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weak immune system after years of remission?


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#1 rshams

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Posted 30 June 2013 - 05:07 PM

Hi All,

Briefly, I'VE had two bouts of CML, first in chronic then 11 yrs later in blast, 2 successful Allo BMTs.  In remission now for 9 years, off of Gleevec for over a year (knock wood). here I am at age 36 having lived with this For 20 years.  That said, I'm sick all of the time. I literally get bronchitis every two months, bad enough to I frequent the ER. It seems I pick up everything that goes around.

I just wanted to ask, does anyone else have a weakened immune system this far out?

Other than that I feel that everything has been a miracle and I'm happy just about all of the time.....when I'm not sick.

Thanks for your responses.



#2 hannibellemo

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Posted 30 June 2013 - 07:27 PM

Congratulations for living 20 years with CML and many of those years before any of the really useful treatments were available! I wonder if you wouldn't have better luck with the Transplant discussion board? I only say that because you aren't on a TKI and very few, if any, of us posting today have the experience of a BMT  for CML. Many people from the other leukemia and lymphoma boards may have more experience with the effect the BMT has on the immune system - and I'm sure there is a HUGE effect.

Tex, I know you sometimes read our discussions, too, and have first hand transplant experience. Do you have any words of wisdom for rshams?

Good luck and thanks for sharing your story, I hope you get some support on these discussion boards!

Pat


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"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 01 July 2013 - 09:08 AM

Generally we do not have a weakened immune system after the drugs have done their initial work.  Even some level of low blood counts does not usually qualify as a weakened immune system since the body can still respond quickly when needed.  But a BMT (especially two of then) likely caused some amount of graft vs host disease (GVHD), maybe at low levels, which may appear as issues such as bronchitis or something that acts like it.  The mucous areas and skin can often be affected by the chemo drugs, leading to such issues. 

http://www.ncbi.nlm....pubmed/23721594

You should ask your doc about GVHD and also be checked for an underlying cause that may or may not be associated with GVHD.



#4 Trey

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Posted 02 July 2013 - 04:57 PM

I also found a reference to Gleevec inhibiting GVHD after BMT.  This is due to some off-target kinase inhibition by the drug (unrelated to controlling CML).  It is possible that the Gleevec diminished some of your GVHD until you stopped taking it last year.  Maybe you should re-start at low dose -- ask your doc.

http://bloodjournal..../114/3/709.full



#5 rshams

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Posted 02 July 2013 - 05:57 PM

Thank you for your input Trey. I'll have to bring that up with my onc next time i go in.  Bronchitis was always my weakness before I got sick, but this seems to be much more frequent than ever.  I do all of those good things one should do, and my bloodwork is always stellar.  After going in every 2 months for BCR ABL tests, my onc said I only need to go in every 6 months. I wonder if being on Gleevec so long has permanently compromised me.  Not that I'm complaining!  If they'd had that back in 1993 when I was first diagnosed in chronic phase I might not have had to go through 2 transplants.

Maybe it's time to make good on that threat to go to Lourdes!






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