Re: First BMB in 1 1/2 years-&all

June 29, 2005

Hi ,

I am so sorry to hear that you have some interphase cells show up. I

I hope they are passing cells that we can get sometimes! Boy, since

you have moved you certaintly have had a lot on your plate.

Once again I asked Dr Sawyers if I should do a BMB (I just saw him

in April) I had the UCLA PCR done then along with FISH and

everything else, but he says no need to do a BMB. I guess I could

insist and have one of the local oncs do one, but he says as long as

the PB looks good no need to do it. Haven't had but 2 since dx (dx

in Jan 2002)...I do continue to be PCRU. Dr Sawyers told me to just

go on and live a good life and not to worry about this......he says

there is no guarentee that anyone will stay PCRU and it's important

to enjoy life and swallow the Gleevec everyday...so that's what I

have been working on....enjoying my life....taking hold of it and

living once again! I will keep asking him every time I see him

about doing a BMB though....

Still battle that fatigue!...big time!

xxx in Ca

> >Hi All,

> >

> >Since I got word 2 weeks ago that I had 3 interphase cells in my

FISH, I

> >have had a quantitative PCR (no results yet), lots of other tests

as part

> >of a research project at NIH and today a BMB. I should know a

lot in a

> >week or so where I stand. I repeat something I said a week ago.

Dr.

> >Goldman, well regarded as a CML expert in the UK is doing CML

research at

> >NIH and he said quantitative PCRs are essential and that Europe

is 10

> >years ahead of the U.S. in doing them. Start nagging! They can

only be

> >read at certain labs and they're all different but still worth

the effort.

> >

> >Also, four years into CML I was being told that as long as I had

regular

> >FISH that I wouldn't need BMBs. I knew that was wrong and once

again the

> >patient knew more than the doc. Don't get lazy about your

testing. Nag,

> >nag, nag.

> >

> > L

> >

June 29, 2005

Hey !

Great to hear from you. As it happened, I was already going to see Dr. Goldman

when these interphase cells showed up so that was serendipity. I had just

always heard that the only way to really see what was going on with CML was to

actually look at the marrow -- at least once a year after stabilization. But,

my onc diidn't want to do one either so maybe the thinking is changing about

that. PCR-RT's may be getting better.

Glad you have life by the horns but sorry you're dealing with fatigue. IO hope

you're diligent about eating the kinds of things that will increase your energy.

Even though I get Procrit every two weeks, I stilll drink a bottle of Ensure in

the morning for breakfast and take vitamins and iron (3 tabs a day). I musst

admit I'm not so great with red meat although the pork here in Virginia is very

good -- especially the tenderloins. I'm off beef now that Mad Cow Disease has

shown up. Not logical, I know but a choice.

I think we've all had a lot on our plates -- including you! Just CML is enough.

Just got back from the vet with one of my cats (Gumbo) who was symptomatic of

infected sinuses, and various other things. I'm very happy to report that

apparently he just has infected sinuses and does NOT have leukemia. Hooray!

Live large.

Love,

L

Re: [ ] First BMB in 1 1/2 years- & all