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Dear Hans,

I understand your anxiety about not getting better results, but that is not

at all unusual. Sometimes you need more of the med and time, have you been

tested to see how much you retain; sometimes you need more, sometimes less. I

would not be too quick to talk about BMT at this stage of the game. Are you

sure this is the way you want to proceed? Your friend may be an exception, but

a BMT requires a long recovery and there are many medical challenges after the

transplant you may not be aware of. I think you need more time to explore all

of the possibilities and other drugs.

Just to compare your results with mine, I offer you some of my story. I was

diagnosed at age 67 and have been CHR for over 14 years. Depending on what

trial I was in, my counts fluctuated and so did my Ph+. I have gotten only 50%

less phillies and am now 85% Ph+. I'm sure a lot of patients would not be happy

with that; but after 14 years hoping to become CCR, I have accepted that I may

never reach that point because when I was diagnosed, CML patients were told we

had 3 1/2 to 5 years life expectancy.

With the advent of Gleevec and other TKI's that changed the outlook

dramatically, we can now hope to live out a lifetime with a " chronic " disease.

Despite all of my trials and setbacks, I am still chronic and comparatively

stable, though my counts are suppressed.

The first four years after diagnosis, there was no CML specialist that I

conferred with. Through total ignorance, I stayed with my local oncologist, but

there was no real support. There was a lot of resistance from the staff to my

leaving and going to MDACC, and a resentment that still exists 10 years later.

Sometimes we have to make decisions that are unpopular, but you are the patient

and you call the shots. Now they can say that I am the only patient in their

history who has lived this long with CML. Is it something they did, I don't

think so. I believe it was because I was proactive and decided to move on and

that is what I contribute my longevity to and was willing to try new drugs that

were in trial.

Even though I dreaded being in Inteferon & HHT, I believe it is partially

responsible for me still being alive. I wish you all the best, I am sure you

will make the best decisions for yourself after you have had more time to

reflect on the alternative opportunities available.

My advice to you is to seek a second opinion and even more until you are

satisfied that you have met the doctor you are happy with and are convinced you

will be able to thrive under his/her care. I don't think there is anything

more important than having complete confidence in your doctor; it's all your

choice from here on.

A good choice was your decision to explore this web site. You will be welcomed

with open arms and open hearts. We offer information and support and hope you

will have the good fortune to succeed with your treatment so that we can extend

our hoorah's and blessings.

Hands & hearts,

Lottie Duthu