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 Bone Marrow Transplant 
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Post Bone Marrow Transplant
It is me again....seems I am full of questions this week. My sister is fighting cancer. They told her yesterday that they are contemplating a bone marrow transplant. I am a match since we are siblings. I really want to do this for her; however, one of the nurses told her that since I have Fibromyalgia I probably will not be considered. Is this true? I can't see how it would make a difference unless Fibro is classified as an auto-immune disease. I have read in one area that it is and in another that it is not. Does anyone know anything about this?

Of course I will consult the doctor, but I will not see him for a week or so and am curious.

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Fri Oct 28, 2011 9:17 am
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Post Re: Bone Marrow Transplant
I'm sorry about your sister. :hug

Fist off, that nurse had no business offering her opinion on something so critical as a bone marrow transplant and needed to keep her mouth closed. The doctor should explain everything unless he has expressed his desire for the nurse to communicate these things with your sister. Otherwise....OK I'll stop here.

Also, FM so far is not autoimmune. However, some of us think it's possible we may find out down the road that FM is autoimmune. No one knows yet. The research hasn't developed enough yet.

Barbara will probably direct you to past articles that will clear things up. :thumbsup


Fri Oct 28, 2011 9:39 am
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Post Re: Bone Marrow Transplant
Thanks for the info. AND I agree...the nurse was out of place.

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•Some people travel in their mind, some people travel in their heart, and some people actually go somewhere.


Fri Oct 28, 2011 10:33 am
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Post Re: Bone Marrow Transplant
i send you my prayers and wishes to you at this most difficult
time in your lives.. xoxoxo susie


Fri Oct 28, 2011 10:49 am
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Post Re: Bone Marrow Transplant
i am sorry your sister is ill. Here is an article explaining the types of bone transplant and exactly what marrow is: http://rarediseases.about.com/od/raredi ... /bmt05.htm

I am sorry but I don't think the nurse was out of line at all. She works with cancer patients constantly. The only thing she was saying as far as I can tell is not to be disappointed if you weren't a good match. Being a sibling does not always make you the best match. Especially where you have a chronic illness that affects your blood stream possibly.

Besides making sure your sisters body accepts your marrow; they want to make sure it won't make your condition worse.

God bless you and know our thoughts and prayers are with you both.

Bonnie


Fri Oct 28, 2011 1:27 pm
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Post Re: Bone Marrow Transplant
Hi J-

I'm so sorry your sister is going through all of this right now. The Leukemia and Lymphoma Society website has a forum for people going through this -- and for those who love them. There is a whole section about Stem Cell Transplants, or SCT, what used to be called Bone Marrow Transplants. When I was going through some stuff, they were very helpful and supportive.

Within the last year, "Be the Match" (the major bone marrow donor registry in the country) has added FMS (among other disorders that are common comorbidities with FMS) to the list of disorders that will preclude you from being a donor. I've been on the registry for years and I'm totally bummed about not being able to continue (especially, as I was after my previous dx).

Here are a couple of links I found on the marrow.org website:
Medical Guidelines: When You Match a Patient
Medical guidelines that apply when a donor is a possible match for a patient
URL: http://marrow.org/ContentNarrow.aspx?id ... bromyalgia
August 25, 2011

Medical Guidelines for Joining the Registry
Medical guidelines for joining the Be The Match Registry as a bone marrow donor.
URL: http://marrow.org/ContentNarrow.aspx?id ... bromyalgia
July 29, 2011

Hope everything works out with your sister and please keep us posted. :pray :group

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Sat Oct 29, 2011 3:06 am
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Post Re: Bone Marrow Transplant
Hi again, J --

I'm back...

On a hunch, I thought I'd look at City of Hope's website (because I know several people with Leukemias and Lymphomas who were treated there), searching for fibromyalgia and STCs and I found the following link:
http://www.cityofhope.org/about/publica ... algia.aspx

Here's an excerpt from the article:

Quote:
Researchers led at City of Hope by John Shively, Ph.D., chair of the Department of Immunology, and Steve Sommer, M.D., Ph.D., believe they have found a link between fibromyalgia and a gene involved with inflammatory response. They published their findings in the December 30, 2009, issue of PLoS ONE.

The gene, called MEFV, provides the coding for a protein found in certain white blood cells that play a role in inflammation. Scientists know that mutations in MEFV are associated with another disease called familial Mediterranean fever, which causes fever along with severe pain in the abdomen and joints and, in some cases, inflammation of the lung and heart linings. It sometimes can lead to kidney failure, arthritis and other disorders.


I'm wondering if the fact that MEFV is involved in the production of some WBCs might be part of the ban on FMS patients being bone marrow donors.

Hang in there! :console

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Sat Oct 29, 2011 3:34 am
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Post Re: Bone Marrow Transplant
Yeah, to me it just sounds like the nurse was giving her opinion and trying to be helpful. She wasn't pretending to be a doctor, just talking to you afterall. They know that you are going to take your docs opinion to be the most significant. You should ask your doc for his opinion and they can weigh the risks as they do with every procedure.

Have you been tested to be a match?


Sat Oct 29, 2011 5:20 pm
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Post Re: Bone Marrow Transplant
Thank you everyone for all of the helpful info. I have not yet been tested because my sister is looking into other options as well...like a stem cell transplant which she would use her own stem cells. After further investigation with my doctor, it is very unlikely that I will be able to be a doner. It is good that their are other options availabe.

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•Some people travel in their mind, some people travel in their heart, and some people actually go somewhere.


Mon Oct 31, 2011 10:58 am
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