RE: [CML] BMT Success Story - LONG

Wed, 26 Jan 2005 13:36:03 -0800

Hi Mike,
 
Thank you for your posts. Don't let this gang of red-neck anti BMT folk (including me) stop you from posting.
 
Your statement that a BMT is your best chance for a cure may be correct, but it is not the only cure. Many people on interferon have been cured from CML. For those patients who reach CCR on interferon and remain on interferon for a number of years and then stop taking interferon, 50% of the patients remain disease free and are considered cured.. 
 
The big problem with interferon are the nasty side effects that comes with the drug.
 
The only reason people are looking for the next trial of a miracle drug is because the current drug has failed them. The majority of CML patients are very happy having their CML treated as a chronic illness.
 
Zavie
 
ref: http://www.jco.org/cgi/content/abstract/20/1/214
 
 
-----Original Message-----
From: M [mailto:[EMAIL PROTECTED]
Sent: January 26, 2005 8:51 AM
To: [email protected]
Subject: Re: [CML] BMT Success Story - LONG

Well Rob.
 
There was no age limitation.  There was a hesitancy to give a first time early chronic stage patient STI 571.  THe trials were meant for more advanced cases.  Patients who had failed BMTs were bumped up.
 
Also, and I must be crazy....I wanted to go the more "curative" route than the treatment route.  Is Gleevac safe to take for 50+ years??  My doctor said...."we have no idea".
 
He did say that survival rates for a perfect match BMT in someone of my age(24) and relative early stage of CML was better than 50%.
 
I believed him.  THank God I did.  My point is that you should explore all your options.  If you do have a perfect 6/6 match...and you are in the early stages of CML..and you are young......A BMT is still your best chance of a "CURE" The long range side effects of Gleevac are unknown.  It just bothers me that people are only looking for the next trial of a miracle drug.  If you fit the profile...you should be looking for your perfect match donor.  I also fear that the Marrow registries will suffer due to these miracle drugs.  Thats a conversation for another time.
 
I stand by this.  Even though a severe majority of this group do not.  I will continue to be active on this site provided the "other" perspective!!!
 
MikeMike

Rob <[EMAIL PROTECTED]> wrote:
What was the age limitation for the CML trial that you were told? I don't recall the first trials having an age limitation like that, it seems like to be they were 18 and up possibly.
 
Rob
 
----- Original Message -----
From: M

 

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 ri ght 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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