Re: Newly diagnosed--low platelet count

[Guest guest]

Hi , I had the same issues in the beginning with low platelet count.

It was not big thing, and within a few weeks they rebounded on their own with

no change in my Gleevec dosage, 400mg.

chris

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[Guest guest]

Hi ,

Congratulations on your good response to Gleevec but sorry you have

to take it at all. You are doing the right thing by seeing Dr.

Shah. He is a top cml specialist. It sounds like you can use a

visit to a specialist. It is not typically recommended to drop the

dose of Gleevec lower than 400 mg in response to low counts.

Typically platelets are allowed to go down to 50 before making any

changes and then if they go too low the patient takes a break from

Gleevec until they rise back to around 75 or so. It's not unusual to

have these low counts early in treatment. Your platelets should come

back up once your marrow has been cleaned out of the mass of leukemia

cells. Good luck to you.

Dorothy

dx 5/2000

On Jul 29, 2007, at 2:12 AM, peisrael wrote:

> I am a 55-year old male diagnosed with CML on 5/31/2007

> (asymptomatic; diagnosis because of unrelated blood test relating to

> a possible infection). I've been on Gleevec (400mg) since 6/6/2007,

> and have had a good hematologic response (WBC down from 192 to normal

> range within 3 weeks; differentials looking good/normal, etc.). Red

> blood count and related were initially low; now have moved into more

> or less normal range--except for my platelets, which have hovered

> around 100-115, and have most recently dropped to 96. My oncologist

> says I will need to reduce my Gleevec dosage if platelets aren't

> above 100 by next test. I view the Gleevec as (so far) being a

> miracle drug and am reluctant to drop the dosage with such overall

> good and fast results. Also, I haven't had any side effects (yet;

> knock wood). Have others gone to lower dosages for the same reason?

>

> By the way, I have an appointment with Dr. Neil Shah at UCSF in about

> a week and a half (self-pay referral, but my oncologist and I agree

> that I might as well see a real specialist). Have others met with

> Dr. Shah? Impressions? (I'm in Sacramento and Dr. Shah is close and

> my oncologist recommended him.)

>

>

>

>

>

[Guest guest]

Hi ,

Welcome to the group.

You will be in great hands with Dr. Shah.

Zavie

>

> I am a 55-year old male diagnosed with CML on 5/31/2007

> (asymptomatic; diagnosis because of unrelated blood test relating

to

> a possible infection). I've been on Gleevec (400mg) since

6/6/2007,

> and have had a good hematologic response (WBC down from 192 to

normal

> range within 3 weeks; differentials looking good/normal, etc.).

Red

> blood count and related were initially low; now have moved into

more

> or less normal range--except for my platelets, which have hovered

> around 100-115, and have most recently dropped to 96. My

oncologist

> says I will need to reduce my Gleevec dosage if platelets aren't

> above 100 by next test. I view the Gleevec as (so far) being a

> miracle drug and am reluctant to drop the dosage with such overall

> good and fast results. Also, I haven't had any side effects (yet;

> knock wood). Have others gone to lower dosages for the same

reason?

>

> By the way, I have an appointment with Dr. Neil Shah at UCSF in

about

> a week and a half (self-pay referral, but my oncologist and I

agree

> that I might as well see a real specialist). Have others met with

> Dr. Shah? Impressions? (I'm in Sacramento and Dr. Shah is close

and

> my oncologist recommended him.)

>

>

>

[Guest guest]

I am so sorry hear about your dx but I, too, am from Sacramento - dx 7/04 and am

currently on Sprycel (70mg) and doing awesome. Gleevec was tough on me for side

effects and Sprycel seems to be much easier on me. I love my oncologist Dr.

Grennan w/ Kaiser and he confers with Stanford specialists if he has concerns.

I went to the emergency care when I experienced chest pains and terrible

headache then blood tests revealed 3.5 million platelets. I was so shocked to

say the least to find out I had CML ... I just thought I was going through the

change ... boy was I wrong. I am fortunate to have a sibling match if a BMT is

ever an option. I also reduced my Gleevec to 300 mg when side effects were

tough and my counts stayed great. Hope your count balances out soon so that you

won't have to reduce.

If I am not mistaking Dr. Shah is an excellent doctor and very experienced

with CML.

Good Luck

peisrael <peisrael@...> wrote:

I am a 55-year old male diagnosed with CML on 5/31/2007

(asymptomatic; diagnosis because of unrelated blood test relating to

a possible infection). I've been on Gleevec (400mg) since 6/6/2007,

and have had a good hematologic response (WBC down from 192 to normal

range within 3 weeks; differentials looking good/normal, etc.). Red

blood count and related were initially low; now have moved into more

or less normal range--except for my platelets, which have hovered

around 100-115, and have most recently dropped to 96. My oncologist

says I will need to reduce my Gleevec dosage if platelets aren't

above 100 by next test. I view the Gleevec as (so far) being a

miracle drug and am reluctant to drop the dosage with such overall

good and fast results. Also, I haven't had any side effects (yet;

knock wood). Have others gone to lower dosages for the same reason?

By the way, I have an appointment with Dr. Neil Shah at UCSF in about

a week and a half (self-pay referral, but my oncologist and I agree

that I might as well see a real specialist). Have others met with

Dr. Shah? Impressions? (I'm in Sacramento and Dr. Shah is close and

my oncologist recommended him.)

---------------------------------

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[Guest guest]

Thanks, all, for your kind advice and words. Based on my CBCD this

morning, my oncologist is keeping me on the same dose.

--I too am with Kaiser. My onc is Lai Fong Hui and she is

terrific! She spends a good deal of time with me and my wife making

sure that we understand what's going on and answering our questions and

generally making sure that we're doing ok. She's the one who

recommended I talk with Dr. Shah.

[Guest guest]

Hi , good to hear from you,It sounds like we got

dx'd about the same time. I too was just in for a

routine visit and had blood work done. What a shock

that phone call was!!! I was anemic at first, put on

iron supps. that seems to have helped. I started on

400mgs but now am down to 200mgs cause of side

effects; but I am not sure about #'s. I am going to

get copies of labs from now on. Guess I didn't know to

ask. I was also un-aware of the wbc dx's. When mine

first dropped I was so happy. But then my onc.

explained to me that there is many drugs to drop the

white count. He has to get my body to stop making the

phil chromisome. And he felt the Gleevic was the best

chance of that. When I started w/all the side effects

he told me that it has to be a medication I can take

for the rest of my life and could I live with these

reactions always? Well some I feel I could live with;

but not all of them and not together like they are.

The vision problems are scarey to me.I see my onc in a

week...lots of questions this time. Thanx for helping

me muddle through all this. Maurene

--- peisrael <peisrael@...> wrote:

> I am a 55-year old male diagnosed with CML on

> 5/31/2007

> (asymptomatic; diagnosis because of unrelated blood

> test relating to

> a possible infection). I've been on Gleevec (400mg)

> since 6/6/2007,

> and have had a good hematologic response (WBC down

> from 192 to normal

> range within 3 weeks; differentials looking

> good/normal, etc.). Red

> blood count and related were initially low; now have

> moved into more

> or less normal range--except for my platelets, which

> have hovered

> around 100-115, and have most recently dropped to

> 96. My oncologist

> says I will need to reduce my Gleevec dosage if

> platelets aren't

> above 100 by next test. I view the Gleevec as (so

> far) being a

> miracle drug and am reluctant to drop the dosage

> with such overall

> good and fast results. Also, I haven't had any side

> effects (yet;

> knock wood). Have others gone to lower dosages for

> the same reason?

>

> By the way, I have an appointment with Dr. Neil Shah

> at UCSF in about

> a week and a half (self-pay referral, but my

> oncologist and I agree

> that I might as well see a real specialist). Have

> others met with

> Dr. Shah? Impressions? (I'm in Sacramento and Dr.

> Shah is close and

> my oncologist recommended him.)

>

>

>

>

>

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[Guest guest]

I am so glad to hear that. I have been very fortunate - Kaiser has served me

well. I hope you share with the group after your appt with Dr Shah

peisrael <peisrael@...> wrote: Thanks, all, for your kind

advice and words. Based on my CBCD this

morning, my oncologist is keeping me on the same dose.

--I too am with Kaiser. My onc is Lai Fong Hui and she is

terrific! She spends a good deal of time with me and my wife making

sure that we understand what's going on and answering our questions and

generally making sure that we're doing ok. She's the one who

recommended I talk with Dr. Shah.

---------------------------------

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[Guest guest]

,

I have been on Gleevec since 2001 at a 300mg-400mg dose. My platelets have

remained in the low range 85,000-120,000 the whole time. I'm in complete

cytogenetic remission and feeling great. On my oncologist's recommendation,

I stopped my medication twice in the beginning of my treatment when my

platelets went below 50,000 but went right back on once platelets were up to

100,000 (took about a week). Gleevec has kept me in complete remission

almost all of the past 6 years.

Fran