Re: Eeeek!

[Guest guest]

Hello Jane

I have been wondering what was going on with you and hoping you were

doing ok. Sorry about your low energy level. I see it in

too and it looks very frustrating.

Have you found the Asia group of CML'ers? That group is very

active and has SUCH good information posted to it on a daily basis.

I would post this question there too, if I were you.

My opinion? There are a good few really great options after gleevec

before going to a transplant and I am not even sure that going to

transplant is in the pipeline for everyone at all anymore. I don't

think so. I know each person's road will be different, but don't be

afraid to get a second opinion.

How is your winter going there? It's very hot here today. Oh yes,

I got it wrong last time - the caravan park should be on the right

side of the road, not the left going into Stellenbosch! LOL. I

always get mixed up between my left and right

Take care Jane

Love

Annie

(mom of )

www.livingwithcml.blogspot.com

>

> Hi all

> Not been posting but I have been lurking. Battling with energy

> levels at the moment.

> Now I feel a bit rattled after a discussion with my oncologist so

I

> thought I would reach out to the people who know...i.e. you guys!

>

> I had a bone marrow biopsy on Monday this week and preliminary

> results indicate that there are still abnormal cells athough the

> levels have improved. I don't have the figures yet but I have

just

> talked to my oncologist who seems to feel that this is an

indication

> that the Gleevec(400mg) is not working. She seems disinclied to

> consider a higher dosage and wants me to go and see the

> haemotologist with a view to preparing for Bone Marrow transplant.

>

> I did indicate to her that my contact with other CML patients all

> over the world has lead me to understand that there are many steps

> which can be tried before the transplant option but she did not

seem

> convinced. She was at pains to remind me that Gleevec is not

> the " be all and end all " and that I needed to be careful about

> thinking this way because ultimately I will need to go the

> transplant route in any case.

>

> What do you think?

>

> Jane

>

[Guest guest]

Jane,

How long have you been in treatment? Have you consulted with one of the

experts at MDACC or OHSU? If, not, run, don't walk to see them before doing a

transplant. You do have other options. first the is an increase in Gleevec,

the the BMS drug is suppose to be approved on the 28 of June. First see what

the trend is in your results. You can lways have them rechecked at one of the

large centers that do a lot of testing for CML. If you need phone numbers, I'm

sure that we can all help you get to the right people.

regentmahogany <merlinh@...> wrote:

Hi all

Not been posting but I have been lurking. Battling with energy

levels at the moment.

Now I feel a bit rattled after a discussion with my oncologist so I

thought I would reach out to the people who know...i.e. you guys!

I had a bone marrow biopsy on Monday this week and preliminary

results indicate that there are still abnormal cells athough the

levels have improved. I don't have the figures yet but I have just

talked to my oncologist who seems to feel that this is an indication

that the Gleevec(400mg) is not working. She seems disinclied to

consider a higher dosage and wants me to go and see the

haemotologist with a view to preparing for Bone Marrow transplant.

I did indicate to her that my contact with other CML patients all

over the world has lead me to understand that there are many steps

which can be tried before the transplant option but she did not seem

convinced. She was at pains to remind me that Gleevec is not

the " be all and end all " and that I needed to be careful about

thinking this way because ultimately I will need to go the

transplant route in any case.

What do you think?

Jane

---------------------------------

Sports Fantasy Football ’06 - Go with the leader. Start your league

today!

[Guest guest]

Hello Jane

When did you get DX? My name is and I am 25years,

I was DX in 2003. I only got in remission in December of last year,

it took over 2 years. There was a time where my doctors where

pushing me to transplant. Now they say I should stay on Gleevec and

see how it goes. My first doctor always told me that there was a

risk with Gleevec but the risks of transplant were higher. I have

gone to many different doctors for lots of options; I did not stick

with one. Every doctor is different one told me life was a gamble, I

need to transplant and see what happened. The worst that can happen

was death or I can be cured. He said that it was a gamble to take. I

told him I only gamble at Casino's and not with my life. . The way I

see it is that as long as your cells are improving that is a good

sign. That is just the way I see it. I just want to live my life

one day to another I am against transplant but if the time comes and

if it is needed I will do it, but until then and as I keep improving

I am staying on Gleevec My energy levels are some days better then

others, but I can't let that stop me. I am getting married in 5

weeks so that can also be helping me with my energy levels.

>

> Hi all

> Not been posting but I have been lurking. Battling with energy

> levels at the moment.

> Now I feel a bit rattled after a discussion with my oncologist so

I

> thought I would reach out to the people who know...i.e. you guys!

>

> I had a bone marrow biopsy on Monday this week and preliminary

> results indicate that there are still abnormal cells athough the

> levels have improved. I don't have the figures yet but I have

just

> talked to my oncologist who seems to feel that this is an

indication

> that the Gleevec(400mg) is not working. She seems disinclied to

> consider a higher dosage and wants me to go and see the

> haemotologist with a view to preparing for Bone Marrow transplant.

>

> I did indicate to her that my contact with other CML patients all

> over the world has lead me to understand that there are many steps

> which can be tried before the transplant option but she did not

seem

> convinced. She was at pains to remind me that Gleevec is not

> the " be all and end all " and that I needed to be careful about

> thinking this way because ultimately I will need to go the

> transplant route in any case.

>

> What do you think?

>

> Jane

>

[Guest guest]

At 03:52 PM 6/22/06 +0000, you wrote:

>I had a bone marrow biopsy on Monday this week and preliminary

>results indicate that there are still abnormal cells athough the

>levels have improved. I don't have the figures yet but I have just

>talked to my oncologist who seems to feel that this is an indication

>that the Gleevec(400mg) is not working. She seems disinclied to

>consider a higher dosage and wants me to go and see the

>haemotologist with a view to preparing for Bone Marrow transplant.

Hi Jane,

You have a doctor who is NOT well versed about treatment with Gleevec and

is mostly likely biased toward a BMT and that is not likely to change!

First of all, you need complete records for yourself....and you are

entitled to them, you paid for the testing I assume (or maybe you have

govt. medical care). You need to track your own response to Gleevec....when

did you start and what have the test results been along the way? Not

everyone responds as quickly to Gleevec, but if you are getting a reduction

in your ph+ cells, then the drug IS working!

Unless you are under 20, with a sibling match....or maybe

20-30.........there is NO reason to jump into a transplant....unless that

is your choice. Maybe you can get a transcript of one of the latest

teleconferences to take to your doctor, explaining current thinking about

CML treatment..........but my guess is that she is NOT interested. I would

do anything to find another oncologist if I were in your shoes.

C.