Re: Bone Marrow Transfusion?

February 8, 2007

Laurie:

When I was diagnosed, my oncologist also recommended a BMT and I went to a

BMT center at Shands Hospital in Florida. The doctor there quoted BMT

statistics that were a 20% mortality rate if a BMT was done in the first year of

diagnosis, and up to 60% if done after that. We did the work up and it was

found that my brother was a match, to which he replied " How much do I get for

supplying you my bone marrow? I may want to put it up on E-Bay and see if I

can

get even more " . As he is an attorney, I was not sure if he was serious or

joking. (Maybe can answer that one.)

However, even the doctor, who specialized in BMT did not recommend BMT as a

front line therapy for CML. In fact, the recommendation she made was to stay

on Gleevec for as long as possible and then switch to other drugs in the

pipeline (at the time, neither was approved) like Sprycel and AMN107. She

stated that she doubted that anyone with CML should consider a BMT, as long as

these types of drugs were available to them and they were responding to them.

In fact, she further stated that she would not recommend and " elective BMT " as

the statistics supported medication was far safer and more effective than a

BMT.

Her finaly recommendation was for me to switch oncologists, because any

oncologist who recommended that a BMT was the first line of treatment for CML,

was not up on the latest treatments. I did switch and my current oncologist

requested that I go to MD to be evaluated and make sure I had access

to the latest treatments that were available.

That is just my experience. I hope it makes sense to you.

With hope,

Matt

ville, Florida

In a message dated 2/8/2007 1:25:50 PM Eastern Standard Time,

zmiller@... writes:

Hi Laurie,

Yes we have lots of opinions when it comes to doing a BMT. I have a huge

problem when it comes to going for a BMT this early in the game. As long as

you can live with the mortality statistics of the BMT procedure, then I

would go ahead and investigate it. 50% of bone marrow patients are dead

within 5 years. 10-20% don't make it past the first year. It is always a

good idea to have his siblings tested to see if they are a match.

There is no rush to do this. Wait and see how well he does on Gleevec and

then make the decision. Give it a year. With today's medication, very few

patients have to go to transplant.

My opinion is tainted because I lost several dear friends who were pushed

into doing a BMT.

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

PCRU 5/02 at RVH

2.8 log reduction Sep/05

3.0 log reduction Jan/06

e-mail: _zmiller@..._ (mailto:zmiller@...)

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

February 8, 2007

:

Since you are disabled, completely incompetent to practice law, why not make

it $20,000 and we will sue for treble damages and tortious interference.

Regardless, my brother is not going to have to give up his bone marrow any

time soon, although his first words to me when he found out that he was a match

was " Don't you wish you had been nicer to me growing up? " . You attorneys

are always working an angle, whether it is a jury or a blood relative.

Glad you agree with my assessment of the BMT. There is hope for you yet.

Matt

ville, Florida

In a message dated 2/8/2007 2:40:02 PM Eastern Standard Time,

deh12@... writes:

Dear Laurie,

I think that Shalyn, Zavie and Matt have given you very good advice,

with which I agree wholeheartedly. An oncologist who pushes for a

BMT a couple of weeks after diagnosis strikes me as being not very

current on what's going on with CML these days. I would suggest you

get a second opinion from someone with more experience.

As for your brother, Matt, I'm afraid he was dead serious. An

attorney has an ethical obligation to zealously represent his

client's interests. In this case, your brother is his own client,

so he has a legal duty to maximize the financial return on his bone

marrow investment. Anything less would pose a grave risk of

sanctions by the statewide bar grievance committee. I would

strongly advise you that, in all further negotiations with your

brother, you should be represented by independent counsel of your

own. Now, I'm not licensed in Florida, but that wouldn't matter if

we're just negotiating a business transaction. (If it later

resulted in litigation, we'd have to retain local counsel.) So just

say the word and I'll drop a retainer letter in the mail. My normal

fee would be $10,000, but since I'm disabled and completely

incompetent to practice law, I'll only charge you $5,000. : )

Warm regards.

February 8, 2007

Hi Laurie,

I am sorry to hear of your husband's new diagnosis but there is a lot

of good info out there. Yes, I think a consult at MD is the

best approach.

Gleevec is the first and best line of defense. It has 5+ years of

tracking and as changed the face of CML. Prior to gleevec, the

prognosis without a bone marrow transplant was very poor. And with a

bone marrow transplant, the risks were high. I have a cousin and a

friend who both had CML prior to gleevec - one had no donor and passed

away - one who had a donor but passed away from graft VS host at the

age of 22. Bone marrow transplant should not be presented as the best

approach to CML with all the new treatments available. Gleevec being

one- but with many more on the horizon some of which are already

approved and used and some which are on the cusp. What was your

husband's WBC when diagnosed? Generally when diagnosed in chronic

phase 400 mgs is the recommended dose (anyone correct me if this is

wrong)

We were also told the same thing by a dr when my husband was diagnosed

- he is 32 and healthy and his CML is rare and to get a bone marrow

transplant. Well we opted to not and continue on gleevec and he is

great - blood counts are way down, and awaiting his results from his

first 3 month test. As far as we are dealing with CML - we are calling

it a condition and managing it as such...as you said like diabetes or

any other chronic condition. Our last reort would be a bone marrow

transplant. There are more people on this list who have some really

good info regarding bone marrow transplant stories- but as I said

nothing to be taken lightly. Hope this helps!

Shalyn

" Catch on fire with enthusiasm and people will come for miles to watch you

burn. " - Wesley

February 8, 2007