Re: New member!--

[Guest guest]

She is most likely going to persue a bone marrow transplant because she doesn't

want to be taking the Gleevic the rest of her live. >

>

**********************************************

Hi ,

I'm curious to know if your daughter has actually found a doctor who is willing

to do a transplant for her considering that the Gleevec is working well for her?

I personally don't know of any doctor who would agree to it as the death rate

for transplants is significantly higher than the death rate for Gleevec users.

I can't urge you enough to consult with an expert if she insists on taking this

route and by expert I mean a CML expert, not a transplant expert.

Best of luck,

Tracey

[Guest guest]

Must say I had the same reaction. A BMT is quite an undertaking. Folks in my

support group who have gone through it say they wish Gleevec was around at the

time.

It's great news that she is doing so well. All the best to you both.

in San Francisco.

From: traceyincanada@...

Date: Mon, 2 Nov 2009 18:19:38 +0000

Subject: [ ] Re: New member!--

--- In , " duane36_1999 " <duane36_1999@...>

wrote:

She is most likely going to persue a bone marrow transplant because she doesn't

want to be taking the Gleevic the rest of her live. >

>

**********************************************

Hi ,

I'm curious to know if your daughter has actually found a doctor who is willing

to do a transplant for her considering that the Gleevec is working well for her?

I personally don't know of any doctor who would agree to it as the death rate

for transplants is significantly higher than the death rate for Gleevec users.

I can't urge you enough to consult with an expert if she insists on taking this

route and by expert I mean a CML expert, not a transplant expert.

Best of luck,

Tracey

_________________________________________________________________

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[Guest guest]

Hi , taking Gleevec, or another CML drug, for the rest of one's life, is no

different than taking high blood pressure pills everyday, or taking cholesterol

medicine every day.  I am taking one now that has no side effects at all, true

it is still in trial, but it is looking pretty  good.  I would think a doctor

would only suggest a transplant if all esle failed, especially today with all

the wonderful new drugs that we have.  It was only a few years ago, before

Gleevec, that we had to take Interferon, now there was a drug to run from!  And

life expectancy was 5 years!  Tody with Gleevec, Sprycel, Tasigna and more being

trialed, Interferon is a thing of the past, and so will transplants be. , and

now there is no limit as to how long we will live.   I wish your daughter the

very best, and suggest she make an appointment with Dr. Druker at OHSU, or Dr.

Moshe Talpaz at U. of Mich for the very best advice.

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 trial/U of

Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR

0.017

04/13/09 - Ariad trial at U. of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial, U. of Michigan

09/08/09 - PCR 0.017

From: traceyincanada <traceyincanada@...>

Subject: [ ] Re: New member!--

Date: Monday, November 2, 2009, 1:19 PM

 

She is most likely going to persue a bone marrow transplant because she doesn't

want to be taking the Gleevic the rest of her live. >

>

************ ********* ********* ********* *******

Hi ,

I'm curious to know if your daughter has actually found a doctor who is willing

to do a transplant for her considering that the Gleevec is working well for her?

I personally don't know of any doctor who would agree to it as the death rate

for transplants is significantly higher than the death rate for Gleevec users.

I can't urge you enough to consult with an expert if she insists on taking this

route and by expert I mean a CML expert, not a transplant expert.

Best of luck,

Tracey

[Guest guest]

Jumping in here to reiterate what others have said. Another specialist to

consider (that is closer since your daughter is being treated at Stanford) is

Dr. Neil Shah at UCSF...

I sincerely hope your daughter continues to do well on the Gleevec and has no

need to look at the other options for CML treatment.

Beth

[ ] Re: New member!--

Date: Monday, November 2, 2009, 1:19 PM

 

She is most likely going to persue a bone marrow transplant because she doesn't

want to be taking the Gleevic the rest of her live. >

>

************ ********* ********* ********* *******

Hi ,

I'm curious to know if your daughter has actually found a doctor who is willing

to do a transplant for her considering that the Gleevec is working well for her?

I personally don't know of any doctor who would agree to it as the death rate

for transplants is significantly higher than the death rate for Gleevec users.

I can't urge you enough to consult with an expert if she insists on taking this

route and by expert I mean a CML expert, not a transplant expert.

Best of luck,

Tracey

[Guest guest]

Hello everyone,

I am so glad I made that post yesterday. I wasn't looking for a response at

all. I was just trying to let someone else know what my family went through/is

going through. 's doctor seems to be taking a stalling tactic hoping

will change her mind rather than refusing the BMT. has already

had at least one consultation with a BMT team. I will surely send all of your

replies to her and try to convince her to let the Gleevic do its thing. I have

already tried convincing her to stay on the Gleevic, but not with much luck.

Maybe after she sees everyone elses posts she will reconsider.

Thanks alot to everyone for your concerns and very helpful advice.

>

> She is most likely going to persue a bone marrow transplant because she

doesn't want to be taking the Gleevic the rest of her live. >

>

> >

>

> ************ ********* ********* ********* *******

>

> Hi ,

>

> I'm curious to know if your daughter has actually found a doctor who is

willing to do a transplant for her considering that the Gleevec is working well

for her? I personally don't know of any doctor who would agree to it as the

death rate for transplants is significantly higher than the death rate for

Gleevec users.

>

> I can't urge you enough to consult with an expert if she insists on taking

this route and by expert I mean a CML expert, not a transplant expert.

>

> Best of luck,

>

> Tracey

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

-- Please remind the docs that just like they said in Jurassic Park--- " Just

because you can do something - doesn't mean that you should. "   BMT is usually

reserved  to save peoples lives when there is no other hope, because it has it's

own risks involved.  You said she has two matches that is wonderful ---they will

be there if needed.  But there are so many other therapies to use - before

looking for a last resort.  The magic of the new medications is that it is

changing the face of  CML from a killer into more of  a chronic disease -much

like diabetes and asthma- able to be managed medically- yes people do still die

from those diseases but not as many.   Before agreeing to the BMT-please email

Dr. Druker's office. 

I have just been trained to conduct bone marrow drives- I believe in them and

they do save some  people's lives for more than 70 different illnesses. But it

is not a procedure to take lightly.  If the bone marrow transplant fails- there

is a very short period of time before death.  One of my co-worker's nephews had

a BMT - fought Host vs Graft then did well but then caught swine flu and died

because of his immune system.   If it is your only option of course - try

everything but it sounds like she is responding to Gleevec and there are 2nd and

3rd generation drugs still in the chute.  And beyond them drugs still in clincal

trials.

Knowledge is power.  Best wishes to you.

________________________________

From: duane36_1999 <duane36_1999@...>

Sent: Tue, November 3, 2009 5:34:29 AM

Subject: [ ] Re: New member!--

 

Hello everyone,

I am so glad I made that post yesterday. I wasn't looking for a response at all.

I was just trying to let someone else know what my family went through/is going

through. 's doctor seems to be taking a stalling tactic hoping

will change her mind rather than refusing the BMT. has already had at

least one consultation with a BMT team. I will surely send all of your replies

to her and try to convince her to let the Gleevic do its thing. I have already

tried convincing her to stay on the Gleevic, but not with much luck. Maybe after

she sees everyone elses posts she will reconsider.

Thanks alot to everyone for your concerns and very helpful advice.

>

> She is most likely going to persue a bone marrow transplant because she

doesn't want to be taking the Gleevic the rest of her live. >

>

> >

>

> ************ ********* ********* ********* *******

>

> Hi ,

>

> I'm curious to know if your daughter has actually found a doctor who is

willing to do a transplant for her considering that the Gleevec is working well

for her? I personally don't know of any doctor who would agree to it as the

death rate for transplants is significantly higher than the death rate for

Gleevec users.

>

> I can't urge you enough to consult with an expert if she insists on taking

this route and by expert I mean a CML expert, not a transplant expert.

>

> Best of luck,

>

> Tracey

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Dear : As you can see there are so many people fighting with you for

to make the right choice. I am not young like , but when I was

diagnosed back in 1998 and I was all set to go for a BMT with a UNRELATED DONOR.

That would have been a catastrophe for me, and I know I would not be here to

write this note to you now.

Its not the transplant itself, its the Graft Vs. Host thats the problem.

Your immune system is totally destroyed to have a transplant done, and I have

heard of so many who have not survived due to their immune system and getting

things like Pneumonia or the FLu. It was not the Leukemia that killed them.

Someone said to you that if she has related donors, they will be there to help

her in the future should she have to get the transplant. Please tell her that

if she is doing so good, let the Gleevec do its job. We are monitored and

checked constantly to see if there are any changes that require a change in

medication etc.

I am Thanking God that this Christmas will be my 11th Christmas since I was

diagnosed, and I never believed I would see Christmas # 2 at that time.

God Bless and all her Loved Ones.

Sue

> >

> > She is most likely going to persue a bone marrow transplant because she

doesn't want to be taking the Gleevic the rest of her live. >

> >

> > >

> >

> > ************ ********* ********* ********* *******

> >

> > Hi ,

> >

> > I'm curious to know if your daughter has actually found a doctor who is

willing to do a transplant for her considering that the Gleevec is working well

for her? I personally don't know of any doctor who would agree to it as the

death rate for transplants is significantly higher than the death rate for

Gleevec users.

> >

> > I can't urge you enough to consult with an expert if she insists on taking

this route and by expert I mean a CML expert, not a transplant expert.

> >

> > Best of luck,

> >

> > Tracey

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >