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#1 sferrazza

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Posted 06 May 2012 - 07:04 PM

Hello fellow CMLers,

I have not been in on the chats in a long time but recently having severe joint pain.  I've been on Tasigna for 1 year and things were going fine just the occasional headaches, nausea, and fatigue.  About  two weeks ago or maybe more then that I've notice the joints in my hands are killing me especially in the mornings but never goes away.  Also my hips and knees are horrible.  I have trouble going down stairs it hurts so bad.  Anyone else having this issue? Thanks~



#2 mariebow

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Posted 06 May 2012 - 07:30 PM

Before I was dx with cml I was having trouble with my hip joint so that I cannot go walking without feeling pain and cannot contiue, also last year I started having elbow joint pain with swelling and also knee joints hurt at times.  I have had my hip joint xrayed, but they could not  find anything, but it gives away when I walk.  I was having these joint pains before taking Tasigna, I read that this is a symptom of leukemia, joint pain.



#3 Trey

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Posted 06 May 2012 - 08:25 PM

The TKI drugs can cause subtle changes in how the bones process calcium, phosphorous, and magnesium.  This can lead to bone and joint pain over time, which does not show up immediately.  There is also a type of bone pain that comes on early after starting TKI drugs, and the cause might be related, or may be another mechanism at work.

Marie's pain in the hip was due to marrow internal pressure caused by being packed with too many cells.  The rapid reproduction of WBCs overcrowds the marrow, and the cells cannot escape fast enough into the blood, so pressure builds.  This is called "packed marrow".  Many of us had it before diagnosis.  I could barely walk due to the pain.



#4 mariebow

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Posted 06 May 2012 - 08:36 PM

Thanks Trey for explaining my hip pain,



#5 pamsouth

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Posted 06 May 2012 - 09:01 PM

Sferrazza,

I have had bone pain for a number of years, even before being diagnosed with CML in 2005. Been on Gleevec since 2005.

Bone pain,  seems to have gotten worse, that could be partly due to my age of 64 years.

Recently I took a few classes in Intro Massage therapy, did about 5 massage. 

Turned my guest room into a massage room, my husband and I painted the room and steamed the hardwood floor etc. Also helped my husband paint the downstairs bedroom. That was back in Feb.

Needless to say tendentious set in, mainly my left arm and hand, can barely use the left thumb and hand is weak. 

The problem with the hands and arm are a new thing.

The pain in my neck, shoulders and lower lumbar, have been going on rather seriously since 2003. 

I remember it clearly, we were getting ready for a long trip. I sas sitting at the computer, it was early 2003, and all of a sudden my shoulder locked up.  Been going to physical therapy off and on for years.  

Bone Density test was mild arthritis.  Blood labs, was borderline vitamin D and magnesium.

I have been going to physical therapy off and on since about 2003. 

Started back about 2 months ago, for my hand and arm and back.  It helps but it seems to be a lifetime problem.

Its frustrating with the hand issue as I drop things and hard to use to pick thing up. 

PamSouth


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