Re: [CML] A BMT SUCCESS STORY - LONG :-)

Tue, 25 Jan 2005 12:57:42 -0800

Hey everybody.

 

My name is Mike.  You might have read some of my posts.  I am the "successful BMT Guy".

SOmetimes I feel like the only one! I never see posts from people like me.  I only hear about Gleevac and BMS trials.  Well here is my story!!

 

I am 29 years old.  Six years ago I had a routine blood test.  A few days later, while driving across Canada, my mom informed me there was a problem with my blood.  SHe had said that my WBC count was 86,000.  My GP (general doctor) is a hemotologist so he knew what that meant.  He wanted to send me for a second opinion just to be sure.  I had CML.

 

Wow. What the heck is that?? I said to myself.  Isoon found out.  At that time Gleevac was still STI 571 - an experimental drug.  It was only being prescribed to those at high risk or those that had already had a failed BMT.

 

My choice at that time was to go on Hydreurea which is used to keep WBC counts down.  I was in total denial.  I actually backpacked across Europe for a month with my Meds.  I actually left them in a hotel in ROME.  I was freaking out.  Luckily my bag was still there when I came back.

 

During this time, my family was given tests to see if they were matches for me.  I only have one sister and she was 2 out of 6. UGH.

 

The next step was to start the donor search.  I luckily lived in New York.  There were plenty of hospitals to choose from. My first hospital treated me horribly.  They handed me a book telling me about all the side effects of anti-CML drugs. This experience taught me that unless you believe 100% in your doctors...you are in trouble.

 

Then I heard that they were doing a trial for a miracle drug.....STI 571.  This took me to NY Weill Columbia on York avenue in Manhattan.  The decision to have treatment here saved my life.

 

When consulting with the doctors at NYP...they told me I was too young to get into the trial right now.  THey outlined the BMT process and urged me to start the search for an unrelated donor immediately.  At the time they would only do a BMT if the donor was 5 out os 6 or better. 

They provided me with emotional support during the donor search time.  That was the hardest part of the whole process.  Those 6 months between diagnosis and finding a donor really made me look inside myself.

 

Thank God I got the call.  They had found a perfect 6 out of 6 donor in London!!! They searched the international registry.  Barring the donors death before the BMT...I knew I was going to make it now.

I went into the hospital looking totally healthy.  If fact, on my first day of full body radiation the nurse said to me....WHere is the patient? I caught it so early. 

In April of 2000 my donor had roughly 15 bone marrow biopsies done to get the sufficient amount of marrow to transplant.  After the marrow was harvested, a doctor got on a plane from london...flew to New York...drove the hospital..handed the marrow to my doctors and left.

Then the marrow was carefully "blended" to certain specs.  It was then transfused to me at about 2am!!!

They gave me some cytoxin (chemo) and off I went.

 

My counts were taken down tonothing.  I had a WBC count of .00001.  If someone came into the hospital and sneezed...I would probably have died.

 

To make a long story shorter...I spent 7 weeks in the hospital. I left the hospital and I was confined to my house for 3 months....I had a home nurse come once a week for a year to give me Gammoglobulin drip.

 

Botttom Line...I was back to work in 1 1/2 years.

I am on no meds.  I have counts better than a "normal" person and I am almost to that 5 year mark.

 

There is so much more to my story.  I'd love to share it with anyone.  Ask me questions. Anything.  I want people to still realize there is another viable option to Gleevac or BMS trials.  Survival rates for perfect match BMTs are higher than ever. 

I AM A SURVIVOR!!   I FEEL "CURED"!!!

If you are thinking about a BMT please contact me.  I want you to have all the facts!

 

Look foward to hear from all of you!!!

 

Mike

BMT SURVIVOR!!!!


Pete <[EMAIL PROTECTED]> wrote:

Mike,

Would you please share the where, when, why, and how about your BMT?
It might give the rest of us on the fence of a possible BMT the
necessary hope that we need in such an uncertain decision.

Thanks,
Peter H.

--- In [email protected], M <[EMAIL PROTECTED]> wrote:
> Hello Diane
> 
> My name is MIke.  I had an unrelated BMT over 5 years ago.  I am
totally healthy...no meds...normal counts...normal life.
> 
> I would urge you to start the search for a donor immediately. 
There are medications that can be given to keep your counts down. 
Talk to your doctors.  The BMT option is not an easy one, but for me
it was the only one.  I did not want to take drugs the rest of my
life.  Don't be afraid!!!
> With the right doctors and the right attitude..this disease can be
beaten!!
> 
> I would love to talk to you more about this.  If you have any
questions...please e-mail me!
> 
> Mke





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