brain to be active can help.  I play wordtwist (a boggle like game) and fancy solitaire games, where you have to learn new rules to play about 100 different versions of the game.  I also find the brain fog is much worse when I am tired. or have pushed myself too far, and did not get my now daily required nap.

Good luck,

Caroline

[LynnieR]

I was diagnosed July 2009, I started taking 200 mg on Fri and Sat about a year ago.  As of December 2011 I have been alternating 400mg one night 200 or 1/2 a tablet the next.