Washington DC area CML docs

[Guest guest]

Hi.

We all have our own experiences with docs and sometimes there's really no good

answer for it but this is what I've experienced:

Bruce Cheson at town gave me the most painful BMB with lasting effects for

weeks when I was trying to get into the Sprycel trial. I know he is well known

and generally well-regarded so this may be an anomaly. But, after 3 BMBs with

greatly differing results over a two-month period he did not let me into the

trial. A week later I got into the trial at the University of land where

the BMB results were clear and I had gone from cytogenetic zero to 17 positive

cells in my marrow and the PCR and FISH results were high, too. Now, a few

months later I am zero cyto, zero FISH and 0.0003 PCR. Dr. Rapaport at

the Greenebaum Cancer Center in Baltimore at the University of land is my

doctor. He's a CML specialist with a full staff and is not only highly

competent but kind as well.

I also have gone to Dr. Victor Priego in Bethesda at the Blood Disorder and

Cancer Center. He's not a CML specialist but knows a LOT and is guided by a doc

at MDACC in Houston. It was Dr. Priego who did a FISH test and found that it

was 4% instead of zero and sounded the alarm that I must get into the dasatinib

trial. He helped as much as possible and is worth seeing.

Also, Dr, Carol was part of the early days of Gleevec and believes in it

to a fault. I saw her for about a year and she was so confident that my counts

were steady and the meds were working that she didn't see me for three months

even for a CBC. When I went in for my three month appointment my counts were so

low that I was immediately hospitalized and given a two-bag transfusion. That's

when I found Dr. Priego. However, she does indeed have an excellent reputation.

I am not trying to badmouth any of these doctors but as unusual as my

experiences might have been there have been two cases when my life was literally

in jeopardy.

Now I know much more and am a better patient than I used to be so I would never

let a doc wait three months for a CBC! And I wouldn't go back to a doctor for a

second and third BMB when the results were so questionable the first time around

which could have simply been bad lab work.

But, those are my experiences for what the information may be worth to anyone.

L