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So discouraged...

BMT CML Transplant

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#1 Brandon G

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Posted 07 May 2015 - 02:10 PM

I am a 27 year old male and I had my first bone marrow transplant in March where I spent 29 days in the hospital. My blood counts have been dropping ever since and it has taken doctors so long to figure out why? I am so frusturated. I have been trying to get my mind right and keep striving forward. The last week has been beuatiful, so I have been taking walks outside everyday. It has really helped me to feel better, my breathing even feels more normal. I felt like I was getting better.


Today, I had one of my weekly check ups, where my doctor told me I need a second bone marrow transplant. My first transplant was successful. I am 88% donor. But the 12% that is still my cells are producing more cancer cells so that is the reason why they want to do the second transplant. Praying that my original donor will donate more bone marrow for me. Has any one had any experience with a second transplant? The doctor said I would just need the bag of bone marrow just like a transfusion, but the nurse said I would have to get admitted and start another (third) round of chemo. I don't want to hit rock bottom again. I don't want to stay in the hospital for a month and deal with all the aweful side effects. If anybody had any advice on their second transplant I would really appriciate it.


They uped my Sprycel to 140mg from 40mg and I'm nervous to get aweful side effects. If the doctor said this chemo medicine and radiation would kill the rest of the cancer cells, why do I have to get a second transplant? I just want to live a normal life. I just want to be in remission. Will this ever get better? Will this port ever come out of my chest?!


#2 Dona_B


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Posted 07 May 2015 - 02:25 PM

Hi Brandon,

I haven't experienced a transplant so I'm not much help but until someone posts that has had, just wanted to let you know there is someone from the forum thinking about you and rooting for you.


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17

#3 snowbear


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Posted 07 May 2015 - 02:49 PM

Hi Brandon.  My youngest son's name is also Brandon.  J


I'm so sorry that you're having so much difficulty with your transplant.  Most of us, maybe even all of us, here in the CML group have not had a transplant since the TKI's seem to work so well most of the time.  You might get better answers to your questions in the transplant group.   It seems that once you've moved on to transplant, it doesn't matter which leukemia you have as the issues - graft failure, GVHD, relapse, etc. are the same for everyone.


Were you diagnosed in an advanced stage or did the meds just not work for you? 


I hope that whatever needs to happen will rid you of CML for good.  Best wishes.

#4 tadly


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Posted 07 May 2015 - 02:51 PM

Hi Brandon,


I had a bone marrow transplant but my 3 rounds of chemo and the transplant were for AML not CML.  It's been almost 3 years since for me.  My last test I was 90% donor and luckily still clearly in remission with normal blood counts.  


It must be disheartening what you found out today. But  I know of other people who've had successful 2nd transplants.  Like Snowbear wrote, you might get more replies about transplant experiences if you also post at the forum "Stem Cell Transplantation" here at LLS.


It sounds like the doctor was talking about just the infusion of more of your donor cells.  This is also called DLI (donor lymphocyte infusion). Please don't feel discouraged.  

#5 Trey


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Posted 07 May 2015 - 05:45 PM

As Tadly mentioned you want to find out if DLI is possible instead of starting over. 


Because your original leukemic cells appear to be reasserting themselves, and they carry the genetic instability which led to the original BMT, the docs will likely prefer to do another BMT.  Whether the Sprycel could control the leukemia longer term would not be knowable, so the Oncs would likely take a more cautious approach.  If you want to take the less cautious approach, you could ask the Oncs if you could continue with the higher dose Sprycel for a certain period of time to see how that goes, while also preparing in case another BMT is needed.  Maybe a DLI could be done in the meantime.  These would appear to be the other options available to you.  Of course, all have risks, including a second BMT.


CML is harder to eliminate by chemo and radiation than some other forms of leukemia.  That is because the leukemia starts at a higher level of stem cells than in other leukemias.  Often it is the graft vs leukemia effect which finishes the job of wiping out the former cells.  For you that apparently did not happen according to your Onc. 


I would feel the same way you do.  Given your young age the probability of success for a second BMT is higher than for older folks, but the risks and hardships are still non-trivial.  If it were me, I might be inclined to delay for a while to give my body time to rest and recouperate from the first BMT.  But it would be a tough call as to how to proceed.

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