Re: possible myelodysplasia

[Guest guest]

Hi

You don't say why they think you have MDS but I'll assume it's

because your counts are extremly low? MDS is a syndrome that can

often look the same as the myelosuppression that Gleevec causes.

MDS causes the bone marrow to stop producing various cell lines

(usually all three....reds, whites and platelets) but sometimes it

can be just the red cells or a combination of reds and either whites

or platelets. Hopefully it'll turn out to be a Gleevec side effect

instead of MDS.

How low are your counts? I think in MDS, the red cells aren't only

very low but they also look quite abnormal.

Let us know what they find in the biopsy,

Tracey

[Guest guest]

Hi Chris

I saw your message and thought I'd tell you what happened to me so you can

keep an eye on your situation. I achieved CCR on Glivec but with the help

of Neupogen but still Glivec suppressed my marrow extensively, low Hb and

low platelets all the way but still in CCR for three years. Then in March

of last year they discovered blasts in mymarrow indicative of possible MDS.

No one really knew at the time what was happening, my PCR was CML was still

very very low. I was followed very closely at the Hammersmith in London and

the blasts kept appearing in my 12 weekly bmbs, sometimes a bit up sometimes

a bit down. In January of this year, the MDS went crazy and turned into AML

and I was admitted for urgent chemo etc..... my diary is on the UK site

www.cmlsupport.org.uk - I don't want to alarm you but I just want you to be

careful, I delayed my treatment for this MDS because my daughter was

pregnant at the time and because also I felt really well - big mistake.

Anyway the long and short of it is that I had one round of Flag Ida chemo

followed by a mini allo SCT [mother donor - very rare].

Would be interesting to know what they actually found in your marrow to

think you may have MDS ....

I hope all this turns out not to be MDS and just glivec related. I was told

my case was very very rare and in fact unique at that time.

With best wishes

in London

[ ] possible myelodysplasia

> Hi everyone. does anyone know anything about myelodysplasia? I had a

> bone marrow done yesterday, because they think I may have it. I've been

> in remission since june of 04, but now it looks like something else is

> showing up. my fish tests still look fine, though.

> I'm scared.

>

> any ideas/info welcome

>

> chris in minn

>

>

[Guest guest]

Hi .

Thank you for your quick response. This sounds like what they are thinking is

happening to me. They did the bone marrow, because I have red blood cells that

are consistently large. This started being noticed about 3 months ago, and at

first they thought it was merely a reaction to having been quite anemic. Now

that my iron is stable, the enlargement has returned and they are beginning to

look for the possible MDS. They also told me it would be quite rare, although

not unheard of for this to be mds. I will find out the results of the bone

marrow biopsy this tues at around 3pm. I am really quite worried.

thanks for the info, though

chris in minn

[ ] possible myelodysplasia

> Hi everyone. does anyone know anything about myelodysplasia? I had a

> bone marrow done yesterday, because they think I may have it. I've been

> in remission since june of 04, but now it looks like something else is

> showing up. my fish tests still look fine, though.

> I'm scared.

>

> any ideas/info welcome

>

> chris in minn

>

>

[Guest guest]

Hi

It is quite normal for Gleevec patients to have large red cells. I

can't see how this alone would lead them to believe that you might

have MDS. The obvious sign of MDS is an EXTREMELY low red count and

possibly low white and platelet counts as well. I mean, way beyond

the low end of normal. How low is your red count?

Tracey

[Guest guest]

At 04:49 PM 10/28/05 +0000, you wrote:

>Hi

>

>It is quite normal for Gleevec patients to have large red cells. I

>can't see how this alone would lead them to believe that you might

>have MDS. The obvious sign of MDS is an EXTREMELY low red count and

>possibly low white and platelet counts as well. I mean, way beyond

>the low end of normal. How low is your red count?

>Tracey

Hi

I have been told the same thing as Tracey....with Gleevec-induced anemia,

the red blood cells get larger to compensate....my MCV is usually 100-101.

Try to get as much information as you can when you see your doctor....and

please share with the list. I hope this turns out to be nothing important.

C.