Re: Platelet count

[Guest guest]

Hi Marjorie,

My platelet count was 43,000 for months. My GP told me I was still in the

safe region, for everyday life. I could not get a biopsy, because they were

afraid of bleeding, but I was not going to hemorage (sp) or anything like

that. My last platelet count was 90,000.

Good Luck,

Sue

[Guest guest]

Hi Marjorie,

My platelet count was 43,000 for months. My GP told me I was still in the

safe region, for everyday life. I could not get a biopsy, because they were

afraid of bleeding, but I was not going to hemorage (sp) or anything like

that. My last platelet count was 90,000.

Good Luck,

Sue

[Guest guest]

Hi Marjorie,

My platelet count was 43,000 for months. My GP told me I was still in the

safe region, for everyday life. I could not get a biopsy, because they were

afraid of bleeding, but I was not going to hemorage (sp) or anything like

that. My last platelet count was 90,000.

Good Luck,

Sue

[Guest guest]

Hi Marjorie,

My platelet count was 43,000 for months. My GP told me I was still in the

safe region, for everyday life. I could not get a biopsy, because they were

afraid of bleeding, but I was not going to hemorage (sp) or anything like

that. My last platelet count was 90,000.

Good Luck,

Sue

[Guest guest]

In a message dated 11/25/2001 4:27:34 PM Eastern Standard Time, bsgttx@... writes:

Hello Everyone,

I'd be interested to know if anyone's platelet count has dropped dramatically and they were able to reverse it. If so, would you please share this information? Someone close to me has this problem.

Thanks,

bg

A low platelet count is known as Thrombocytopenia and if it is chronic, than the person is usually diagnosed with ITP - Immune (or Idiopathic) Thrombocytopenic Purpura. This is an autoimmune condition - surprise! - and the treatments for it would sound more than familiar to the folks on this group - prednisone being the most popular. Like other autoimmune conditions, it can go through periods of flares and remissions. Because a drastically low platelet count can create an extreme risk of bleeding (including internal bleeding), doctors sometimes want to treat it with equally drastic measures, including splenectomy. From what I have read and the people I have talked to, that is one option I will NEVER personally take. I've done well on IVIG treatments, but different things work better for different people. A very good website to look at would be ITPpeople.com

Kim

[Guest guest]

sheila hoffman <sheilamonster13@...> wrote: Hello! I've got a question

that I'm hoping someone can help me with. I was diagnosed in August 2005 with

CML to make a long story short after about 3 weeks my white count and anc

crashed and I was taken off the drug for a few weeks then back on and off and so

forth. By December I ws so freaked out that I wasn't on the med that my local

doc had me taking 400 mgs every other day instead of every day. Well, my counts

started to go up but so did my platelets so he was concerned and wanted Mayo

clinic to do another bmb on me. I was scheduled to go to Mayo at the end of

March. So at the beginning of March I spoke with my Mayo doc over the phone to

find out that when I was first diagnosed that my cells were 98% leukemic and at

the end of September when they re did the FISH they were at 3.4%. So I had the

FISH re drawn and it showed that 28% of my cells were now leukemic. They

figured that is was because I wasn't on the

proper dose and that I wasn not to go off the gleevec for any reason if my anc

& white count crashed that they would give me a booster shot. Well, yesterday I

had to get the shot. My anc was 504 and my wc was 1.8 but my platelets went

from 549 to 739 (they were over a million when I was at Mayo). Mayo told me to

watch fro the platelets to come down that was a good sign that the med was

working. So my question is do you think that the med isn't working? I posted

on another site and got some feed back but I am just so freaked out and upset

again over this. Also I was told that CML people have fibrosis in the marrow

is this true? Becasue on my lab results it says Reticulin Fibers are increased,

grade 3+. How bad is this??

Sheila

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[Guest guest]

Hi Sheila,

It takes some time for the platelets to come down. They aren't as

fast as the white cells so try to be patient.

There are other drugs available to control platelets if they

continue to be a problem (Agrylin). I know of at least one patient

who had ET (essential thrombocytosis) along with CML which made his

platelet count always high and had nothing to do with the CML being

controlled or not so this may be something for them to look into if

things persist.

I don't know who told you that people with CML have fibrosis in the

marrow because the vast majority of us do not. In the old days of

Interferon, marrow fibrosis was common and not a good thing but

that's no longer the case with Gleevec.

I believe that your riticulin fibers are increased simply because

your platelets are increased. I really don't think that's anything

significant at this point so try not to worry about it. This isn't

the same as marrow fibrosis.

Take care,

Tracey

Hello! I've got a

question that I'm hoping someone can help me with. I was diagnosed

in August 2005 with CML to make a long story short after about 3

weeks my white count and anc crashed and I was taken off the drug

for a few weeks then back on and off and so forth. By December I ws

so freaked out that I wasn't on the med that my local doc had me

taking 400 mgs every other day instead of every day. Well, my

counts started to go up but so did my platelets so he was concerned

and wanted Mayo clinic to do another bmb on me. I was scheduled to

go to Mayo at the end of March. So at the beginning of March I

spoke with my Mayo doc over the phone to find out that when I was

first diagnosed that my cells were 98% leukemic and at the end of

September when they re did the FISH they were at 3.4%. So I had the

FISH re drawn and it showed that 28% of my cells were now leukemic.

They figured that is was because I wasn't on the

> proper dose and that I wasn not to go off the gleevec for any

reason if my anc & white count crashed that they would give me a

booster shot. Well, yesterday I had to get the shot. My anc was

504 and my wc was 1.8 but my platelets went from 549 to 739 (they

were over a million when I was at Mayo). Mayo told me to watch fro

the platelets to come down that was a good sign that the med was

working. So my question is do you think that the med isn't

working? I posted on another site and got some feed back but I am

just so freaked out and upset again over this. Also I was told that

CML people have fibrosis in the marrow is this true? Becasue on my

lab results it says Reticulin Fibers are increased, grade 3+. How

bad is this??

>

> Sheila

>

> ---------------------------------

> Celebrate Earth Day everyday! Discover 10 things you can do to

help slow climate change. Earth Day

>

>

> ---------------------------------

> goes everywhere you do. Get it on your phone.

>

>

[Guest guest]

Hi sheila - My name is and I was diagnosed in 2004 and at the time had over

3.5 million platelets - I had two seperate platelet therisis (sp) to bring them

down at which time I was only on Agrylin. My doctor was certain I had CML but

had not gotten the test results back. Once it was determined he had me start on

400 mg Gleevec and my counts continued to decrease and have stayed normal. I

have another BMB in May and this will determine if I have reached a CCR which I

have not yet. Be patient and stay with the Gleevec I am sure you will respond

more positively.

Tracey <traceyincanada@...> wrote: Hi Sheila,

It takes some time for the platelets to come down. They aren't as

fast as the white cells so try to be patient.

There are other drugs available to control platelets if they

continue to be a problem (Agrylin). I know of at least one patient

who had ET (essential thrombocytosis) along with CML which made his

platelet count always high and had nothing to do with the CML being

controlled or not so this may be something for them to look into if

things persist.

I don't know who told you that people with CML have fibrosis in the

marrow because the vast majority of us do not. In the old days of

Interferon, marrow fibrosis was common and not a good thing but

that's no longer the case with Gleevec.

I believe that your riticulin fibers are increased simply because

your platelets are increased. I really don't think that's anything

significant at this point so try not to worry about it. This isn't

the same as marrow fibrosis.

Take care,

Tracey

Hello! I've got a

question that I'm hoping someone can help me with. I was diagnosed

in August 2005 with CML to make a long story short after about 3

weeks my white count and anc crashed and I was taken off the drug

for a few weeks then back on and off and so forth. By December I ws

so freaked out that I wasn't on the med that my local doc had me

taking 400 mgs every other day instead of every day. Well, my

counts started to go up but so did my platelets so he was concerned

and wanted Mayo clinic to do another bmb on me. I was scheduled to

go to Mayo at the end of March. So at the beginning of March I

spoke with my Mayo doc over the phone to find out that when I was

first diagnosed that my cells were 98% leukemic and at the end of

September when they re did the FISH they were at 3.4%. So I had the

FISH re drawn and it showed that 28% of my cells were now leukemic.

They figured that is was because I wasn't on the

> proper dose and that I wasn not to go off the gleevec for any

reason if my anc & white count crashed that they would give me a

booster shot. Well, yesterday I had to get the shot. My anc was

504 and my wc was 1.8 but my platelets went from 549 to 739 (they

were over a million when I was at Mayo). Mayo told me to watch fro

the platelets to come down that was a good sign that the med was

working. So my question is do you think that the med isn't

working? I posted on another site and got some feed back but I am

just so freaked out and upset again over this. Also I was told that

CML people have fibrosis in the marrow is this true? Becasue on my

lab results it says Reticulin Fibers are increased, grade 3+. How

bad is this??

>

> Sheila

>

> ---------------------------------

> Celebrate Earth Day everyday! Discover 10 things you can do to

help slow climate change. Earth Day

>

>

> ---------------------------------

> goes everywhere you do. Get it on your phone.

>

>