Re: to Cheryl and about Cheryl

[Guest guest]

,

If I were truly in blast crisis...

Then what, I should now be dead.

Why because.... You believe in medicine as a healer rather than God.

I have seen a many a miracle in my lifetime and Very much believe int he power

of God over mankind and medicine any day.

My platelets were in the millions.... I was fighting to stay conscious.

Whether or not you believe I was in Blast is immaterial to me.

From: hey00nanc <ncogan@...>

Sent: Sat, April 3, 2010 12:07:16 PM

Subject: [ ] to Cheryl and about Cheryl

Hi all,

Like Tracey said once before, I don't think all the second guessing on the list

is especially helpful to Cheryl? telling of your experience is fine, but not

questioning the information she has been given. Cheryl has seen the top cml

specialists in Canada....they are the Dr. Druker/Dr. Talpaz of Canada.

They are advising her according to conventional wisdom about cml once it has

reached blast crisis. You can get it to return to 2nd phase chronic, but it is

not considered to be long lasting. She is presently in a good level of

remission, which is where they want her to be before a transplant, for the best

possible outcome. At any time, her cml cells could bolt again and she could be

back in blast crisis, and her chances of a successful transplant outcome would

be seriously compromised.

During my time of having cml, I know at least 2 patients that that happened to.

Carol Hisatomi, a good friend who started a Gleevec trial with me, did

eventually go into blast crisis (she was not dx in blast crisis)..... she had

high dose chemotherapy which put her back in chronic phase, they proceeded with

making plans for a transplant at Duke and by the time she got there, she was

back in blast crisis and they could not even attempt the transplant and she

passed away. And I know of a young 12 year old that had the same situation.

So that is the gamble with Cheryl. No one can say for sure IF her remission on

Gleevec will last....and if you wait to see if it doesn't, then it could be TOO

late. Her doctor's can't guarantee her what will happen if she waits.....they

are taking what they think is the safest route, according to what is known about

blast crisis cml. The doctors will not risk her situation getting worse, where

she (statistically) would not survive a transplant. For the individual patient,

it is fine to make the decision to take that chance. This is a standard medical

approach.

For Anita, if you were truely in blast crisis, then your course of being

successful longer term with a TKI, is unusual....but it is not something that

Cheryl can count on happening (because it is not typical). I do have a question

for you about your dx in blast crisis....was this made by a cml specialist, and

what was it based on? You may have been in blast crisis but I don't think your

response has been typical?

The other thing that I think (maybe) favors Cheryl opting for a transplant (her

choice of course) is that her cml has NOT been well understood, it is not

typical, not following the usual patterns...which may make it more difficult to

treat. I do remember an early cml friend who Dr. Druker was treating and he

advised her to have a transplant for exactly that reason....she was not typical

and he could not be certain what would happen in the future. He was not willing

to guess and tell her she would be fine without a transplant.

Because of my medical background (30+ years) I try to look at this from a more

scientific point of view than an emotional one. I think Cheryl needs to keep

questioning the Canadian cml specialists that she is seeing and then make her

own " best " decision.

C.

[Guest guest]

>

> ,

> If I were truly in blast crisis...

> Then what, I should now be dead.

> Why because.... You believe in medicine as a healer rather than God.

> I have seen a many a miracle in my lifetime and Very much believe int he

power of God over mankind and medicine any day.

>

> My platelets were in the millions.... I was fighting to stay conscious.

> Whether or not you believe I was in Blast is immaterial to me.

____________________________

Anita,

I simply asked you what criteria your doctor used to say you were in blast

crisis? Dr. Druker, who is a cml specialist, has told me that sometimes when

he hears things that are not usual about cml, he does question what tests were

run, how accurate the tests were, etc. and that there are many lab errors.

I am not sure that high platelets is a criteria for the diagnosis of blast

crisis in cml???? what was your % of blast cells?

But I am sure you don't want to answer any questions....you would rather just

believe that you were in blast crisis and your survival is a miracle.........so

were you going to guarantee Cheryl a miracle if she went against her doctor's

advice about getting a transplant, as you suggested!

As far as what I believe and what I don't believe, you don't have a clue....so

don't speak for me.

C.

[Guest guest]

,

I have no clue what your problem is with me.

Have posted on here for three years and all of a sudden you want to question

what stage I was diagnosed in.

I had 60% blast

I have no problem answering your questions, you were rude and I was rude back.

From: hey00nanc <ncogan@...>

Sent: Mon, April 5, 2010 12:32:35 PM

Subject: [ ] Re: to Cheryl and about Cheryl

>

> ,

> If I were truly in blast crisis...

> Then what, I should now be dead.

> Why because.... You believe in medicine as a healer rather than God.

> I have seen a many a miracle in my lifetime and Very much believe int he

power of God over mankind and medicine any day.

>

> My platelets were in the millions.... I was fighting to stay conscious.

> Whether or not you believe I was in Blast is immaterial to me.

____________ _________ _______

Anita,

I simply asked you what criteria your doctor used to say you were in blast

crisis? Dr. Druker, who is a cml specialist, has told me that sometimes when

he hears things that are not usual about cml, he does question what tests were

run, how accurate the tests were, etc. and that there are many lab errors.

I am not sure that high platelets is a criteria for the diagnosis of blast

crisis in cml???? what was your % of blast cells?

But I am sure you don't want to answer any questions... .you would rather just

believe that you were in blast crisis and your survival is a miracle..... ....so

were you going to guarantee Cheryl a miracle if she went against her doctor's

advice about getting a transplant, as you suggested!

As far as what I believe and what I don't believe, you don't have a clue....so

don't speak for me.

C.

[Guest guest]

Anita

was only trying to help.

She was not questioning you.

I don't know either of you but I don't think this is the place for negative

posts

Sharon

_____

From: [mailto: ] On Behalf Of anita

Sent: Monday, April 05, 2010 6:10 PM

Subject: Re: [ ] Re: to Cheryl and about Cheryl

,

I have no clue what your problem is with me.

Have posted on here for three years and all of a sudden you want to question

what stage I was diagnosed in.

I had 60% blast

I have no problem answering your questions, you were rude and I was rude

back.

From: hey00nanc <ncoganuoregon (DOT) <mailto:ncogan%40uoregon.edu> edu>

groups (DOT) <mailto:%40> com

Sent: Mon, April 5, 2010 12:32:35 PM

Subject: [ ] Re: to Cheryl and about Cheryl

>

> ,

> If I were truly in blast crisis...

> Then what, I should now be dead.

> Why because.... You believe in medicine as a healer rather than God.

> I have seen a many a miracle in my lifetime and Very much believe int he

power of God over mankind and medicine any day.

>

> My platelets were in the millions.... I was fighting to stay conscious.

> Whether or not you believe I was in Blast is immaterial to me.

____________ _________ _______

Anita,

I simply asked you what criteria your doctor used to say you were in blast

crisis? Dr. Druker, who is a cml specialist, has told me that sometimes when

he hears things that are not usual about cml, he does question what tests

were run, how accurate the tests were, etc. and that there are many lab

errors.

I am not sure that high platelets is a criteria for the diagnosis of blast

crisis in cml???? what was your % of blast cells?

But I am sure you don't want to answer any questions... .you would rather

just believe that you were in blast crisis and your survival is a

miracle..... ....so were you going to guarantee Cheryl a miracle if she went

against her doctor's advice about getting a transplant, as you suggested!

As far as what I believe and what I don't believe, you don't have a

clue....so don't speak for me.

C.