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question about pain in my thigh.

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#1 AmyH


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Posted 12 March 2012 - 04:01 PM

Hi again!  Went to the oncologist this past week and all of my blood work is still looking good.  I wrote about this before, but when I was diagnosed back in January, I had this huge knot (the size of a baseball) inside my thigh.  My oncologist said it was a mass of leukemia cells, but after starting Gleevec is went away within a week or two.  The problem is now ...my thigh still hurts where that was at.  For those of you that had knots as well (I know there was one lady on here that did) how long did it take for that not to hurt?  Do you think it's normal for that area to still hurt?  It's not like a throbbing pain or a stabbing pain, but I can still tell it's there and it annoys me and freaks me out a little bit.  It's just a tender area. 

Also, my oncologist suggested I see a leukemia specialist when I went back to the states (we are living in Germany right now) and I'm going back to the states for a visit in April.  What do you think?  Will they tell me anything I don't already know?  Anyone go to any leukemia specialists in St. Louis??

Thanks so much!


#2 hannibellemo


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Posted 12 March 2012 - 04:39 PM

Hi, Amy.

I'm the one that had the knot - mine also disappeared and I didn't think anything more about it. I just had a BMB 3 weeks ago and I can feel that I still have some inflammation there although it is not painful. I guess I wouldn't worry about it but you might mention it when you get home.

I grew up in Hannibal, MO so I am pretty familiar with St. Louis. I noticed when I was checking out the NCCN Guidelines that one of the docs on the panel was from Wash U., (his specialty is breast cancer, however).  If you go to the Siteman Cancer Center website you can check out all the docs and their specialties. Do be careful who you choose if you go there, that is a large transplant center, too.

Good Luck!




"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#3 Trey


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Posted 12 March 2012 - 08:29 PM

It is probably just a residual absorption issue rather than a CML issue at this point.  The tissues may take a while to clear out.  It is also possible to have "phantom pain" in such a case where there was previous "injury". 

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