News Stories and Other Posts

[TnHepGuy_]

<a href="http://www.natap.org/2006/HCV/011206_02.htm">Viral Eradication of HCV</a>

<a href="http://www.natap.org/2006/HCV/011206_01.htm">
CHILDHOOD HEPATITIS C VIRUS INFECTION</a>

<a href="http://www.natap.org/2006/HCV/011106_02.htm">Lipids are Lower in Chronic HCV</a>

<a href="http://www.natap.org/2006/HCV/011106_01.htm">The challenge of progressive hepatitis C following liver transplantation</a>

<a href="http://www.hcvadvocate.org/news/newsRev/2005/TopTen_2005.html">Top Eleven News Stories of 2005 (updated)</a>

<a href="http://www.blackwell-synergy.com/doi/abs/10.1111/j.1478-3231.2005.01181.x">Probability of liver cancer and survival in HCV-related or alcoholic-decompensated cirrhosis. A study of 377 patients</a>

<a href="http://www.gastrojournal.org/article/PIIS0016508505016367/abstract?browse_volume=130&issue_key=TOC%40%40JOURNALSNOSUPP%40YGAST%400130%400001&issue_preview=no&select1=no&select1=no&start=&startpage=&vol=">Gene Expression Patterns That Correlate With Hepatitis C and Early Progression to Fibrosis in Liver Transplant Recipients</a>

[GoofyDad]

Cuteus: Yup - I got the six pack abs. Have you seen the swollen round and squat 'POM' pommegranate juice bottles? That's me.A sixer of thse puppies.

FLguy - Yeah - I figured you would call me out. Protocol calls for 800 RIBA - I've been doing 1,200.

Hey anybody other than NYgirl do more than 60,000 units of procrit? My doc has never gone higher.... anyone else? Could it be different for the female persuation for some reason?

Where the heck is forsee? Anyone seen her?

[MrsOckert]

Hey there dyce.

I have ringing in the ears, too.  It started at week 11 or 12 and it still going strong week 14.  I thought it might be related to the anemia, but it's not.  Just another annoying SX.

I'm hoping in a few weeks it will clear up and I can go on to something new.  :)

[azgrl]

Hey there goof. I wish you the best!!  Remember we know our bodies better than anyone.  Your attitude sure plays a lot in your ability to fight this thing.

Just remember I am always in your corner "clapping" for you.

deb in az

[mikesimon]

I just want to wish you the very best. Good luck. Mike

[NYgirl]

BBoy

I am AMAZED that at 9.6 you held up so well! It just goes along with what I said all along - with your positive attitude your brain just overwhelmed everything and kept you going!  Your attitude...has been VITAL to your SUCCESS!  I am so glad your doc is on the ball and got that Procrit in to you.  I would not be surprised if you do like me and do the twice a week regimen...after all what is the sense of being a twin if not! :)

GoofyDude

Your heart is so BIG its no wonder this is going on.  You've spent more time trying to keep us all UP in the stratosphere...and you have!  

I want you to know you are getting so MANY great thoughts and prayers on the situation...know that you are loved and appreciate ok dude.

DT

[strator]

amommy -wasn't this the first one you were doing by yourself also. How'd that go.
And hey cmon were friends here-the truth- you gonna let your kid play with Elmo and the blocks too. I remember those days, might be just the therapy for tx.

Cuteus et all; Just a quick follw up. Noticed some posts recently that mentioned the Xmas incident. It's been put to bed.
A week after xmas I had 'the talk' w/my sister about it(that was difficult). Few days later she called to ask if my son would go out to dinner with her and my brotherinlaw the next night. I said well I'll ask him and get back to you, later confirmed it. That night when he was going to bed he said... do I have to go..it's gonna be  awful awkward. I took the chance to mention it might be a great opportunity to learn about dealing with life, your rigt to stand up, family, maybe forgiveness and all. Left it up to him. He went, came home, said the restautrant was pretty cool, that vhis uncle did apologise on the way home. A couple of days ago he said, maybe next time they invite him out to dinner, he'll ask if they like Chinese food.
Life is good,
Don

[FlGuy]

So, was the dose of 1200 an 'upped' amount in the first place?  I would have thought that the regimen would be 800/day, unless you are a Big Goof but your tissue posts suggests other.  If you have been at +50% all along cutting back a tab may be the thing.

[FlGuy]

If IFN is the killer and riba inhibits replication and you were RVR then it seems the back-off of riba - for other health considerations does not seem like a move that is very detrimental to HCV tx for a 3a. This combo of stuff (IFN, Riba, EPO, Neup, Ambien) has got to put bodies in a tenuous situation and any relief you can give your body, without significant breakthru risk, seems appropriate to me.  But, I'm a belt and suspenders guy anyway.
Good luck Goof.

[amommy]

Good to see you around here!  You always have such a thoughtful outlook.  It's nice to see.  Hope you have a good day today!  I am on hangover day after my 3rd shot.  Seems much less than last week.  I'm thrilled about that, but can't wait for a nap! Have a good day strator

Goof- just read all that business about your counts.  You take it easy there mister!  YIKES.  You are a true fighter.

beagle- how are you doing today?  hope you can get that anemia under control with the procrit.  Keeping you in my thoughts

Good morning everyone!  Wishing everyone a great day today and a side free weekend :)  I should be vacuuming, but instead, I will spend the morning reading posts around here in between playing with elmo and blocks!

[strator]

Not to worry. Sometimes I confuse my son's age with a 6yro too. Forget he's 14 and will look both ways wihout being told before crossing the street. Other days I know he's 14, look at him, and BE SURE to tell him to look both ways. Totally baffled by the way kids of any age sometimes turn around and have a way of being the one's that finally reach us with life lessons we've maybe even paid big bucks to learn but been struggling to grasp all our life.Some days on tx or not, he looks at me shakin his head and wonders if I even know enough to look both ways...THEN there's those other days.

cuteus thanks for the response on the cal/mag. Worth a definite try. Get's scary some nights when I think the muscles 'll never uncramp.
Happy, happy, joy,joy,
Don

[cuteus]

goof, oops! I think I confused your son's age with Don's, who seems to be a wise teen.  6 is too young to discuss medical uncertainties, no matter how smart.  With some, it is in as needed basis.  It is good you mentioned preparing your body physically, before tx,  as we were going to run a marathon.  This race lasts a lot longer than 26 miles.  COming into tx physically fit might have an impact on how the sides are felt.  
If only they will do a research study on sides and predictors for some of them, maybe we will take exercise more seriously.  It looks like your hgb is responding for the better with the change.  I can't remember if you are still doing some form of exercise, it sounds like you might be. It is a relief that your body has adjusted so well.

I wondered how much our children noticed about us while we were on tx, and timidly asked my teen, after tx, if she ever was worried about me during tx.  She said she took her clue from me and my everday behavior, only worried when I had to ask for a special pass at Six Flags because I was ready to pass out.  The irritability and impatience, I guess was no different to her, since it is usually manifested at the morons on the road, and still is.
stay well

[jmjm530]

I had a similar down-up-down time curve with my hgb and Procrit but not as dramatic of course. On analysis, what I found was about a six-week delay to peak or trough when changing Procrit. So in hindsight, perhaps the 40,000 units/wk was simply not enough and hopefully in another three weeks you'll be high 10 or low 11's where you probably should have been in the first place. I'm back on a 6-7 day schedule (40,000 units) and got into my own trouble when I stretched schedule to 10 days. Just something for many on Procrit to consider -- the reaction to dosage change can be quite slow so you really have to stay ahead of the ball.

-- Jim

[GoofyDad]

I started tx at hgb 15.5. I dropped in the first few weeks & went on procrit 40,000 every 9 days. That held me for 6 weeks or so, then I started a slide. I went to 40,000 every 5 days, and the slide ended in the low sevens and has headed up for 3 weeks (15-17). Now at 9.1.

[can-do-man]

They gave me a echocardiogram. Wouldn't that be just as good? I know there was nothing to it. But i don't know the diff. from that and a stress test.

[cuteus]

I thought the numbers of death calculated for HCV was rather low, as well as the expenses per patient, I don't think HCV is listed as the direct cause in many death certificates.
They did clarify that they believe the numbers of deaths from HIV will be lower once they get missing info from NIH. I am sure funding to the digestive diseases area has to be including HCV. Thanks for balancing.

[andyarundel]

I think all other conditions are listed separately for HCV, including digestive diseases. I also think HIV monies were lumped together for political purposes. HIV is the only disease the NIH lists a cumulative total for.

[DoubleDose]

The 'viral eradication' link (above) is an encouraging study showing continuing loss of certain HCV antibodies.  It could possibly support the idea of long term viral eradication if it is valid, and if the other HCV antibodies not studied also decline over long periods of time.  I think a recent Japanese study reflected these findings, but also demonstrated a lack of significant antibody decline in one specific HCV antibody.  As in this study, several antibodies seemed to decline, and in some cases disappear.  Maybe a good omen????   Time will tell.  I like the trend though.

DoubleDose

[GoofyDad]

Well just had a nice chat with the doc. He said had he known about my earlier hgb situation (lab mix up), he would have had to cut me off tx. As it is, he wants to drop me from 1,200 to 1,000 (one riba), but we agreed I could keep at dose if I'm willing to accept the risks. I asked about a stress test, and he says I've already had it by staying active with hgb in the low 7's - and since I'm still here - I passed! Hooray!

Say's any predisposition to heart failure, and it might well have been sleepy time for Goofy. OK! I've got a tried and proven ticker - now it needs a matching liver and I'm good to go.  

We're planning to stop at 24 weeks (3a, early stage 4, 4 week RVR) - he and his colleages don't feel the reward of possible fibrosis reduction is worth the risk and impact of additional meds.  

He's really cool. Say's he's at risk now should I keel over. Says they'll ask what he was thinking not to dose reduce under these conditions. But he's willing to let me go on. I feel I've already survived the worst -  my hgb is about 2 grams above where it was a month ago - so we'll plug on and hope for the best. One little down-tick though and I'll be flushing ribas. Wish me luck.

[Mister beagle bailey]

thanks, my viral load at start was a little over 318,000.  Sun. will be shot #3 so they may do my PCR early. Like I posted above , I felt great the last 2 days and by all accounts I should  not.  Even the Dr. is amazed.  Thanks again for all your positive vibs.

Be well,

  BB

[cuteus]

goof, one riba can't be a big deal at this point, what shot are you on? they had  me on 800mg for months because they forgot to increase it. The fact that your ticker made it so far, is no guarantee it can take any more beating. If you have a good health plan, getting a stress test is not a bad idea, since we need a baseline at this age anyway.  You have a sweetie of a heart, don't overwork it.  I would take the lower riba if I was past the 12 wk mark.  
How worried are you at this point? Do you discuss options with your son at all?
I wish you a good outcome, regardless of personal feelings, I am impressed you can even muster the strength to type, you have some amazing body! (not referring to a six pack look, you know). not that you don't have it for all I know.  Please reconsider the lowering of the riba monster.

[jmjm530]

Tough decision. Except for a week at 1000 mg/day, I've stayed with 1200 riba even though my doc said 1000 is all I needed. However, I didn't have anything near your hgb drop, and if I did not sure my ticker could handle it given my cardio family history.

In any event, 24-weeks sounds like a good compromise plan -- not too short, not too long, and given your genotype and rvr, the oddsmakers say you should be singing SVR in the shower soon.

Also, keep in mind that many geno 2's are only treated with 800 mg/day riba as opposed to higher levels for geno 1's. And in spite of the lower levels their SVR rates are still excellent.

Regarding the stress test, be careful what you ask for because as its name suggests it *stresses* the heart.

I had a thallium stress test pre-tx, but would be hesitant now because of my lower hgb -- unless, of course my doc gave me compelling reasons to have one.

Do you see a cardiologist? I was put on the drug Cozaar for high blood pressure during tx but it also seems to have somewhst of a protective effect on the heart, and as another bonus, as soon as I started taking it my irregular beats went away.  Cozaar is part of a new category of drugs called called angiotensin II receptor antagonists. From HealthSquare.com -- "It works in part, by preventing the hormone angiotensin II from constricting the blood vessels, which tends to raise blood pressure."

Don't know if something like this would add another layer of protection or not in your case but maybe your doctor might.

All the best moving forward.

-- Jim

[cuteus]

maybe they can do a biweekly PCR to see how your viral load is dropping, instead of the 12 wk PCR, that way you can decide whether you need the full 24 wks. In your case it is definetely a plus to try and shorten tx if possible.
sending a million positive thoughts about the anemia, and as many negative thoughts for the VL.
be well

[strator]

Goof the Lionheart -
You Sir have one of those hearts that one associates with Knights of Yore: Chivlary, Courage, Compassion, Wisdom that sparkles throughout your humorous reflections on life, plumbing, and well...an obvious interest in the plights of Fair Maidens.
May your physical opponents digress from your path and be humbled as you battle through.

That said- be careful Goofdude. Sounds like your doc ahs some deserved confidence in ya too.

Mr. B  Glad your faring well with the  sx. I don't know how any of ya deal with anemia of any sort. Glad the doc jumped on it. You're a great voice around here.

Anyone have any thoughts on calcium and magnesium for charley horses. Was at a gathering today  when I jumped upright with a bad one in back of thigh. Two of my elderly aunts said they suffered with em for years and now swear by the calcium/magnesium treatment. Wondering how that may mix with hep and meds.

Wellness and light sx to All,
Don

[dyce]

Ice, How are you today?Is your hgb,and wbc rising yet?Have they been able to determine if the pegasy is what caused it to drop?Glad to hear from you .

Goofey I never talked to you before but I've read your post and I like your attitude.I have to give you a lot of credit,wanting to continue tx without lowering the riba!Man your brave.I don't know if I could handle that!Maybe you should get the stress test like Cuteous said.

Good luck my friend
Dyce