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Cll - Bone Marrow Transplant

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megjobethamy
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Subject: cll - bone marrow transplant
Date: 09/25/2007

My brother has CLL.  His situation was monitored for approx. 4 years, but when his red blood cell count went down, while his white cell count was going sky-high, he began chemo.  He was told it would be 2-6 months of chemo and then they'd see what happens.  He responded well to chemo, having it 3 days/month for the last 4 months.  The only side effect has been a sensitivity to cold right after the treatment.

Now his dr. is proposing a bone marrow treatment (no outside doner being used), but the possible effects sound frightening, compared to the virtually no effect he's had with the chemo.  It's being presented to him as elective, and that his PPO will cover it (we haven't heard from the insurance co. yet.). 

Is there anyone out there that regrets doing the bone marrow transplant?  Are there people out there who feel it saved their lives?  If he says no to this treatment, can he just continue with the chemo and still get better?   Anything you can share in the way of "real life" situations will be very appreciated.  I really love my brother.  thanks

 

Subject: RE: cll - bone marrow transplant
Date: 06/13/2008

I have been treated for CLL back in 2003 and have been in remission going on 5 years now.  I feel pretty good now and resumed a somewhat normal life despite other medical problems.

I suppose the only way to go at this is to be brutally honest.  CLL is incurable as of right now.  A BMT is the only possibility for a cure and the odds would not be in your brother's favor.  Generally some of today's chemo regimens can achieve BMT lengthy remissions as in my case.  But it too has a cost associated with it.  I had FCR (fludara, cytoxan, rituxin).  This is considered in the US to be the first line regimen for treatment.  Fludara can and will cause immunosuppression for as much as a year after treatment has stopped.  Cytoxan (also known as cyclophosphamide) if I am not mistaken has been linked to secondary cancers.  So as I said there is a price to pay no matter what he does.

I wish you and your brother all the best moving forward.

Regards,

Loren

http://www.cllcfriends.com

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