Hi Marty,
Wow, I had no idea you had gone through so much!  Cheers to you and may God 
bless you in all your ways!
Someday we'll get new bodies and be free!


Wishing you all your dreams and aspirations are fulfilled,
18's,
Susan





-----Original Message-----
From: Martin Gartenberg <[email protected]>
To: cmlhope <[email protected]>
Sent: Tue, Jul 26, 2011 2:57 pm
Subject: Re: [CMLHope] Transplants


Hi Karen,
 
Now I know why you are having problems because of the lack of a small amount of 
GVHD. Yes, you are correct about having a little GVHD to help against relapse.
 
I am sorry, I thought that it was you that was having kidney problems, but I'm 
glad that you don't have those problems. You have enough of your own problems 
without any more.  
 
I am just wondering how long was it until your donor cells depleated 
themselves? It is to bad that the donors lymphocytes didn't have enough time 
after you started depleating his cells.
Could it be a possability of them still being an option?
 
The Alemtuzumab (Campath) may be a problem if your also on high blood pressure 
meds. Hopefully, it will not be detrimetal to your kidney function. I am always 
looking at anything that can cause problems to my kidneys, and it seems that 
there are just to many things that do. 
 
I even stoped eating any red meat or any processed meats. I am basically on the 
Mediterranean diet now. 
 
I am trying to avoid as much proteins as I can without getting any more anemic 
then I am now. In fact, it is time to get another Procrit shot because I'm 
starting to feel like Crap right now. They usually last for about a month and a 
half, so I am actually overdo  a couple of weeks.
 
I just wanted to bring up spomething: When I had to have my spleen surgically 
removed one of my friends that also had CML had two failed transplants back to 
back, and he had both of them at Sloan Kettering who at the time only did T 
cell depleated bone marrow transplants. 
 
He was kind enough to visit me when I was in the hospital to cheer me up by 
telling me that his bone marrow transplant had worked. What I didn't know at 
the time was that they didn't work but he didn't want to tell me that at the 
time.
 
This was about a year or so after his transplant, but he was finally able to 
get a DLI and he was cured, but still didn't mention this to me. 
 
You see, that at the time I was also going to Sloan and I knew that I would be 
receiving a T cell depleated transplant, and when I finally found out that his 
two had failed I went to my Oncologist and asked him what I should do. 
 
At the time it was not known about T cells except that you won't get GVHD, and 
the way the transplant teem at Sloan was doing transplants they had no or 
little idea about the percent of relapse without T cells.
 
My oncologist had mentioned that there was no clear evidence if it would be 
better or not to have a T cell depleated transplant. I was devastated on which 
way I should go. I guess that my mind was made up when i spoke to another 
transplant teem at Mount Sinal Hospital in New York City.
 
They only did bone marrow transplants that contained T cells. Sloan kept giving 
me the run around. At first they said that I will have my transplant after all 
of my pre admission tests were done that would have been in a couple of weeks. 
This lasted almost one year so I decided to have my transpalnt at Mount Sinai. 
 
There were four patients that were in their own seperate LAF units, and I guess 
that GOD was with me because I was the only survivor.
 
So Karen that is my story, but it really beat me down until I just made up my 
mind to stick it out in that small plastic bubble for seven months... 
 
I wish you health and happiness and most of all 
 
18's
 
Marty
 
 
 



On Tue, Jul 26, 2011 at 12:42 PM,  <[email protected]> wrote:


Hi Marty,
 
I'm not sure why my name is showing up QTK98....that's my screen name, but my 
name is Karen and that's what you can call me.  In any event, I wanted to 
answer a few questions that you put out there with regards to my response on 
transplants.  My doctor and I did talk about doing a DLI, which is a donor 
lymphocytes infusion, however my donor cells depleted so quickly that by the 
time we actually realized it, another transplant was the better chance for a 
successful graft.  However, that did not happen.  We had enough frozen stem 
cells to do another transplant, so that is what we chose to do.  That answers 
your question...i.e., bone marrow or stem cells.  Both my transplants were 
non-myloablative stem cell transplants.
 
One of the conditioning drugs used in my second transplant was Campath, which 
did depleat my T-cells and that was the reason for all the problems with the 
virus and pneumonia post second transplant.  I had no GVHD after my first 
transplant, which probably was another sign that things were not going to work, 
since all the doctors I talk with say that a little GVHD is good.....it's the 
key to a successful graft.
 
I did not have a kidney transplant, in fact when I responded to Susan's post on 
transplants, I thought she was looking for people with CML who had transplants, 
however she wanted to see if anyone with CML had a kidney transplant.  In any 
event I am happy to say I have not had any other problems "organ" wise with 
this CML nightmare I've been dealing with over the last year, however the drug 
I'm on right now for the virus can cause significant problems with the kidneys, 
so I really pray that I don't encounter more problems thru this all.
 
It sounds like you have been thru alot, but I'm very happy to hear that your 
transplant has worked for 22+ years....and I'm sure you will see many more 
years to come.  I will check out the CML2 group and I wish for you 18's also.
 
Karen



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