BMT donors and recipients: Introduce yourself...

Hello!  Welcome to the new Bone Marrow Transplant forum.  As a community leader here, I am so excited to see this forum brought to life.  I personally have not had to have a BMT, but as a lymphoma survivor, this is something I may have to face in the future.  I look forward to building a community where experienced and less experienced BMT donors and recipients can come together and exchange information and support.

I would like to invite you to reply to this post by introducing yourself and giving us a brief description of your BMT story.  For example: What was your diagnosis that lead you to have a BMT?  How long ago did you donate or become a recipient?  What kind of BMT did you have?  What is the state of your health today?  Feel free to include anything pertinent to your story.  

[blueytonie]

I  received  a BMT in 1991 from a donor(my sister) for AML.  I am currently 55 years old and in decent physical health.  I am active, have a physically demanding job and I embrace and live a holistic lifestyle.I did alot of work with the bodymind and emotional and spiritual cleansing.  This was my path to healing: health is personal and while I don't say this is for everyone I credit this work  with a large part ot my success in regaining health.  I take no drugs,nor have I in over 18 years. I have had symptoms of adrenal insufficiency but found herbs to be  extremely beneficial and take them when necessary. Some malabsorption still noted.
     If I were to do the recovery over again,the one thing I would change in  recovery is when starting to eat foods again is  to eat only whole healthy foods that are easlty digested and taking care of leaky gut from the chemotherapy early on.

[Mochadelicious]

Welcome blueytonie.  It's good to hear someone who has had a BMT so long ago and still doing so well.  It sounds like you've done a lot of good changes (emotionally and physically) since your ordeal.  I couldn't agree more that health is personal.  No one will fight more for your health than you.  

Did you have any complications from the BMT, life graft vs. host disease?  

[blueytonie]

No GvH altho within the six months or so I would have times of  such intense itching it felt like I had mange. Also had alot of other bizzare symptoms.   Started getting weaned from the steroids at about 6 months.

[Mochadelicious]

Good to hear.  I imagine the possibility of GVH was quite worrisome for you at the time.  I assume your AML has not returned and are now considered cured.  

[summerluvr]

Hi,  I am a 3 year survivor of Multiple Myeloma.  I am young for this diagnosis (early 30's).  I was very sick when diagnosed since it took so long for doctors to figure out what I had.  The symptoms were pointed to MS but the testing was negative so this really set me back (my age etc fit MS, no Myeloma!)

II responded well to a new targeted chemo called Velcade.  I had a stem cell transplant about 6 months after my diagnosis.  It was an Autologous Stem Cell transplant so I was my own donor.  I chose not to do maintenance chemo and have been in remission since my transplant (almost three years). Lately I have been sick a lot and have had fevers and other worrisome symptoms (nausea, weight loss) I go for my 3 month check up next Monday.  I am worried I am starting to relapse.  MM is treatable, but not considered curable so when they collected my stem cells they collected enough for two transplants.

[Rockroad]

Hi,

Diagnosed with T-Cell ALL Leukaemia in 2007 in my 30's.
Sibling donor BMT the same year.
Had some trials along the way back to health but going quite well now 6 years on. Off all drugs now but have some reasonably mild chronic GVHD to cope with on skin and lungs (plus I developed cataracts from the TBI and steroids).

Lost 25 kg during that year (85kg-60kg) and have only managed to put 15kg back on slowly over the years, but that is enough.

Very happy to have made it through.

[Mochadelicious]

Summerluv, just wondering how you're doing now?  You last mentioned having some symptoms and going to your doctor for a check up.  I hope all is well.

Rockroad, so are you considered cured of the Leukemia now?  Will the GVHD symptoms ever go away on their own?  I'm glad to hear you are doing well.

Your stories are truly inspirational, especially for those who are facing a SCT.  Thank you for sharing your stories.

[Rockroad]

Mochadelicious, I am told that after 5 years post BMT the chance of my getting Leukaemia again now is no greater than the chance that the general public has in getting it for the first time, so that is about as close to cured as you can get.

Due to the toxicity of the treatments however, I have higher risks of getting other cancers in the future. But there are no guarantees in life anyway.

Apparently chronic GVHD can reduce in the future for some people, but it may not. Had my second cataract replaced yesterday - getting used to my new eyes without glasses today.

[Mochadelicious]

That is wonderful news about your reduced chances of getting Leukemia again.  I can only imagine how scary it was to have gone through that, especially using a donor and not your own stem cells.  I know the risks are much greater using a donor, but on the flip side a greater chance for a cure.  May I ask how long you were in the hospital after the transplant and what kind of problems you encountered while there?

I'm so glad you are doing well now.  

[summerluvr]

Hi Mocha, thanks for asking,

I updated my post in the LL community. The short version is i am still maintaining my remission with no detectable M- Protien, :)  but have been diagnosed with Thyroiditis (inflamed thyroid) most like Hashimoto's disease. (underactive).

My thyroid was likely fried from chemo, but Hashi's is so common they can't really say for sure. I will take a thyroid issues over a  cancer relapse any day! I was delighted to hear that is what was causing my symptoms, and I left the appointment with another lust for life and  smile on my face!

Only a cancer survivor would know I'm talking about, most people would feel bad hearing the knews their thyroid is malfunctioning..lol!

[Mochadelicious]

Your remission is great news summerluvr.  Funny, I had thyroid issued as well.  They found part of my thyroid was enlarged when I was first diagnosed with lymphoma.  I ended up having it removed and biopsied last year (already in remission from lymphoma) and it ended up being a Goiter.  I could have had a needle biopsy, but after all I had already been through, I said take it out and really check it.  I don't trust needle biopsies anymore...not thorough enough in my opinion.

I know exactly what you mean when you say you left that appointment with a lust for life and a smile on your face.  I do that too every time I have my 6 month check-up with my oncologist (so far knock on wood).  You just don't appreciate your health until you're faced with your own mortality.  It's a wake-up call I appreciate but don't ever want to go through again.    

[Rockroad]

Hi Mocha,

After the transplant I expected to be in hospital for a month or more, but the graft worked well and the bloods counts came back up nicely so I was only there twenty days.

Main problem while in hospital was severe mucositis for a couple of weeks, meaning I had to be fed through a naso-gastric tube. But this is quite common for this kind of transplant, so it wasn't a surprise.

[Mochadelicious]

Wow, 20 days seems so short.  I thought most people were there for 2-3 months (at least in isolation).  Sounds like you had a few hurdles along the way, but for the most part nothing too serious.  

We don't have a lot of activity on this forum, but please feel free to stop by and help answer questions when you can.  Your first hand experience with SCT would be invaluable to those who are just starting the process.

[Rockroad]

WIll do.

Yes - it was quite short, another person I knew was in there for months and months