Re:needing some answer

[Guest guest]

My first bmb was very abnormal. They even used the word bizarre. They concluded

that i had a possible atypical myeloplastic/myeloproliferative disorder. The

second said concusive with cml. I have had a great response at first but I have

been having the same severe headaches that sent me to the dictor. My wbc count

has been anywhere between 9 and 15. The last pcr was less than a half log

reduction. The bcr abl at diagnoisis said i was positive for b2a2 and e1a2. the

latter is not typical  cml from what i have read. THank you tracey for pointing

out the ASH guidelines. I live in west virginia and am really mad that I have to

fight for what should be standard care. I am 26 and have 2 daughters i want to

see grow up. Playing it safe is what I want to do. Thank amanda

[Guest guest]

>

> My first bmb was very abnormal. They even used the word bizarre. They

concluded that i had a possible atypical myeloplastic/myeloproliferative

disorder. The second said concusive with cml. I have had a great response at

first but I have been having the same severe headaches that sent me to the

dictor. My wbc count has been anywhere between 9 and 15. The last pcr was less

than a half log reduction. The bcr abl at diagnoisis said i was positive for

b2a2 and e1a2. the latter is not typical  cml from what i have read. THank you

tracey for pointing out the ASH guidelines. I live in west virginia and am

really mad that I have to fight for what should be standard care. I am 26 and

have 2 daughters i want to see grow up. Playing it safe is what I want to do.

Thank amanda

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Hi ,

It does sound like in your situation you do need to keep doing bmbs.

Did they tell you what % of cells were ph+ on the 2 bmbs that you have had done.

Usually they examine 20 cells if they can find 20 dividing cells to look at the

chromosomes.

I think in your case they are going to need to keep monitoring the status of

your bone marrow, to see if it is becoming more hypocellular or fibrotic.

Maybe you can contact your state medical association to ask if there are any cml

specialists available for you to see. Those who have an atypical situation such

as yours really do need to be seeing someone with as much experience as

possible....and also if there is not one in your state, then maybe they would

pay for an out of state consult? I think you will probably need to be very

pro-active to get the care that you need. For a lot of patients, just seeing a

local oncologist is not adequate. Another place to investigate is any medical

school that your state has....this can be a place where you can get cutting edge

evaluations and treatment. And the L & L Society does have some funds avaiable to

help with travel (I think limited to $150 annually now, but they have a 2nd

program for CML that you might qualify for).

I hope some of these ideas will help you.........

C.