No CCR yet

[Guest guest]

Dear Carol,

Glad you posted Carol, because if you haven't heard it before, you should

know that one can live for a long time and not even be CCR. After 12 years and

7 different drugs to combat CML, I have never gotten to CCR, not even close. Do

not let that keep you from being positive, there are other people in this group

who are in the same situation. My counts are always low and below average.

Everyone is different and I have had doctors assure me that I would be CCR

in a month. It didn't happen, so I don't have any false expectations of when it

will - as it may never happen for me. When I did make a little progress

towards that goal, I would fall back to 100% Ph+. If Skip can live for 32+

years, I could be right behind him.

That goal may not be attainable for everyone, but we don't give up. I

spoke to someone last week who was a roomate of a man in the hospital and the

man was supposed to die, so he told the doctors he wanted to disconnect

everything and just let him go the natural way. That was over 10 years ago and

the man is still living. He watched funny movies and videos and laughed himself

well and today there is no sign of cancer anywhere in his body.

Do keep an open mind, read whatever is presented to you about CML and have

faith. I think Tracey answered your questions about the BMA, FISH, etc. I have

a BMA every 3 months and to date, it is about 44, so it hardly matters any more

how many I have had. It's like the difference between an x-ray and a MRI. The

BMA and BMB's can tell what is going on in your marrow and see if the disease

has progressed, that's how they know I am still in chronic stage. (The proof is

in the pudding.) Your husband is indeed very young to have CML, but sometimes

that can be a positive, as the drugs work better and faster on younger people

from what I have observed from postings and people I know personally.

Personally, I would ask that doctor more questions and ask why he does not

have BMA's. Dr. Druker's opinion was posted some months ago, but if you could

pull that up again, I would bring a copy to his doctor and perhaps get involved

in more dialog. If no one questions his methods, he will continue to practice

the same way and never progress from the point where he started.

There is continuing education at ASH and ASCO conventions, I would ask him

if he attends any of them. Your husband may be his only CML patient, so he will

have less experience and read less about CML than a specialist. Let's just say

that his doctor is a little less than orthodox in his methods. When you quote

something, they want to know where you got the information, so have a printed

back up, and more than one source if possible. You can write to either Carolyn

Blasdel Dr. Druker's nurse, or Dr. Druker himself and they will answer you, you

don't have to be his patient.

Blessings and much luck and keep digging up information, that is the only way to

get to the bottom,

Lottie