Re: BMT or BMS trial?

[Guest guest]

At 05:38 AM 3/17/05 +0000, Debra wrote:

> The onc there said absolutely

>no more Gleevec. And that my choices are maybe to get on the BMS

>study. Which will start mid april in St Louis. Or have a BMT which

>they are presently testing my siblings for a match. The Onc was

>unsure if i would qualify for the study because of a history of

>Breast Cancer 3 yrs ago. (lumpectomy only, no chemo or radiation).

Hi Debra,

This is one of those questions that no one can really answer for you....

partly because there is no 'right' answer. But you want to keep collecting

all the pieces of the puzzle, and keep assessing.

You don't mention how old you are....and that factors in. Also, you don't

know yet if you have a sibling match and this makes a pretty big difference

in a BMT. You are still collecting data for this decision....and there should

not be a rush to make a quick decision. Can't you be put on hydrea for the

present time?

I would consult at the BMT center when you know if you have a sibling match

or not....if you don't have a match, they can do a preliminary search to see

how many potential donors you might have. Sometimes finding an unrelated

match can take several months. Also the BMT center should have statistics

for your age and type of donor.....to give you some idea of success rate.

Regarding the liver problem, did you get a second opinion about this....from

another CML specialist. Maybe, depending on how high your liver enzymes

went (and were you being routinely monitored by a blood chemistry for this

problem? did it develop slowly over time or suddenly?)......maybe other

specialists would feel the same about never taking Gleevec again but I

would want to know. Dr. Druker would be a good 2nd opinion that your doctor

could get about this....I personally know a patient of his that went off IM

several times for elevated liver enzymes, eventually was treated with

prednisone and able to resume taking a therapeutic dose of IM.

And the next piece of the puzzle is to find out if you would qualify for a BMS

trial. Now that the trials are just starting up.....this should be pretty

easy to

determine from a BMS trial center....they have the protocols and patient

criteria.

When you truly know your options and circumstances (like the type of donor

for a BMT).......then you can assess the choices....but it does not seem

that you have the information that you need quite yet. Keep researching

to get this information.......I think that then you will be able to feel

that you

made a well informed and best choice. I hope others will also give you

some ideas.......most of us might have an idea what we would do ourselves

but that is not the same as saying what someone else should do.

Maui Nanc

[Guest guest]

Hey Debra....

You sound much stronger and much more clear about your situation

that when we spoke on the phone last week. Very glad to see that.

As far as your options are concerned, I think that C is right

on about getting all the facts first. I particularly agree with the

second opinion suggestion. A second opinion saved my life in the

past.

When we spoke, you wanted to know all about my BMT experience. I

stressed to you that I chose this route because both my research onc

and my transplant onc at MDACC concurred that my particular

situation: age, health, strength, sibling match, and a new BMT

protocol...made me an excellent candidate. I thought long and hard

about it while pressing both oncs about the new drugs coming down

the pike. After being assured that my chances of a good graft where

extremely high, and that the new drugs would still be available if

the BMT was to fail, I made my decision. It was a tough one to

make, but I felt and still do feel it was the right one for me in my

specific situation.

Get your options lined up, and please consider getting a second

opinion before making your decision.

Regards and Prayers

dt

>

> Hello, time to reintroduce myself. Debra here, following the crowd

> from Rob's group. Dx Feb.'03 with CML. Luckily found it in the

very

> earliest of possible stages. 3 mos of 400 Gleevec, then 3 mos of

> 600. Reached pcru. Stayed there for 6mos, had 1 yr anniversary BMB

> which showed still PCRU. 2 weeks later end up in hospital for 9

days

> with liver enzymes dangerously elevated. . Of course they yanked

the

> Gleevec and liver enzyme numbers proceeded to come back down. I go

> to Siteman Cancer Center in ST Louis. The onc there said

absolutely

> no more Gleevec. And that my choices are maybe to get on the BMS

> study. Which will start mid april in St Louis. Or have a BMT which

> they are presently testing my siblings for a match. The Onc was

> unsure if i would qualify for the study because of a history of

> Breast Cancer 3 yrs ago. (lumpectomy only, no chemo or

radiation).I

> am presently taking NOTHING . Which makes me nervous. But Onc

seems

> to think i'll hold remission on my own, for awhile. I am sceduled

> for a Fish test April 1st. And go back to StLouis to see Onc April

> 15th. He said we would decide our plan of action then. Based on

the

> numbers. I have studied and prayed for the correct decision. Any

> suggestions, thoughts or prayers would be appreciated. Thanks Debra

[Guest guest]

In , " leukeloo " wrote:

>

" ...in hospital for 9 days with liver enzymes dangerously elevated.

Of course they yanked the Gleevec and liver enzyme numbers proceeded

to come back down. "

Debra,

I don't know what your " dangerously elevated " liver enzyme numbers

were, but for what it's worth mine were ten times over normal when I

was first taken off Gleevec in May, 2001. I had been in the Stanford

STI/Gleevec trial since November, 2000 (diagnosed previous June), and

had just reached CCR. After trial and error, I restarted Gleevec at

100mg in August, 2001, when the liver enzymes had returned to normal,

at which time they elevated two fold in one week's time. After more

trial and error, I managed to take 100mg every other day and the

liver enzymes slowly returned to normal. Over a period of time, I

gradually increased the dosage (starting at 100mg daily, then 200mg,

and so forth) but it took until the following May, 2002, before I was

back on 400mg daily. But I've been on that dose ever since without

any recurrent elevation of liver enzymes and I've always remained in

CCR and have been PCRU for more than two years now.

And as Maui Nanc says, there have been patients with elevated liver

enzymes who have been able to resume Gleevec while adding

prednisone.

As I said, this may or may not be a piece for your puzzle.

B from California