penny

[Guest guest]

Thanks, Barby. I think I will do that just to be safe.

Penny

> > > >

> > > > how are you feeling ...how is the new drug doing that you are

> > taking

> > > to increase red cells? love sandra

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Abijann, I just recently got high speed wireless because we had to have it

to get two computers on the same internet connection. I hope you have a

friend who has one you can see these sites on the way they are supposed to.

I know I got so frustrated trying to view videos with a dial up connection I

didn't even try a lot of the time. Jan H

On Mon, Feb 23, 2009 at 5:41 PM, abijann <no_reply > wrote:

> I'm glad that you could view my video...we only have dial up. On a good

> day I can view very small videos without many bytes...but I cannot

> view any larger ones...it takes them about a complete day to download.

> Thanks anyway. Maybe others here can see it, though...glad you

> posted it. There is the tour guide on this website here that also

> shows liver transplantation:

> http://www.surgery.usc.edu/divisions/hep/patientguide/index.html

>

>

>

--

Jan H

[Guest guest]

Jan, have you ever seen Sharon's headsaga movies? You could watch them now

because of your connection speed. I am posting them here, so you can see them.

Love, Bobby

headsaga part one

http://www.youtube.com/watch?v=6xZXEjliyYY

part two

http://www.youtube.com/watch?v=AK-VJDlGyto & feature=related

part three

http://www.youtube.com/watch?v=KELl6FevEbo & feature=related

long life, old age, everything good-Apache prayer

________________________________

To: livercirrhosissupport

Sent: Monday, February 23, 2009 10:02:11 PM

Subject: Re: Penny

Abijann, I just recently got high speed wireless because we had to have it

to get two computers on the same internet connection. I hope you have a

friend who has one you can see these sites on the way they are supposed to.

I know I got so frustrated trying to view videos with a dial up connection I

didn't even try a lot of the time. Jan H

On Mon, Feb 23, 2009 at 5:41 PM, abijann <no_reply@yahoogroup s.com> wrote:

> I'm glad that you could view my video...we only have dial up. On a good

> day I can view very small videos without many bytes...but I cannot

> view any larger ones...it takes them about a complete day to download.

> Thanks anyway. Maybe others here can see it, though...glad you

> posted it. There is the tour guide on this website here that also

> shows liver transplantation:

> http://www.surgery. usc.edu/division s/hep/patientgui de/index. html

>

>

>

--

Jan H

[Guest guest]

Bobby - I had seen them before, at least one of them, but looked at them

again. You know I have a special interest in her condition since my

grandson who is living with me has had the same brain surgery, with a better

initial result. But he is now exhibiting some of the same symptoms he had

before the surgery, waiting for insurance approval before he sees a neuro

surgeon. It is so touching to me to hear your voice when you talk to her,

and to see her put up so well with you pestering her with the frog. [?] I

was surprised when I first heard your voice. It is smaller than you are.

Or is that your video voice? I sure hope Sharon gets some relief from

her problems. She has had more than her share. Jan H

On Tue, Feb 24, 2009 at 1:00 AM, Bob Aragon wrote:

> Jan, have you ever seen Sharon's headsaga movies? You could watch them

> now because of your connection speed. I am posting them here, so you can see

> them. Love, Bobby

>

> headsaga part one

> http://www.youtube.com/watch?v=6xZXEjliyYY

>

> part two

> http://www.youtube.com/watch?v=AK-VJDlGyto & feature=related

>

> part three

> http://www.youtube.com/watch?v=KELl6FevEbo & feature=related

>

> long life, old age, everything good-Apache prayer

>

> ________________________________

> From: Jan Holman <janholman@... <janholman%40gmail.com>>

> To:

livercirrhosissupport <livercirrhosissupport%40yahoogroups.com>

> Sent: Monday, February 23, 2009 10:02:11 PM

> Subject: Re: Penny

>

> Abijann, I just recently got high speed wireless because we had to have it

> to get two computers on the same internet connection. I hope you have a

> friend who has one you can see these sites on the way they are supposed to.

> I know I got so frustrated trying to view videos with a dial up connection

> I

> didn't even try a lot of the time. Jan H

>

> On Mon, Feb 23, 2009 at 5:41 PM, abijann <no_reply@yahoogroup s.com>

> wrote:

>

> > I'm glad that you could view my video...we only have dial up. On a good

> > day I can view very small videos without many bytes...but I cannot

> > view any larger ones...it takes them about a complete day to download.

> > Thanks anyway. Maybe others here can see it, though...glad you

> > posted it. There is the tour guide on this website here that also

> > shows liver transplantation:

> > http://www.surgery. usc.edu/division s/hep/patientgui de/index. html

> >

> >

> >

>

> --

> Jan H

>

>

[Guest guest]

No, you are correct. My voice is higher than one would expect in such a large

human. I sang tenor in the high school choir. I remember my favories song for

choir was called " magnum mysterium " . So you know this song? I am sorry to hear

your grandson is having more symptoms. They are beginning to suspect that

tethered spinal cords are a major cause of continuing symptoms. Sharon had the

brain stem decompression in 2007and then they followed that last summer with a

de tethering of her cord. NOw there are two new disk herniations, so she is

getting worse. THanks for watching. You tube is going to take away my sound in

the videos just as soon as they discover music in them. LOve, BObby

Sent via BlackBerry from T-Mobile

Re: Penny

>

> Abijann, I just recently got high speed wireless because we had to have it

> to get two computers on the same internet connection. I hope you have a

> friend who has one you can see these sites on the way they are supposed to.

> I know I got so frustrated trying to view videos with a dial up connection

> I

> didn't even try a lot of the time. Jan H

>

> On Mon, Feb 23, 2009 at 5:41 PM, abijann <no_reply@yahoogroup s.com>

> wrote:

>

> > I'm glad that you could view my video...we only have dial up. On a good

> > day I can view very small videos without many bytes...but I cannot

> > view any larger ones...it takes them about a complete day to download.

> > Thanks anyway. Maybe others here can see it, though...glad you

> > posted it. There is the tour guide on this website here that also

> > shows liver transplantation:

> > http://www.surgery. usc.edu/division s/hep/patientgui de/index. html

> >

> >

> >

>

> --

> Jan H

>

>

[Guest guest]

Hi Abijann,

I did shot 13 last night. Only 39 to go. I haven't really had any

headaches in quite a while now, thank goodness. My red blood cell

counts are creeping back up slowly as I continue getting the weekly

shots of Aranesp to stimulate the bone marrow to produce more red

blood cells.

I can't understand why they don't all start the treatment for

Hepatitis C after a transplant. The virus comes back faster and

stronger after transplant because of the immunosuppressant drugs we

have to take. Without treatment, the new liver will only last 2 to

10 years, depending on how fast it damages the liver. I have read

that post transplant patients sometimes have a harder time dealing

with the side effects of treatment, but I have been lucky so far in

that area. It angers me to think they won't start the treatment soon

after transplant. What is the point of getting a transplant if they

don't try to squash the virus from damaging the new liver? The

Hepatitis C virus circulates through the liver as soon as the new

liver is hooked up, and blood starts flowing through. I had a viral

load of 30,000 just days after my transplant, and inflammation in my

new liver on my first liver biopsy about 6 months after transplant.

My transplant hospital, UW Hospital in Madison, Wisconsin starts

treatment soon after the transplant. They told me this at the

evaluation for the transplant that treatment had to be done, and if I

didn't want to do the treatment, I probably wouldn't have received a

transplant.

Penny

>

> My husband take 6...Ursodiol 300 mg a day. Even though they are

> generic...they are still very expensive.

>

> How is your treatment coming along? Sure hope your headaches are

> going away. You probably have each shot on a mark down list.

> What number shot are you on now? Is your cell counts still rising?

> It doesn't seem like they are giving too many people treatments

> after the transplant. A lady was asking a question about her

mother,

> who had had a transplant and is now in stage 3 again and they

> told her she would not live till next year. You would think the

> transplant team would of started her on this treatment right away.

> What is your opinion on this?

>

[Guest guest]

Ahhh, that is so great!

Thanks.

Penny

>

>

> To cheer you a little, read this:

>

>

http://www.boston.com/yourlife/health/diseases/articles/2006/04/20/liv

er\

> _transplant_saves_10_day_old_baby_boy/

>

<http://www.boston.com/yourlife/health/diseases/articles/2006/04/20/li

ve\

> r_transplant_saves_10_day_old_baby_boy/>

>

>

>

>

[Guest guest]

i was told there's 100% chance hcv returns post transplant. i also am

giong to have to do treatment after transplant unless by some miracle i

get to try the new one that's coming out in a year or two and it works.

but i'm genotype 1b and having 4/4 cirrhosis doesn't help much. it's

worth a shot though. guess ya wont know 'less u try right. the immune

suppressing drugs let the virus run wild and it attacks so rapidly. i

think it is important to start treatment asap even to just slow it down

so long as the treatment can be tolerated.

>

> My husband take 6...Ursodiol 300 mg a day. Even though they are

> generic...they are still very expensive.

>

> How is your treatment coming along? Sure hope your headaches are

> going away. You probably have each shot on a mark down list.

> What number shot are you on now? Is your cell counts still rising?

> It doesn't seem like they are giving too many people treatments

> after the transplant. A lady was asking a question about her mother,

> who had had a transplant and is now in stage 3 again and they

> told her she would not live till next year. You would think the

> transplant team would of started her on this treatment right away.

> What is your opinion on this?

>

[Guest guest]

the treatment after transplant concerns me too as the surgeon at uab said no

treatment my husband said the hepatologist said this too. i did not hear this

from the hepatologist and i cant believe that a transplant center would rather

transplant again then try to give tratment. at least try ...what is the

difference either you transplant again without treatment ....or you transplant

again due to treatment ....or maybe treatment keeps you from having a second

transplant at all. I said i wont worry too much about this until time comes

________________________________

To: livercirrhosissupport

Sent: Wednesday, February 25, 2009 8:20:34 PM

Subject: Re: Penny

Hi Abijann,

I did shot 13 last night. Only 39 to go. I haven't really had any

headaches in quite a while now, thank goodness. My red blood cell

counts are creeping back up slowly as I continue getting the weekly

shots of Aranesp to stimulate the bone marrow to produce more red

blood cells.

I can't understand why they don't all start the treatment for

Hepatitis C after a transplant. The virus comes back faster and

stronger after transplant because of the immunosuppressant drugs we

have to take. Without treatment, the new liver will only last 2 to

10 years, depending on how fast it damages the liver. I have read

that post transplant patients sometimes have a harder time dealing

with the side effects of treatment, but I have been lucky so far in

that area. It angers me to think they won't start the treatment soon

after transplant. What is the point of getting a transplant if they

don't try to squash the virus from damaging the new liver? The

Hepatitis C virus circulates through the liver as soon as the new

liver is hooked up, and blood starts flowing through. I had a viral

load of 30,000 just days after my transplant, and inflammation in my

new liver on my first liver biopsy about 6 months after transplant.

My transplant hospital, UW Hospital in Madison, Wisconsin starts

treatment soon after the transplant.. They told me this at the

evaluation for the transplant that treatment had to be done, and if I

didn't want to do the treatment, I probably wouldn't have received a

transplant.

Penny

>

> My husband take 6...Ursodiol 300 mg a day. Even though they are

> generic...they are still very expensive.

>

> How is your treatment coming along? Sure hope your headaches are

> going away. You probably have each shot on a mark down list.

> What number shot are you on now? Is your cell counts still rising?

> It doesn't seem like they are giving too many people treatments

> after the transplant. A lady was asking a question about her

mother,

> who had had a transplant and is now in stage 3 again and they

> told her she would not live till next year. You would think the

> transplant team would of started her on this treatment right away.

> What is your opinion on this?

>

[Guest guest]

Ok. Thanks.

Penny

>

> to answer our last topic A,B. and C

>

>

>

>

>

[Guest guest]

They did talk about another transfusion, but I don't know yet what they will do.

I'll call my coordinator tomorrow if she doesn't call me first.

Penny

>

> The problem here is that we have no one else going through this to

> see how they react to the treatment. If we just had some way to

> compare it to others who have taken the treatment in the past...

> then we would know whether this might be a normal response to

> the therapy. I'm really concerned about your blood cell count

> dropping down. Are they talking about another transfusion, soon?

>

[Guest guest]

I don't think so. I've never been told that it is, so I don't think it is.

Penny

>

> Just one more question...Is your spleen enlarged still?

>

[Guest guest]

My coordinator called today and said I need another blood transfusion...another

two units. I asked her if I should stop taking the extra iron because my iron

levels are high and I know that is not good for the liver or for the treatment

to work its best. Of course, she said to stop taking it. My white blood cell

count is dropping now too so she was preparing a referral for my insurance

company to get Neupogen injections approved for me to help bring the white blood

cell count back up if they continue to fall. Then I'll be getting three shots a

week. Fun, fun, fun...lol.

The red and white blood cell counts falling is a normal side effect of this

treatment. Some people it doesn't happen to and some it does. My friend, Lori,

who did the treatment had all the flu-like side effects and weight loss that I

don't have, but she didn't have any problems with her blood counts like I'm

having.

Penny

> >

> > The problem here is that we have no one else going through this to

> > see how they react to the treatment. If we just had some way to

> > compare it to others who have taken the treatment in the past...

> > then we would know whether this might be a normal response to

> > the therapy. I'm really concerned about your blood cell count

> > dropping down. Are they talking about another transfusion, soon?

> >

>

[Guest guest]

I had to go to the hospital today to be typed for the transfusion which I will

get at 10:00 a.m. tomorrow. I hope I feel less tired and that the higher dose

of the Aranesp helps to keep them up this time so I don't have to feel so tired.

I hope when I need the other shot to keep the white blood cell count up my

insurance doesn't give us a hard time like they did with the Aranesp. I still

have 32 weeks to go.

Penny

>

> I pray that you will be able to keep your strength up.

> If the time would just go faster so that you can reach your goal...

> it would be great. I hope that the transfusion will help you feel

> much better and that the insurance doesn't give you more of a hard

> time. How many more weeks do you have to go?

>

[Guest guest]

Then energy back....what a promise.

Lots of hugs and kisses to everyone.

Lyncia

 

 

From: abijann <no_reply >

Subject: Penny

To: livercirrhosissupport

Date: Saturday, May 16, 2009, 10:13 AM

So glad to hear you are feeling better. Just wish it was closer

to the time when this treatment was completed. It will be

wonderful when you can look back on all this and have all your

energy back.

[Guest guest]

Thanks. I know I can't wait until it is over and I can have my energy back. I

hope the adjustment of the pills for the treatment help some too so I don't have

to keep getting blood transfusions.

Penny

>

> So glad to hear you are feeling better. Just wish it was closer

> to the time when this treatment was completed. It will be

> wonderful when you can look back on all this and have all your

> energy back.

>

[Guest guest]

I have often thought about this myself...I have questioned it with the

pharmacists and the only answer  we can figure at this point ,considering that

the drugs are both erythropoiesis stimulating agents, is  that maybe the aranesp

may have a slightly different molecular structure that they seem to think

benefits Penny more so then the Epogen. May be or not ...it is a good question

though...if i get the opportunity to explore more i will try to find out a more

definitive answer.

sandra

________________________________

From: abijann <no_reply >

To: livercirrhosissupport

Sent: Saturday, May 16, 2009 7:50:38 PM

Subject: Penny

I would really like to know the difference between the medication

you use and the Epogen they used for my husband. I was just wondering

if you would do better with it, in keeping your blood counts up.

[Guest guest]

Mechanism of Action / PharmacologyA) 1) 1)

Darbepoetin alfa (novel erythropoiesis-stimulating protein) is a

hyperglycosylated analogue of recombinant human erythropoietin (epoetin alfa)

(Joy, 2001a; Macdougall, 2000); (Egrie & Brown, 2001). It contains five N-linked

carbohydrate chains, which is two more than epoetin, imparting a higher sialic

acid content and molecular weight, and a greater negative charge (Egrie & Brown,

2001). Darbepoetin alfa is purified from a cell culture medium of a darbepoetin

alfa-expressing Chinese hamster ovary cell line (Prod Info ARANESP® IV,

subcutaneous injection, 2008; et al, 2001).

2) The enhanced sialic acid content of darbepoetin alfa results in slower plasma

clearance, a longer plasma half-life, and greater in vivo biologic activity

compared to epoetin alfa, enabling less frequent dosing (eg, once versus three

times weekly) (Macdougall, 2001; Anon, 2001). In animal models and humans, the

elimination half-life of darbepoetin alfa was up to 3-fold longer than that of

epoetin alfa (Macdougall, 2001).

3) Darbepoetin alfa has produced dose-dependent hematocrit increases in normal

mice when given either intravenously, subcutaneously, or intraperitoneally

(Egrie & Brown, 2001). In comparative studies in animals, the potency of

darbepoetin alfa was about 3.5-fold that of epoetin alfa with respect to

hematocrit increases when these agents were given three times weekly by any

route; administration of darbepoetin alfa once-weekly or every other week was

significantly more effective than epoetin alfa given in these dose frequencies

(Macdougall, 2000); (Egrie & Brown, 2001). Potency differences from animal

studies indicated that similar efficacy could be achieved (hematocrit increases)

with less frequent administration of darbepoetin alfa (Egrie & Brown, 2001).

The mechanism of stimulation of erythropoiesis by darbepoetin alfa is like that

of epoetin alfa; both agents bind to the erythropoietin receptor on erythroid

progenitor cells, stimulating production/differentiation of mature red cells

(Prod Info ARANESP® IV, subcutaneous injection, 2008; Macdougall, 2000; Joy,

2001a). Although the binding affinity of darbepoetin alfa is lower than that of

epoetin alfa or natural erythropoietin, this is offset by the longer half-life

of darbepoetin which affords greater in vivo biological activity (Egrie & Brown,

2001)(Macdougall, 2000).

PHARMACOLOGYMECHANISM OF ACTION

________________________________

From: abijann <no_reply >

To: livercirrhosissupport

Sent: Saturday, May 16, 2009 7:50:38 PM

Subject: Penny

I would really like to know the difference between the medication

you use and the Epogen they used for my husband. I was just wondering

if you would do better with it, in keeping your blood counts up.

[Guest guest]

Darbepoetin alfa is an erythropoiesis stimulating protein produced by

recombinant DNA technology. Darbepoetin alfa is closely related to

erythropoietin and stimulates erythropoiesis by the same mechanism, both agents

bind to progenitor stem cells stimulating the production/differentiation of red

blood cells .

 

i think from what i read is that aranesp (Darbepoetin) has a longer half life

________________________________

From: abijann <no_reply >

To: livercirrhosissupport

Sent: Saturday, May 16, 2009 7:50:38 PM

Subject: Penny

I would really like to know the difference between the medication

you use and the Epogen they used for my husband. I was just wondering

if you would do better with it, in keeping your blood counts up.

[Guest guest]

and then it may be this is what the Doc is use to using.

________________________________

To: livercirrhosissupport

Sent: Sunday, May 17, 2009 12:08:05 AM

Subject: Re: Penny

Darbepoetin alfa is an erythropoiesis stimulating protein produced by

recombinant DNA technology. Darbepoetin alfa is closely related to

erythropoietin and stimulates erythropoiesis by the same mechanism, both agents

bind to progenitor stem cells stimulating the production/differen tiation of red

blood cells .

 

i think from what i read is that aranesp (Darbepoetin) has a longer half life

____________ _________ _________ __

From: abijann <no_reply@yahoogroup s.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Saturday, May 16, 2009 7:50:38 PM

Subject: Penny

I would really like to know the difference between the medication

you use and the Epogen they used for my husband. I was just wondering

if you would do better with it, in keeping your blood counts up.