Cheryl

[Guest guest]

Hi Cheryl

I come from Melbourne Australia.  I was diagnosed in 1992, had a bone marrow

transplant in 1993 and relapsed in 2004.  I'm not sure why your doctor would be

recommending transplant so soon.  If I were you I would give the drugs a chance

to work first.  Transplant is a difficult road, and not always a cure any way. 

There are so many drug options now, and you seem to be responding to drug

therapy quite well.  It took some time for me to gain remission again on Glivec

after i relapsed, but I have been undetectable now for about a year.  I take 600

mg of Glivec daily and have very few side effects, I'm 57 and would say I am

very lucky to have no ongoing problems from transplant.  If I can be of any help

email me or post questions on the site. 

Judy Telford

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[Guest guest]

Lottie...I'm glad it at least sounds like I'm grasping all of this, but in fact

it is quite a struggle some days...although I had hoped to be in chronic phase

and be able to better guarantee a longer response to the drugs - I guess I have

to play the hand that I've been dealt...my counsellor has said that everyone

knows that their ticket will be up one day - I just have my ticket in my hand

and now have to make a choice as to which " bus " I get on...and only I can make

that decision...for now the local Onc. and Dr. Lipton have both said that the

Gleevac is working and doing it's job, they just aren't sure how long that will

last, but they have said there are other drugs to try when and if Gleevac

fails...I just have to have faith that it will continue to do what it needs to

do - they have put me on the registry and will start the process of finding a

donor in case that becomes my option...

Cheryl

>

> Dear Cheryl,

> I think we now have a better picture of what you are facing from your

latest explanation and I must say that I am impressed with the way you are

managing and internalizing all of this information. For me, it took a while to

be able to process the information, but in my case, I didn't have a support

group or a CML specialist. If the truth be known, I didn't know there were

oncologists who specialized in CML, that's how informed I was. I knew next to

nothing and my doctor for reasons of his own kept me in the dark and always told

me how well I was doing. I didn't even know how to read the cbc's.

>

> After joining a support group, I got a real eye opener, that I was not doing

well, as I learned how to read my own cbc. I always want to know how and where

I stand, so it was very disturbing and disappointing to me when I realized I

had been led down the primrose path. I think everyone should have the benefit

of seeing a CML expert at least once to confirm or deny what their local

oncologist has told you if you decide to stick with him/her for treatment. Some

of our subscribers have found that their local oncologists are well informed and

are satisfied with their treatment, but sometimes we need to listen to our inner

voice. In light of your present circumstance, don't become your lesser self,

but stand strong and look to your higher self for your strength.

>

> You will find a lot of support here and we hope that whatever you choose to do

will be the right decision and it will be an informed one. Everyone here has

your best interest at heart, but in the end, the choice is yours. I send you

blessings and prayers that all will be done in accordance with the latest and

best medicine.

>

> Hands & hearts,

> Lottie Duthu

>

>