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Mike, i forgot the dosage for 180 lbs.I will have to look on my pegintron info

slip, but they gave me free rain over my tx they said as long as you can

maintain your labs with procritt or nupigen let us know what you want within

reason of course ,so what do you show as a standard dose of ribivirn for 180 lbs

ide like to see if they changed the dosing charts i dont remember the chart dose

i do remember doc saying this shit is gonna reack havock with your cbcs and to

use with caution cause if you blow your cbcs and get a bad infection tx is out

no matter where you stand and he was right so like i say its a balanceing act

and i was real careful with that crap made sure my labs were done 1 time a month

and i got so good i could tell when to back off the riba with no labs ,when i

got riba overload i could taste it and feel it ,felt real bad . Oh me and the

pooch are gonna wait till tomorrow but im gonna make the call tonight ,i still

hear that little voice saying dont do it shes still

fertil and subject to hear those terifying words ,im pregnant and its yours ,i

can deal with what ever but would rather not ,i love kids never grew up myself

..Maybe it would give me a new outlook on life .

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Hi Mike,

My wbc was 1.5 when they first did blood tests, and

that was 6 years before I did treatment. They didn't

want me to do treatment until my platelets were at

least 100,000, and the pesky critters stayed in the

70-80,000 range for that long. Finally, for some

reason, they went up to 1000,000 and I leaped into the

joys of treatment. The doc wasn't too worried about my

wbc, said I was not considered officially

" immunocompromised " until they went below 1.0.

Everyone I've talked to said they hardly ever got a

cold or flu when on treatment - all that extra

interferon buzzin around killed off any competing

bugs. Which was true for me - I felt like all sorts of

hell, but I never got a cold or flu while on

treatment.

When my blood counts went way off my doc would drop

the Riba dose, then immediately start building it back

up, slowly. And the counts would stay all right. But I

never could manage more than 800mg of Riba when they

wanted me on 1200 mg. I just didn't tolerate it too

well. I might try it again if they'd put me in a coma

first!

Thanks for the monkey hug, I feel the peace!

Michele

--- mike <hope_chem_survive@...> wrote:

> Michele,

>

> That sounds awful. Even I feel sorry to see you

> suffer like that and

> I have no human feelings at all just ask my wife.

>

> Doc says I'm not quite bad enough for blood med of

> any kind. My wbc

> 1.7 count worries me I don't want to get another

> cold and have a dose

> reduction. Lost 80% of the wbc's I started with.

> Anemia is not that

> bad you just adjust to it after a few months.

>

> Cutting back my riba 8% to a reasonable but still

> very high dose

> seems smart to me what's the point of havin a real

> high dose if you

> get severly reduced on adverse effect.

>

> Nurse though I looked like crap this week and wanted

> the doc to start

> me right away on rbc and wbc meds. She remembered

> me from two months

> ago and couldn't hardly believe I was the same guy

> with all the

> weight loss. Thank goodness it's slowing.

>

> Mali offers you an hug with her Monkey. She says

> Monk goood. Which

> means may the healing powers of my Monkey permiate

> you being and

> bring you inner peace.

>

> :)

>

> Mike

>

>

>

> >

> > HEY Mike and :

> >

> > They did two bone marrow biopsies on me when they

> were

> > trying to diagnose what I had, and my bone marrow

> was

> > doing really well, putting out plenty of cells.

> What

> > happened to make my plateleet and white blood

> cells so

> > low was my spleen was enlarged from backed-up

> blood

> > that couldn't get through my scarred liver, and

> the

> > enlarged spleen became more active and killed the

> > cells off. They called it Pancytopenia. The Riba

> did

> > lower my red blood count, though, and I had to

> take a

> > Procrit every week.

> > Just telling you how it was for me. . .

> > Michele

> >

> >

> >

> >

> > > Ha Mike ,the bone marrow surpression is a now

> thing

> > > ya know the bone marrow makes your reds whites

> and a

> > > host of other crap its not being eaten away it

> just

> > > kinda gets lazy.About 1000 mgs was all i could

> > > take.Any more surpression and a tx stop could be

> in

> > > future its a balanceing game.At group in MD that

> is

> > > the main complaint that riba is kicking my butt

> or

> > > messing up my cbc .>

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> > __________________________________________

> > DSL – Something to write home about.

> > Just $16.99/mo. or less.

> > dsl.

> >

>

>

>

>

>

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

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Sally since she started her own little group she is much more complyant .Give

the kid a break she just found out shes stage 4 at 20 yrs thats a shock at any

age but 20 shes still a kid . I have tried to imagin myself at 20 being told

that and i cant as of yet but im working on it . I got a feeling before this

exersize is over i el be eating tranks and drinking liquor .Allways was a

softie even over that iron exterior.

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,

I've seen a couple different break points used in studies and not

sure of the exact official guideline but think it's right around

187lbs. More than that 1,200 less than that 1,000. When you fell

below 143 I think you should have been cut to 800mg. Based on this

study with the break points shown below. Based on this study

everyone was under 275 and anyone over 231 was getting 1,400.

Riba 800 800 1000 1000 1200 1200 1400 1400

Kilos 55 64 65 85 85 105 105 125

riba mg/kg 14.5 12.5 15.38 11.78 14.12 11.44 13.33 11.20

Lbs 121 141 143 187 187 231 231 275

Before they did weight dosing the higher the weight the worse the

odds of svr. With this stepped weight dosing which is imperfect and

not tru weight dosing at least heavey people have a chance.

Mike

>

> Mike, i forgot the dosage for 180 lbs.I will have to look on my

pegintron info slip, but they gave me free rain over my tx they said

as long as you can maintain your labs with procritt or nupigen let

us know what you want within reason of course ,so what do you show

as a standard dose of ribivirn for 180 lbs ide like to see if they

changed the dosing charts i dont remember the chart dose i do

remember doc saying this shit is gonna reack havock with your cbcs

and to use with caution cause if you blow your cbcs and get a bad

infection tx is out no matter where you stand and he was right so

like i say its a balanceing act and i was real careful with that crap

made sure my labs were done 1 time a month and i got so good i could

tell when to back off the riba with no labs ,when i got riba overload

i could taste it and feel it ,felt real bad . Oh me and the pooch

are gonna wait till tomorrow but im gonna make the call tonight ,i

still hear that little voice saying dont do it shes still

> fertil and subject to hear those terifying words ,im pregnant and

its yours ,i can deal with what ever but would rather not ,i love

kids never grew up myself .Maybe it would give me a new outlook on

life .

>

>

>

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,

Give it a break!

Sal

RE: Status

Sally since she started her own little group she is much more complyant

..Give the kid a break she just found out shes stage 4 at 20 yrs thats a

shock at any age but 20 shes still a kid . I have tried to imagin myself at

20 being told that and i cant as of yet but im working on it . I got a

feeling before this exersize is over i el be eating tranks and drinking

liquor .Allways was a softie even over that iron exterior.

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Michele,

I'm gonna change my name to M.r Perfect Health. maybe get my pic on

one of them health magazines and do an interview. Title: " HEP C

Patient So Healthy He Maintains 20% of Normal WBC. " Tell us Mr. Mike

how do you maintain that healthy glow during TX. Well Bob I find it

helps to eat healthy, OD on Riba and beat the wife.

You and Sally make me just shudder in fear with your horror story

tales. I'm gonna save that one for Halloween when Mali's 21 and hard

to scare.

I started TX with a viral cold and it went bacterial have xrays last

two months. Never seems to get much better or much worse but I hate

the threat to my TX. Think a wee cut back in riba for a few weeks

may keep the wbc and rbc from getting bad and help me maintain

weight. At this point any more weight loss is not improving health.

The riba dose is just way too far out of wack.

Peace and Monkey Love

Mike

> > >

> > > HEY Mike and :

> > >

> > > They did two bone marrow biopsies on me when they

> > were

> > > trying to diagnose what I had, and my bone marrow

> > was

> > > doing really well, putting out plenty of cells.

> > What

> > > happened to make my plateleet and white blood

> > cells so

> > > low was my spleen was enlarged from backed-up

> > blood

> > > that couldn't get through my scarred liver, and

> > the

> > > enlarged spleen became more active and killed the

> > > cells off. They called it Pancytopenia. The Riba

> > did

> > > lower my red blood count, though, and I had to

> > take a

> > > Procrit every week.

> > > Just telling you how it was for me. . .

> > > Michele

> > >

> > >

> > >

> > >

> > > > Ha Mike ,the bone marrow surpression is a now

> > thing

> > > > ya know the bone marrow makes your reds whites

> > and a

> > > > host of other crap its not being eaten away it

> > just

> > > > kinda gets lazy.About 1000 mgs was all i could

> > > > take.Any more surpression and a tx stop could be

> > in

> > > > future its a balanceing game.At group in MD that

> > is

> > > > the main complaint that riba is kicking my butt

> > or

> > > > messing up my cbc .>

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > > __________________________________________

> > > DSL – Something to write home about.

> > > Just $16.99/mo. or less.

> > > dsl.

> > >

> >

> >

> >

> >

> >

>

>

>

>

> __________________________________________

> DSL – Something to write home about.

> Just $16.99/mo. or less.

> dsl.

>

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,

Don't you already need tranks and booz?

Mike

>

> Sally since she started her own little group she is much more

complyant .Give the kid a break she just found out shes stage 4 at 20

yrs thats a shock at any age but 20 shes still a kid . I have tried

to imagin myself at 20 being told that and i cant as of yet but im

working on it . I got a feeling before this exersize is over i el be

eating tranks and drinking liquor .Allways was a softie even over

that iron exterior.

>

>

>

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How long you been on this Mike . I managed to maintain an av weight of 160

through most of my tx about the last 5, 6, months i just stoped eating and

drank beer most of the time thats when i lost that 25 30 lbs i was skin and

bones people used to say where you commin from wwII a nazi camp and ide say na

smoking crack sometimes i would stroll up to the bar some ass would always have

something to say and so would i ,almost came to blows a couple times and i know

ida got my ass kicked good but i toldem hay i got hcv and hiv any blood

exchanges and , well that stoped any fights, hell let em come now i got a 50 /50

i still got a few quick moves but would rather walk then go to jail but when all

elese fails what can ya do carry the sam colt equalizer , ever hear that saying

god created man sam colt made em equal . my dad had a night club right outside

of FT Mead MD and i was friends with alot of guys working for pop when they were

not on duty, then they would get the call to go to nam we

were all close to the same age doing what boys do we would go to the range at

the fort most of my friends came back allright but some who saw real action

didnt come back the same i guess they got a real look at hell i saw some

pictures and movies i will never forget

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Mike, tranks, booz, that and more , why hell i might put my chemistry set

togther for a little recreational fun and thats just starters right now im

staring at klonipin xanax hydro morphine darvon tramadol the only thing missing

is a beer to chase em with but you know what happins if i make that coctail ,it

brings on that disease we talked about the F its ,could last for a week ,just

about any time is a good time to catch the F its ,i had a nasty case of that

days back ,yep its just one of those things that seems to hit when expected.

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Yeah, the docs just hate it when we fool around with

the meds ourselves, but hell, it's us putting this

crap down our throats every day, not them.

I think every MD who writes prescriptions for this

treatment ought to take 6 months of it. HAH!

Michele

--- mike <hope_chem_survive@...> wrote:

> Michele,

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

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Mike it should say on the product info slip you get with your meds, ya might

need a mag glass to see but its their ,that riba is usually talored to

individual needs because it effects so many people different i mean look what i

took from 180 to130 same dose but it was starting to blow my whites at the end

of tx it had blown my reds 8,9 months in procritt 2.7 red cell ct thats why i

ask how Long you been on tx , ya see how you lost your whites i lost my reds

this stuff has to be talored if you can maintain that hi riba dose great but the

majority cant it blows their blood work thats always been the problem with the

riba ,1 person i know bottemed out their whites and lost part of a hand to flesh

eating strepp another a porton of butt cheak to strepp all needing plastic work

and that strepp is not easy to stop I will pull my slip and see what was

recommended in2002 it probably hasent changed.

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,

I'm about 4.5 months down and 6.5 months to go. Looks like my wbc

and rbc drops are stabelizing at this point at the not too critical

level. Yeha, I don't like the lung infection which is probably strep

and that's partly why I'm gonna back the riba from 15.7mg/kg to a

reasonable but still high 14.4mg/kg. Better to have a nice high

sustanable dose than to roll the dice especially since I had no HCV

detected at month 3. Next test is also a HCV pcr test so we shall

see if it holds at undetectable. Don't want no human flesh eating

bacteria infection.

Some studies conclude that the max riba benefit is at 13mg/kg others

say higher is always better. But it is certain that high weight

based doses often result in reductions and adverse events. I seem to

do ok on the high riba except for being totally nuts and having

insomnia. Like Michele says who's gonna make that decision me or my

Doc who never even figured out my weight based dose and obviously

even forgot what the drug rep told him about cutting back the dose.

LOL

You were on a way high dose once you lost the weight. Like you say

it's a tight rope have to balance the desire for SVR with enough

caution to stay out of the hospital and complete TX. Lean too far

either way and it's a long way down. All in all I feel real good

physically except for me personal life going to heck.

Mike

>

> Mike it should say on the product info slip you get with your meds,

ya might need a mag glass to see but its their ,that riba is usually

talored to individual needs because it effects so many people

different i mean look what i took from 180 to130 same dose but it was

starting to blow my whites at the end of tx it had blown my reds 8,9

months in procritt 2.7 red cell ct thats why i ask how Long you been

on tx , ya see how you lost your whites i lost my reds this stuff

has to be talored if you can maintain that hi riba dose great but the

majority cant it blows their blood work thats always been the problem

with the riba ,1 person i know bottemed out their whites and lost

part of a hand to flesh eating strepp another a porton of butt cheak

to strepp all needing plastic work and that strepp is not easy to

stop I will pull my slip and see what was recommended in2002 it

probably hasent changed.

>

>

>

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Mike ,ya gotta keep those whites up cause if you get sick im tellin ya the might

pull your tx i have seen it happin and then their was the sickness to deal with

kept some in hosp for weeks .bad shit ,when they were released they still had

problems to deal with .

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Mike,

You're aware of the interstitial bronchitis that's a known side of the tx,

right?

Sally

Re: Status

,

I'm about 4.5 months down and 6.5 months to go. Looks like my wbc

and rbc drops are stabelizing at this point at the not too critical

level. Yeha, I don't like the lung infection which is probably strep

and that's partly why I'm gonna back the riba from 15.7mg/kg to a

reasonable but still high 14.4mg/kg. Better to have a nice high

sustanable dose than to roll the dice especially since I had no HCV

detected at month 3. Next test is also a HCV pcr test so we shall

see if it holds at undetectable. Don't want no human flesh eating

bacteria infection.

Some studies conclude that the max riba benefit is at 13mg/kg others

say higher is always better. But it is certain that high weight

based doses often result in reductions and adverse events. I seem to

do ok on the high riba except for being totally nuts and having

insomnia. Like Michele says who's gonna make that decision me or my

Doc who never even figured out my weight based dose and obviously

even forgot what the drug rep told him about cutting back the dose.

LOL

You were on a way high dose once you lost the weight. Like you say

it's a tight rope have to balance the desire for SVR with enough

caution to stay out of the hospital and complete TX. Lean too far

either way and it's a long way down. All in all I feel real good

physically except for me personal life going to heck.

Mike

>

> Mike it should say on the product info slip you get with your meds,

ya might need a mag glass to see but its their ,that riba is usually

talored to individual needs because it effects so many people

different i mean look what i took from 180 to130 same dose but it was

starting to blow my whites at the end of tx it had blown my reds 8,9

months in procritt 2.7 red cell ct thats why i ask how Long you been

on tx , ya see how you lost your whites i lost my reds this stuff

has to be talored if you can maintain that hi riba dose great but the

majority cant it blows their blood work thats always been the problem

with the riba ,1 person i know bottemed out their whites and lost

part of a hand to flesh eating strepp another a porton of butt cheak

to strepp all needing plastic work and that strepp is not easy to

stop I will pull my slip and see what was recommended in2002 it

probably hasent changed.

>

>

>

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Michele,

I heartily agree! And have a few sides. I'm worried about Mike's lung

infection. I don't think I'll start the tx before the colonoscopy. Somehow

that seems like just TOO much torture all at one time.

And my PCP is worried about my cholesterol levels. Pshaw! I should live so

long! I'm gonna have her test this thing on my leg for lichen planus.

Sally

Re: Status

Yeah, the docs just hate it when we fool around with

the meds ourselves, but hell, it's us putting this

crap down our throats every day, not them.

I think every MD who writes prescriptions for this

treatment ought to take 6 months of it. HAH!

Michele

--- mike <hope_chem_survive@...> wrote:

> Michele,

__________________________________________

DSL - Something to write home about.

Just $16.99/mo. or less.

dsl.

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Share on other sites

Sally,

Yeha, what I got the GP calls a deep lung wheeze which in his words

is " bad news " and needs to be watched. It almost went away on a five

day antibiotic course but lingered and then got a bit worse again but

not a bad as before. We don't want to use lots of antibiotics when

on TX I think for some reason it weakens the immune system and some

folks think it helps the viral buggs grow.

Mike

> >

> > Mike it should say on the product info slip you get with your

meds,

> ya might need a mag glass to see but its their ,that riba is

usually

> talored to individual needs because it effects so many people

> different i mean look what i took from 180 to130 same dose but it

was

> starting to blow my whites at the end of tx it had blown my reds

8,9

> months in procritt 2.7 red cell ct thats why i ask how Long you

been

> on tx , ya see how you lost your whites i lost my reds this stuff

> has to be talored if you can maintain that hi riba dose great but

the

> majority cant it blows their blood work thats always been the

problem

> with the riba ,1 person i know bottemed out their whites and lost

> part of a hand to flesh eating strepp another a porton of butt

cheak

> to strepp all needing plastic work and that strepp is not easy to

> stop I will pull my slip and see what was recommended in2002 it

> probably hasent changed.

> >

> >

> >

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  • 6 months later...
  • 6 months later...

: You might be famous!!! Gee a paper on you--- I am sure you will be happy just to be free of the little bugs. Hope the New Year brings you a full recovery. gordonjb50192@... wrote: Hi - some of you might be interested in how my combination CLL and babesiosis (that nasty little blood parasite that creates anemia, just like CLL) is doing. After struggling with the babesia for a year and a half

(nothing would kill them as the immune system wasn't doing it's thing), we have now tried to go off the babesia meds. Off now for over a month, and the little buggers have not yet returned. Fiercely crossing all my fingers and toes!!! The strange thing is that I continue to hemolyze slightly, so something is still doing a number on my red cells. Is it the babesiosis? Is it the CLL? Is it AIHA (autoimmune anemia)? The docs are waiting for this all to become clear, so they can write a paper :-) Best to all,

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  • 2 years later...
Guest guest

Dr bumped me to 600mg every other day 4 days and 400mg the others of gleevec

in jan. this was to get to zero. Today was told if new test is 0 stay at same

dosage. If not 0 go to 600mg every day. She believes possibility of resistance

to gleevec building.

I do what I'm told but I have to work and the meds drain me bad.

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