Re: danger numbers? MF and CML

[Guest guest]

Hi Annette,

Welcome to the group. I'll assume that you have myelofibrosis which is the MF

that you refer to?

I'm curious though as to how the diagnosis came? Myelofibrosis can look a lot

like CML so what made the doctor give you both diagnosis as opposed to saying

you had CML first with a progression of myelofribrosis later? Before we had

Gleevec and the other drugs, CML often lead to myelofibrosis.

I would encourage you to try one of the other drugs for CML if you find Gleevec

hard to tolerate. The CML is likely causing your white count to rise and is far

easier to control than myelofibrosis.

Have you seen a blood expert? Both diseases can be tricky to monitor and treat.

You really need to have someone who knows what they're doing.

There are a few new trials for MF that are showing great promise and that may be

of benefit to you. You need a doctor who is up to date on the new treatments.

Tracey

>

> I have not written before. I am member of MF support group since 98. I have

not been able to really look at CML since dx 08. I have double dx.

> Question: So when you have the BCL Abl test, what is considered high?

dangerous? deadly? How high have you gone? I know normal people would be " o " .

> I took Gleevec for last two years and have given up on it because of side

effects not being tolerable, but hometown doc is pushing me to do something! I

do take hydrea because of high white count with MF and having spleen removed. I

would appreciate your thoughts.

> Annette Livingston, 67 yrs old MF and CML double dx, HYDREA 500.

>

[Guest guest]

Question: So when you have the BCL Abl test, what is considered high?

dangerous? deadly? How high have you gone?

I was dxed Myelofibrosis 11/98 and in 10/2008 dxed also with CML as double

dx. I have been on trials for MF and have a good hematologist.