Re: Aggrivated - Sheila

[Guest guest]

Dear Shiela,

Your experience does sound aggravating, and I hope that things settle down

soon. Actually, it's not that unusual to take a while to get things like

platelet counts and white blood counts under control, but most folks do in

time, so be as patient as you can.

As to myelofibrosis, this is a condition in the bone marrow in which normal

marrow is replaced by excess fibrous tissue. You're right that most CML

patients have more than normal people at the time of their diagnosis. In

most folks this tends to improve the longer we're on Gleevec (IM), and an

August diagnosis is pretty recent, so unless your level of fibrosis is

actually getting worse, you probably don't have to worry about it. Come to

think of it, even in your most recent bone marrow showed more fibrosis than

the previous one, there still may be no reason for concern: marrow can vary

from location to location, and it may simply be that the most recent sample

was taken from a more fibrous place.

One final comment: I applaud your heme/onc's calling a CML specialist at

Mayo, but this fact plus some of what he told you suggests that he probably

doesn't treat that many CML patients and is feeling a bit over his head.

Under such circumstances it's not unusual for docs to say things (more or

less to themselves as they're trying to get things figured out) which alarm

their patients, but don't really mean much. I'd assume this to be the case

here; however, if he remains confused and flustered though, you might

consider a switch, if possible, to someone at Mayo with more experience with

this disease.

Yours,

R

> Date: Thu, 02 Feb 2006 21:24:10 -0000

> From: " sheilamonster13 " <sheilamonster13@...>

> Subject: Aggrivated

>

> I've posted a time or two on how I was so freaked out with my counts

> not cooperating. I was diagnosed with cml in August 2005 went on

> 400 mgs of gleevec and since then I have been on and off several

> times because my white count and anc were too low. When I go off

> the gleevec my platelets always get out of whack. So a couple of

> weeks ago I had a nervous breakdown at the docs office over all of

> this and the nurses assured me that everything was OK that the med

> is just working too well. So my local onc called Mayo in MN and

> discussed what was going on with me with the doc that I saw there.

> Of course they told him unless my anc got below 1500 not to take me

> off the gleevec. So I go back today and my platelets are finally

> close to normal range and not over a million like they were and the

> doc tells me that he's never had anyone respond like me and he just

> can't figure me out that I was " special " to keep taking the med even

> though my counts are low and that he was glad that I was going to

> Mayo in March. Talk about being aggrivated I felt like he just

> doesn't know what to do with me so should I be totally freaked out

> again? Then he said something about me having myelofibrosis (a

> different type of blood cancer) with the cml. I thought all cml

> patients had fibrous tissue??? I fell like I'm in a fog here again

> shoud I be freaked out and running scared or what. Thanks for

> listening!

>

> Sheila