Re: Thrombocytopenia (blood disorder)

[Guest guest]

Lottie--Gleevec has always suppressed my platelets. As a matter of fact, in the

beginning (almost 12 years ago now) I had to stop Gleevec until my platelets

rose back above 50. For several years this went on. Then they stabilized in the

60's and 70's and my red blood cells plunged. Today, my main side effect is the

anemia, although it's better now. My local oncologist did a test for B12 levels

and I was way below normal, so she started me on 2,000 units of B12/day. That

was a few years ago, and my platelets are always in the 90's or above 100 now. I

think it was due to the B12.

Unfortunately, my anemia persists. I give myself a Procrit shot once a week and

that keeps my hemaglobinin the 11's. I don't really like to be on the Procrit,

but when I stop or space it out to every 10 days or two weeks, my Hg drops to

the 9's and 8's. Maybe with more time it will be better. All of this is small

potatoes compared to the Interferon I took before I got into the Phase 1 Gleevec

trial 12 years ago!!

Virginia

[Guest guest]

Hello Lottie and Jimmy, good luck you two on your trip down, hope all goes well

with the both of you .

I have had thrombocytopenia for about 3.5 years now.  It appears on every blood

test I get which is twice week.

as you said its just low platelets. Mine runs from 0 to about 20 or so.. ) is

not nice but I feel ok

I also get the message (warning) Leukopenia this just means low white count

(mine is not too bad its 2.0) or thereabouts

Neutropenia all this means is I have low neutrophils (associated with low white

count) which in turn affects

low ANC (Absolute neutrophil count) This just means to stay out of crowds I have

a shorthand to figure out ANC

take WBC multiply neutrophils = ANC... or if you like complicate ways of doing

it

 Sample calculation of the ANC:

WBC count: 6,000 cells/mm3 of blood

Segs: 30% of the WBCs

Bands: 3% of the WBCs

Neutrophils (segs + bands): 33% of the WBCs

ANC: 33% X 6,000 = 2,000/mm3

ANC of 2,000/mm3, by convention = 2.0

Normal range: 1.5 to 8.0 (1,500 to 8,000/mm3)

Interpretation: Normal

Mine is 440 as of friday.

As I said I have had those messages for about 3.5 years now ...I feel fine

except tired when Hgb is down to

around 80k . 

They say I should wear a mask, but I find that a bit of a bother so I go into

the hospital without one..

those nurses get quite bossy by time..look after yourself  the both of you

Skip and Kim

________________________________

From: Lottie Duthu <lotajam@...>

CML < >

Sent: Mon, February 28, 2011 2:52:14 AM

Subject: [ ] Thrombocytopenia (blood disorder)

 

I thought I would post this, because I am having difficulty with

thrombocytopenia, caused by low platelets. I am sure some of you had a problem

with it at some time or another. I welcome your input.

***************

Thrombocytopenia is any disorder in which there is an abnormally low amount of

platelets. Platelets are parts of the blood that help blood to clot. This

condition is sometimes associated with abnormal bleeding.

Thrombocytopenia is often divided into three major causes of low platelets:

1.. Low production of platelets in the bone marrow

2.. Increased breakdown of platelets in the bloodstream (called intravascular)

3.. Increased breakdown of platelets in the spleen or liver (called

extravascular)

Disorders that involve low production in the bone marrow include:

a.. Aplastic anemia

b.. Cancer in the bone marrow

c.. Cirrhosis (chronic liver disease)

d.. Folate deficiency

e.. Infections in the bone marrow (very rare)

f.. Myelodysplasia

g.. Vitamin B12 deficiency

Use of certain drugs may also lead to a low production of platelets in the bone

marrow. The most common example is chemotherapy treatment. Disorders that

involve the breakdown of platelets include:

a.. Disseminated intravascular coagulation (DIC)

b.. Drug-induced nonimmune thrombocytopenia

c.. Drug-induced immune thrombocytopenia

d.. Hypersplenism

e.. Immune thrombocytopenic purpura (ITP)

f.. Thrombotic thrombocytopenic purpura

These are the symptoms:

a.. Bruising, Nosebleeds or bleeding in the mouth and gums, and Rash (pinpoint

red spots called petechi). Tests that may be performed are

b.. Complete blood count (CBC) shows low number of platelets.

c.. Blood clotting studies (PTT and PT) are normal.

d.. Bone marrow aspiration or biopsy

e.. Platelet associated antibodies

Treatment depends on the cause of the condition. In some cases, a transfusion of

platelets may be required to stop or prevent bleeding. The outcome depends on

the disorder causing the low platelet counts.

Severe bleeding (hemorrhage) is the main complication. This can include:

a.. Bleeding in the brain (intracranial hemorrhage)

b.. Gastrointestinal bleeding (vomiting blood or blood in the stools)

c.. Nosebleeds

http://tinyurl.com/dbeax

FYI,

Lottie Duthu

[Guest guest]

Hi Virginia, I received a letter from Medicare stating if I wanted Procrit or

Aranesp shots to continue they would cost me $1.700.00 each.  So I stay in the

10's once in a rare while I hit the 11's on the hgb. Isn't Medicare federal, and

if it is, I wonder why their regulations vary?  Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Virginia Garner <vgarner@...>

Subject: [ ] Re: Thrombocytopenia (blood disorder)

Date: Monday, February 28, 2011, 1:44 PM

 

Lottie--Gleevec has always suppressed my platelets. As a matter of fact, in the

beginning (almost 12 years ago now) I had to stop Gleevec until my platelets

rose back above 50. For several years this went on. Then they stabilized in the

60's and 70's and my red blood cells plunged. Today, my main side effect is the

anemia, although it's better now. My local oncologist did a test for B12 levels

and I was way below normal, so she started me on 2,000 units of B12/day. That

was a few years ago, and my platelets are always in the 90's or above 100 now. I

think it was due to the B12.

Unfortunately, my anemia persists. I give myself a Procrit shot once a week and

that keeps my hemaglobinin the 11's. I don't really like to be on the Procrit,

but when I stop or space it out to every 10 days or two weeks, my Hg drops to

the 9's and 8's. Maybe with more time it will be better. All of this is small

potatoes compared to the Interferon I took before I got into the Phase 1 Gleevec

trial 12 years ago!!

Virginia

[Guest guest]

My drugs are not covered by Medicare, but by other insurance, Lottie. If one of

my blood tests is above 10, they won't cover a prescription renewal. Hence, I go

up to 11's, feel pretty good, have a blood test that shows this, when the

3-month prescription runs out, no more Procrit. My Hg falls below 10 into the

9's, I feel horrible, then I get the prescription renewed. It' a never-ending

vicious circle and not at all logical or economical for the insurance company,

but who says our healthcare system is logical or rational?? Ha.

Virginia

[Guest guest]

Can't you get your doctor to write to the insurance company, pointing out the

error of their ways? I don't know what else to suggest. If you lived in UK you

would write to your MP and ask him/her to intervene on your behalf.

Good luck anyway, Shelagh

>

>

> My drugs are not covered by Medicare, but by other insurance, Lottie. If one

of my blood tests is above 10, they won't cover a prescription renewal. Hence, I

go up to 11's, feel pretty good, have a blood test that shows this, when the

3-month prescription runs out, no more Procrit. My Hg falls below 10 into the

9's, I feel horrible, then I get the prescription renewed. It' a never-ending

vicious circle and not at all logical or economical for the insurance company,

but who says our healthcare system is logical or rational?? Ha.

>

> Virginia

>

>

>

>

>

>

>

[Guest guest]

My doctor has written and called many times. She says she is surrounded by

idiots when she deals with them. They just can't get it that CML patients are

unique in that they are in treatment every day, unlike other cancer patients who

have rounds of chemotherapy. We are being thrown into the big pot with everyone

else when in reality, we are in a completely different situation. So far, the

insurance companies aren't getting it. They could actually be saving a lot of

money by allowing me to keep my Hg close to normal.

What is, is. Over these past 12 years I've been on Gleevec, I just deal with it

the best I can. Part of that " dealing " is training and fundraising for marathons

for the Leukemia & Lymphoma Society. That proves to me that I'm strong and able

despite the small bumps in the road. As I said before, this side effect is

NOTHING compared to the effects of the Interferon I took the first year after I

was diagnosed. Every day I wake up and give thanks for being alive.

Virginia

[Guest guest]

Hi Virginia,

Can you stop taking Gleevec? Did you try once? Have you been PCRU for

at least two years? There were 100 CMLers in the STIM trial. Now, there are 200

CMLers more who are participating.

Sincerely,

Gilles

Link: http://www.cmleukemia.com/the-french-trial-called-stim-stop-imatinib.html

>

>

> My doctor has written and called many times. She says she is surrounded by

idiots when she deals with them. They just can't get it that CML patients are

unique in that they are in treatment every day, unlike other cancer patients who

have rounds of chemotherapy. We are being thrown into the big pot with everyone

else when in reality, we are in a completely different situation. So far, the

insurance companies aren't getting it. They could actually be saving a lot of

money by allowing me to keep my Hg close to normal.

>

> What is, is. Over these past 12 years I've been on Gleevec, I just deal with

it the best I can. Part of that " dealing " is training and fundraising for

marathons for the Leukemia & Lymphoma Society. That proves to me that I'm strong

and able despite the small bumps in the road. As I said before, this side effect

is NOTHING compared to the effects of the Interferon I took the first year after

I was diagnosed. Every day I wake up and give thanks for being alive.

>

> Virginia

>

>

>

[Guest guest]

Hi: I am just trying to catch up on all the goings on, being I have been sick

with a DVT of my right leg. Trying to adjust to Coumadin, but I am anemic from

my Gleevec, and my platelet count has been holding at 127 for awhile. I am

curious to see if there are any changes with the blood thinner I am on. I

remember those Interferon days too. I should get my B12 checked out. I just

started year number 13 with the CML, but with all the side effects of Gleevec it

has done its job for me. My husband just had to start giving himself B12 shots

once a month due to being low on B12. That information you gave was really

helpful. Glad your doing good with your platelets now. Your information was

very helpful to me.

>

>

> Lottie--Gleevec has always suppressed my platelets. As a matter of fact, in

the beginning (almost 12 years ago now) I had to stop Gleevec until my platelets

rose back above 50. For several years this went on. Then they stabilized in the

60's and 70's and my red blood cells plunged. Today, my main side effect is the

anemia, although it's better now. My local oncologist did a test for B12 levels

and I was way below normal, so she started me on 2,000 units of B12/day. That

was a few years ago, and my platelets are always in the 90's or above 100 now. I

think it was due to the B12.

>

> Unfortunately, my anemia persists. I give myself a Procrit shot once a week

and that keeps my hemaglobinin the 11's. I don't really like to be on the

Procrit, but when I stop or space it out to every 10 days or two weeks, my Hg

drops to the 9's and 8's. Maybe with more time it will be better. All of this is

small potatoes compared to the Interferon I took before I got into the Phase 1

Gleevec trial 12 years ago!!

>

> Virginia

>

>

>

[Guest guest]

Hi Gilles,

I appreciate your trying to help me find an answer. Yes, I have been PCRU for

the last four years. I had trouble reaching that due to having to hold Gleevec

when my counts plunged for the first 8 years I was on the drug. But now, things

are good. I know about the STIM trials and others. My husband and I attend the

ASH meeting every year and attend the CML sessions. I know many of the most

prominent researchers personally due to being in the original trial, so I love

to say hello to them. We also read all the abstracts, so we are pretty

up-to-date on the latest CML developments and I monitor the CML online

discussion groups in order to follow what my fellow CMLers are experiencing.

Although it is tempting to join a trial in order to stop taking the drug, I am

not interested in tempting fate. I've worked too hard to get to where I am. I

remember too well what it was like when I was diagnosed almost 14 years ago, and

I just want to stay where I am. My oncologist is at UCLA and one of the people

who runs trials for CML drugs. He worked with Dr. Sawyers who ran the Phase 1

trial that I was in before Dr. Sawyers moved to Sloan Kettering Cancer Center in

NYC. He also worked Dr. Shah who was one of the Sprycel pioneers. Dr. Paquette

has presented many times at ASH, and certainly is one of the CML experts. He

understands my reluctance to stop the drug and agrees that it is only tempting

fate.

Again, thanks for your concern.

Virginia