28 replies to this topic

[Marnie]

I've been fighting tendonitis in my shoulder/arm for over 3 years.  It gets mostly healed during the winter, and then motorcycle season gets started and it kicks back in.  Wish I had a solution.

[Trey]

"my hematologist said that I would be a candidate for an upcoming stoppage trial for patients who have maintained ~ 0.01% IS (low detectable) for a couple of years."

 

The alternative theory is that you keep driving the high level leukemic stem cells to divide themselves out of existence in the presence of TKI drugs.  This could take multiple years.  This is the train I am riding.  If I am wrong, not much is lost.  If I am right all is gained.  Victory belongs to the patient patient.

[gerry]

Hi Dan,

They are conducting that trial in the UK at the moment, I haven't seen any results from it, but your doctor might be seeing them.

 

The trouble with CML is they can't test low enough to say it is really gone, so what is the difference between someone that has been off their TKI for at least 8 years and still showing PCRU and if and when Trey eventually decides to come off.

 

I have a friend who was taking 200mg Gleevec keeping PCRU, CML came back when she tried coming off, but the low dosage was enough to hold it in check. She went back on 200mg and returned to negative.

[Billie Murawski]

Hi,  I'm not big on vitamins but there are a couple that I believe did help me. I've been hobbling around for a few months now and I just now remembered a few years back I was having trouble with my knees and I tried glucosamine I only took it for about a week but my knees were fine. A couple times after that I took it for a few days if my knees hurt and it fixed me right up. What a dummy I am I'm going to call my onc Monday and see if it's okay to take. Darn brain fog.

[BigAl]

I am having the same symptoms of chronic tendonitis everywhere, I cant start naming the areas, from the knees to arms shoulders, bad back and plantar fasciitis. I used to be very active at the gym today I worry about over walking. 

 

I was diagnosed in 2004 and on 800 mg Gleevec ( I know its high  but tried to reduced and the pcr came back positive. I am also a big man, maybe reason i need high dose) I am 44yo.

 

Any recommendations would be highly appreciated.

 

Thanks everyone....

[gerry]

My doc was always trying to switch me to Tasigna, said his patients had less muscle and joint issues.

[BigAl]

My doc was always trying to switch me to Tasigna, said his patients had less muscle and joint issues.

Hi Gerry, did you end up switching to Tasigna?

[Billie Murawski]

I am having the same symptoms of chronic tendonitis everywhere, I cant start naming the areas, from the knees to arms shoulders, bad back and plantar fasciitis. I used to be very active at the gym today I worry about over walking. 

 

I was diagnosed in 2004 and on 800 mg Gleevec ( I know its high  but tried to reduced and the pcr came back positive. I am also a big man, maybe reason i need high dose) I am 44yo.

 

Any recommendations would be highly appreciated.

 

Thanks everyone....

Holy Cow Big Al 800mg, are you siamese twins? Have you tried Sprycel or Tasigna, no wonder you hurt all over. I sure hope they try a better way to treat you. (My Advice) drink lots of wine, it's a natural muscle relaxer.

[gerry]

No, I stuck with Gleevec until I came off.

But my doc mentioned one of his patients went up a grade level in basket ball after switching due to lack of muscle pain from Tasigna, though we are talking Australian basket ball here not US.