Re: low platelets, appointment with specialist to start t...

[Guest guest]

I can't think of anything that will help with the platelets.

When I recently did the Pegasys/Copegus treatment, my white blood count was

critically low and I had to have Neupogen injections that helped it. There is

an injection med that helps with the red blood count, but unfortuntely, with

so many people that have low platelets, the only thing I can think of is a

blood transfusion (or some of the components of it) that can help with the

platelets. Hopefully, your doc will have some idea what you can do.

Betty in Arkansas

[Guest guest]

I can't think of anything that will help with the platelets.

When I recently did the Pegasys/Copegus treatment, my white blood count was

critically low and I had to have Neupogen injections that helped it. There is

an injection med that helps with the red blood count, but unfortuntely, with

so many people that have low platelets, the only thing I can think of is a

blood transfusion (or some of the components of it) that can help with the

platelets. Hopefully, your doc will have some idea what you can do.

Betty in Arkansas

[Guest guest]

In a message dated 8/12/2004 7:11:33 PM Eastern Daylight Time,

Arkhepcgal@... writes:

I can't think of anything that will help with the platelets.

I can.........Procrit. It is what I am going to try this fall. You might

want to suggest it to your doctor.

Anne

[Guest guest]

In a message dated 8/12/2004 7:11:33 PM Eastern Daylight Time,

Arkhepcgal@... writes:

I can't think of anything that will help with the platelets.

I can.........Procrit. It is what I am going to try this fall. You might

want to suggest it to your doctor.

Anne

[Guest guest]

In a message dated 8/12/2004 7:11:33 PM Eastern Daylight Time,

Arkhepcgal@... writes:

I can't think of anything that will help with the platelets.

I can.........Procrit. It is what I am going to try this fall. You might

want to suggest it to your doctor.

Anne

[Guest guest]

In a message dated 8/12/2004 7:11:33 PM Eastern Daylight Time,

Arkhepcgal@... writes:

I can't think of anything that will help with the platelets.

I can.........Procrit. It is what I am going to try this fall. You might

want to suggest it to your doctor.

Anne

[Guest guest]

Betty,

I too had a problem with low platelets...they were threatening to pull me from

treatment. I did a lot of research and discovered that Vitamin K and extra

calcium are critical to the production of platelets. So I figured if I were

doing a treatment that was destroying my platelets, maybe if I could increase

production I could balance the scales. Two weeks after starting the K with an

extra dose of calcium, my platelets pulled up to 89,000 which is totally

acceptable on treatment.

So, you might want to give it a try....

Tatezi

Re: low platelets, appointment with specialist to

start t...

I can't think of anything that will help with the platelets.

When I recently did the Pegasys/Copegus treatment, my white blood count was

critically low and I had to have Neupogen injections that helped it. There is

an injection med that helps with the red blood count, but unfortuntely, with

so many people that have low platelets, the only thing I can think of is a

blood transfusion (or some of the components of it) that can help with the

platelets. Hopefully, your doc will have some idea what you can do.

Betty in Arkansas

[Guest guest]

Betty,

I too had a problem with low platelets...they were threatening to pull me from

treatment. I did a lot of research and discovered that Vitamin K and extra

calcium are critical to the production of platelets. So I figured if I were

doing a treatment that was destroying my platelets, maybe if I could increase

production I could balance the scales. Two weeks after starting the K with an

extra dose of calcium, my platelets pulled up to 89,000 which is totally

acceptable on treatment.

So, you might want to give it a try....

Tatezi

Re: low platelets, appointment with specialist to

start t...

I can't think of anything that will help with the platelets.

When I recently did the Pegasys/Copegus treatment, my white blood count was

critically low and I had to have Neupogen injections that helped it. There is

an injection med that helps with the red blood count, but unfortuntely, with

so many people that have low platelets, the only thing I can think of is a

blood transfusion (or some of the components of it) that can help with the

platelets. Hopefully, your doc will have some idea what you can do.

Betty in Arkansas

[Guest guest]

In a message dated 8/12/2004 1:24:18 PM Pacific Daylight Time,

gourdmad@... writes:

One thing - in some recent blood work(hadn't had any done for 2 years) , my

platelets are already low, even before treatment. Any way to pump them up? I

seem to remember what has been said but want to verify my memory.

My Big Sis is doing Pegasys, and had the same issue. The answer was Procrit

.... although even with the Procrit she still had some problems with clotted

platelets. She got on a kick of drinking sports water and drinks that have

electrolytes, and that helped, as well. Her platelets have run from 147 to 43

and back up to 71 (where she is now). By the way, we found out a couple of

weeks ago that she is undetectable (but she still has another 2 months to go

on treatment).

I wanted to comment on the financial assistance aspect of Procrit. The

manufacturer of Procrit will allow it free if you quality as an indigent, and

have no other way to go. Unfortunately, Medicare jumped in and said they would

cover it -- BUT they would not cover the visit to the doctor's office for the

weekly injection. AND it could not be arranged to ship the Procrit directly

to the Big Sis so she could self-inject. So we've been going along with

that program. Now Medicare is making rumblings about the Procrit being FDA

approved for chemo, but not HCV, so they shouldn't have been covering it at

all.

That's the problem we are trying to resolve now. My point here is that if

Medicare kept their little noses out of it in the first place, the

manufacturer of Procrit would have provided it for free all along.

Good luck with the treatment, and be sure to keep us posted.

(aka the Little Sis)

[Guest guest]

In a message dated 8/12/2004 1:24:18 PM Pacific Daylight Time,

gourdmad@... writes:

One thing - in some recent blood work(hadn't had any done for 2 years) , my

platelets are already low, even before treatment. Any way to pump them up? I

seem to remember what has been said but want to verify my memory.

My Big Sis is doing Pegasys, and had the same issue. The answer was Procrit

.... although even with the Procrit she still had some problems with clotted

platelets. She got on a kick of drinking sports water and drinks that have

electrolytes, and that helped, as well. Her platelets have run from 147 to 43

and back up to 71 (where she is now). By the way, we found out a couple of

weeks ago that she is undetectable (but she still has another 2 months to go

on treatment).

I wanted to comment on the financial assistance aspect of Procrit. The

manufacturer of Procrit will allow it free if you quality as an indigent, and

have no other way to go. Unfortunately, Medicare jumped in and said they would

cover it -- BUT they would not cover the visit to the doctor's office for the

weekly injection. AND it could not be arranged to ship the Procrit directly

to the Big Sis so she could self-inject. So we've been going along with

that program. Now Medicare is making rumblings about the Procrit being FDA

approved for chemo, but not HCV, so they shouldn't have been covering it at

all.

That's the problem we are trying to resolve now. My point here is that if

Medicare kept their little noses out of it in the first place, the

manufacturer of Procrit would have provided it for free all along.

Good luck with the treatment, and be sure to keep us posted.

(aka the Little Sis)

[Guest guest]

In a message dated 8/14/2004 12:13:05 PM Eastern Daylight Time,

msnblk@... writes:

Now Medicare is making rumblings about the Procrit being FDA

approved for chemo, but not HCV, so they shouldn't have been covering it at

all.

Dear ,

Delighted to hear about big Sis. One way to fight the " battle " with medicare

is to remind them that ribavirin is chemotherapy......period the end. That

is what the drug was developed for and that is all it is used for. That

argument has been used successfully. Hope that helps.

Anne

[Guest guest]

In a message dated 8/14/2004 12:13:05 PM Eastern Daylight Time,

msnblk@... writes:

Now Medicare is making rumblings about the Procrit being FDA

approved for chemo, but not HCV, so they shouldn't have been covering it at

all.

Dear ,

Delighted to hear about big Sis. One way to fight the " battle " with medicare

is to remind them that ribavirin is chemotherapy......period the end. That

is what the drug was developed for and that is all it is used for. That

argument has been used successfully. Hope that helps.

Anne

[Guest guest]

In a message dated 8/15/2004 8:14:28 PM Eastern Daylight Time,

tatezi@... writes:

Sure hope things work out for you. I know that like me you've tried to fight

this dragon the natural way: nutrition and supplements. But I've come to the

conclusion that natural just doesn't work at eradicating this dragon.

You're right about natural, but it does help keep you functional between

treatments and your advice, Tat, has been invaluable. Anne

[Guest guest]

In a message dated 8/15/2004 8:14:28 PM Eastern Daylight Time,

tatezi@... writes:

Sure hope things work out for you. I know that like me you've tried to fight

this dragon the natural way: nutrition and supplements. But I've come to the

conclusion that natural just doesn't work at eradicating this dragon.

You're right about natural, but it does help keep you functional between

treatments and your advice, Tat, has been invaluable. Anne

[Guest guest]

I go with that. Interferon is used for cancer for the same reason it's used for

hep c, to boost our immune system to fight it off, and procrit is approved for

Interferon. I've never heard of any hepper not being approved for procrit for

their treatment with their insurance company to date (course, this is only from

the people I've talked to in online chat rooms).

Tell your doc and you might even try writing the company who is supplying your

interferon (schering or roche (sp)) and they may be able to provide some more

professional ammunition. I'm sure there's technical loopholes there they can

take advantage of that your insurance provider will have to accept.

Don't give up yet.

Alley

[Guest guest]

I go with that. Interferon is used for cancer for the same reason it's used for

hep c, to boost our immune system to fight it off, and procrit is approved for

Interferon. I've never heard of any hepper not being approved for procrit for

their treatment with their insurance company to date (course, this is only from

the people I've talked to in online chat rooms).

Tell your doc and you might even try writing the company who is supplying your

interferon (schering or roche (sp)) and they may be able to provide some more

professional ammunition. I'm sure there's technical loopholes there they can

take advantage of that your insurance provider will have to accept.

Don't give up yet.

Alley

[Guest guest]

<blushing> Thanks Anne...I'm glad I've been able to help some of us get through

our shared battle....

Tatezi

Re: low platelets, appointment with specialist to

start t...

Tat, has been invaluable. Anne

[Guest guest]

<blushing> Thanks Anne...I'm glad I've been able to help some of us get through

our shared battle....

Tatezi

Re: low platelets, appointment with specialist to

start t...

Tat, has been invaluable. Anne

[Guest guest]

In a message dated 8/18/2004 11:14:43 PM Eastern Daylight Time,

tatezi@... writes:

Thanks Anne...I'm glad I've been able to help some of us get through our

shared battle....

You, Alley, and Claudine are three that have, by your courage, helped me

decide to try treatment ONE more time. If I'd had Procrit the 2nd time, it

might

have worked, I think.

Didn't we have someone drop in named Jaz ?

Anne

[Guest guest]

In a message dated 8/18/2004 11:14:43 PM Eastern Daylight Time,

tatezi@... writes:

Thanks Anne...I'm glad I've been able to help some of us get through our

shared battle....

You, Alley, and Claudine are three that have, by your courage, helped me

decide to try treatment ONE more time. If I'd had Procrit the 2nd time, it

might

have worked, I think.

Didn't we have someone drop in named Jaz ?

Anne

[Guest guest]

>From: " Tatezi " <tatezi@...>

>Reply-Hepatitis C

><Hepatitis C >

>Subject: Re: low platelets, appointment with specialist

>to start t...

>Date: Wed, 18 Aug 2004 22:17:42 -0500

>

><blushing> Thanks Anne...I'm glad I've been able to help some of us get

>through our shared battle....

Hi Everyone,

I am wondering if anyone has ever heard of, or has any experience with

something called Reliv. It's a nutritional supplement that I was going to

try until I read the label. It has 18 mg. of iron. If I took it 2X a day

that would be 36 mg fr iron. They (people who use it) are trying to tell me

1) that it's food so if I eat spinach I can take this and 2) that people

with HepC take it.

The iron is a ferrous fumerate but they didn't know it's source.

Of course I have a call in to my doctor but haven't heard back yet.

Also, about Procrit; when I was on treatment my hemoglobin started dropping

about the 2nd month. They put me in a study for Procrit at Beth Israel

Hosp. in Boston. They study wasn't to see if Procrit helped, they knew it

did. It was to collect data so the FDA would approve it for HCV as well as

the already approved use for cancer. And they said we needed FDA approval

so the insurance companies would pay for it. It was an attempt to close a

loophole that gave the insurance companies the opportunity to refuse

payment. Don't know where the process is at the moment. Glad to hear that

some insurance companies are paying anyway. Amazing!

Pam in Maine

>Tatezi

>

> Re: low platelets, appointment with specialist

>to start t...

>

>

>Tat, has been invaluable. Anne

>

>

[Guest guest]

cable mom <parend53@...> wrote:

I am wondering if anyone has ever heard of, or has any experience with

something called Reliv. It's a nutritional supplement that I was going to

try until I read the label. It has 18 mg. of iron. If I took it 2X a day

that would be 36 mg fr iron. They (people who use it) are trying to tell me

1) that it's food so if I eat spinach I can take this and 2) that people

with HepC take it.

The iron is a ferrous fumerate but they didn't know it's source.

Unless there is NO (as in ZERO) ADDED/SUPPLEMENTED iron then it is NOT a food

source of iron, it is a SUPPLEMENT, no matter how you get it into your body.

Eating, drinking, swallowing a tablet - none of that matters. You can eat a bowl

of cereal that contains 18 mg of iron, but it is NOT a food source, it is

supplemented. The iron in Spinach is a food source. The iron in a steak is a

food source. A nutritional supplement is NOT a food source - it is just what it

says, a nutritional supplement!

C

[Guest guest]

Anne, don't stick me in that list! LOL Good luck to you. I'll support your

decision either way.

Alley

[Guest guest]

Anne, don't stick me in that list! LOL Good luck to you. I'll support your

decision either way.

Alley

[Guest guest]

You know, in the hep c chatrooms I moderate, I talk to several people on

treatment who take Procrit while on treatment for hep C.

It doesn't have to be FDA approved for Hep C/treatment to be given it for hep

C/treatment, only FDA approved for something.

Neurontin isn't FDA approved for migraines, and it is prescribed for migraines.

Zonnegran isn't approved for weight loss, it is prescribed for weight loss.

The list goes on.

just as a note: The anemia listed on the treatment brochure (Schering) is not

iron anemia. I'm cooking or I'd go look up the correct terminology. Anyway,

they list the type of anemia that treatment may cause and it's not the type that

can be helped by taking iron or iron supplements.

Yall may have already discussed this but I'm behind on emails. My roof leaked

during getting the roof redone, attic flooded, ceiling crashed in the living

room, kitchen, hall and one bedroom. Soaked carpet and ceiling tile and made a

BIG mess! So we've been cleaning cleaning cleaning.

Alley