Jump to content


CML & Bone Marrow Transplant


  • Please log in to reply
5 replies to this topic

#1 familyof6


    New Member

  • Members
  • Pip
  • 3 posts

Posted 20 July 2014 - 07:08 AM

I was DX in August of 2009 and I have been on every TKI there is. My body has either not tolerated or not responded to them and I now have a consultation with the Bone Marrow Transplant team this week. My question is, has anyone here who has CML had a BMT? How did you handle it and how old were you when you had it done? I am a 35 year old male, who is "healthy" other than that nagging CML.


My biggest concerns are recovery. I have 4 kids and I am married, as well as, own a small business that is just now gaining traction and growing. Any insight would be much appreciated. 

#2 Melanie


    Advanced Member

  • Members
  • PipPipPip
  • 219 posts
  • LocationArizona

Posted 20 July 2014 - 05:10 PM

Sorry you're having to consider a SCT.  My doctors have been steering me in that direction too for the same reasons so I've done quite a bit of research. There's very few transplants done now for CML thanks to all the TKI drugs.  The transplant team that you meet with will explain all the risk, recovery expectations, etc.  You will then be able to determine the impact it will have on your life and family. It's a very serious decission to have to make and my heart goes out to you.  Since you've been fighting this for 5 years, where are your numbers now that make a transplant your only option?


On the positive side, you have age on your side and if you have a sibling for a match, then your risk level drops quite a bit. SCT is also the only known possible "cure" for CML.


Best to you!






Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#3 familyof6


    New Member

  • Members
  • Pip
  • 3 posts

Posted 20 July 2014 - 11:31 PM



Thank you for your response!


The only TKI that  I responded to was Ponatinib and I was able to reach MMR. Last October when all the negative reports came out about Ponatinib I pulled myself from the study (wish my Doctor had put up more of resistance to that discision) and started on Bosutinib. My numbers quickly reached back up to 27% on the International scale and I made the decision to go back to Ponatinib because the risk out weighed the side effects. I'm now waiting to see my first months numbers (BCR/Abl) back on Ponatinib but, my pancreas is now saying no to the drug. 


Now I meet with the BMT team on Tuesday to discuss as my next option if we can't control my numbers on Ponatinib.


Kind Regards,


#4 tinman1939


    Advanced Member

  • Members
  • PipPipPip
  • 53 posts
  • LocationRockwall, TX

Posted 21 July 2014 - 09:00 AM

Loren -

I have been on Ponatinib (Iclusig) for more than three months now.  Prior to getting my first BCR/ABL with this new TKI, my oncologist wanted me to consider taking the first consultation steps toward a BMT.  However, I wanted to wait for my first BCR/ABL test on Ponatinib.  The results were quite hopeful, but not spectacular. Before Pontanib, my BCR/ABL ratio was 56%.  After three months on this TKI, it is now at 16%.  A huge improvement, yes, but the goal in the first three months was to get under 10%. Since I was short of that goal, my oncologist bumped-up my daily dosage of Ponatinib from 15 mg to 30mg per day (doubling the dose).  I am fully confident that I will be well under 10% in another three months, perhaps even less than 1% (complete cytogenetic response).  Of course, our goal is to get better than .1% (major molecular response). 


Given my improvement the first three months on Ponatinib, I cancelled my consultative appointment with the BMT team at the cancer center.  In my mind, there is no reason to take such a step - even preliminarily - when I am responding so positively to the Ponatinib treatment.


For the record, I am 60 years old and otherwise healthy.


I am not ready to roll the dice on a BMT.  It just seems such a drastic step.  I would rather focus on my Ponatinib treatment these next three months.


Of course, we are all in different stages of our treatment, so my experience may or may not be helpful to you.


Best wishes.



#5 Trey


    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 21 July 2014 - 10:20 AM



You might want to read this while considering a bone marrow transplant :

http://community.lls...ics +transplant


If it were me, I would wait and see what the next PCR says, since it would be the first one since re-strating Ponatinib (Iclusig).  I would try to stay on any drug the works well enough, even if there are side effects.  The impact of a BMT (chemo plus radiation) on your body will be much greater than the TKI drugs.  A BMT/SCT has significant other risks, and the docs who perform them routinely underestimate those risks.  And there would likely be a lifetime of graft vs host (autoimmune) issues which would reduce quality of life.  But having said all of that, if one is needed, then it is necessary, but only after failing all other drugs, but possibly living with side effects even as difficult as pancreatitis. 

#6 hannibellemo


    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 21 July 2014 - 03:26 PM

family of 6,


I'm sorry you find yourself in this position. It might be helpful to you to take a look at the Transplant discussion board and talk to some of those folks about their experiences. Tex posts frequently on the AML discussion board and just celebrated a BMT/SCT milestone anniversary (sorry, Tex, can't remember if it's 5 or 10 years!). 


Your age is in your favor but it would still scare the pants off me unless there was absolutely, positively no other option.


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>

Also tagged with one or more of these keywords: BMT, SCT, CML

1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users