Advanced Member
Posted 27 April 2014 - 08:29 AM
I know its one of the big side-effects, but does anyone know why? Im dealing with a really sore hip joint (and, to a lesser, my knee) & getting pretty tired of it. Granted, I havent been on it for even a year (dx 11/13) but normally its only lasted a day or two. Also, its always on the left side of my body - whats up with that ??
Anyone else deal with this?
ps - other than the joint pain and some occasional tiredness, Im handing the medicine pretty well (300mg 2x day)
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
Member
Posted 27 April 2014 - 08:39 AM
Hi
Why did you select this TKI ? What was your 3 months pcr ? Any chance of considering Gleevec ? how are you doing now?
Thomas
Advanced Member
Posted 27 April 2014 - 08:59 AM
They put me on it at the beginning. My SOKAL score (or whatever) was elevated due to spleen size. 3 mos PCR was 7.5 on one test & 12.0 on another test taken a couple weeks after (my specialist didnt like the lab that did the first test).
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
New Member
Posted 02 May 2014 - 12:29 PM
I went through a period of about 3 months, 6 months into treatment, where my knees hurt very bad. My doctor suggested pushing through it with mild exercise. The pain is gone now, but I'm not sure if it was simply time or the exercise that helped.
Advanced Member
Posted 05 May 2014 - 08:07 AM
I am still Sore after almost 7 months on Tasigna. my knees hips and hands ache constantly I have been on a half dose of tasigna for 3 weeks now and its still the same?? I suppose it will take some time to adjust to the new dose. I actually am more tired on the lower dose?? Go figure. Ive been seeing a deep tissue massage therapist that has helped allot! which is weird because the pain is sooo deep. I also underwent a bunch of testing for R.A( Rheumatoid arthritis) I kept throwing a positive for it, but turns out I do not have it, its just the lovely side affects of our TKI'S. I think I spend half my life in my jet tub after work for some relief Hope you find something that works for you. I'm just glad to be alive as I'm sure you are too
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
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