had bx thurs got results today

[azgrl]

Well I finally had the bx on thurs.  the doc just called and said stage 1 grade 1.  Not the greateest news but certainly not the worst.  We are going to start treatment as soon as we rule out any gallbladder issues.  We were going to start tx nov 8th but now I keep having these "attacks" that may be the gallbladder which would have to come out....when it rains it pours I guess

by the way what did the fish say when he ran into a wall?



....damn........

hahahahaha

[painintheside]

Congrats! That is great news (your stage and grade). You should be celebrating....better to have faulty gallbladder than a stage 4....right? Anyway, glad you had it done and don't sweat the small stuff.

Sincerely,
Dana

[Tallblonde]

What do you mean "not the greatest news?"  Heck, Stage 1, Grade 1 is worth jumping up and down about!  There's so few things on this HCV journey to celebrate, so don't pass up the opportunity to recognize and rejoice when something good actually does happen.

Well, at least I'm happy for you.  Congratulations on your fabulous news.

Susan

[suzieq2]

wonderful news! Mine started out with pnuemonia (pneumonia) and gallbladder removal and HCV 1b. My biopsy was stage two. 36 weeks of treatment, ultrasound came back unremarkable. Damage reversed!!!!

[chellski]

az - i think 1/1 is almost the best news you could get after a biopsy, but like the cheverolet said - damage is damage - we do have this virus...........good luck to you on your road to svr!
michelle

this lady got hit by a taxi cab and she was laying in the street and the cab driver yelled out his window.."hey lady! watch out!"
and she said "why, you coming back??"

[go-girl]

Your results aren't urgent for tx,from everything I've read here, you can afford to wait for better things. In a couple of years there are less harsher meds going to be available and good possibility better success rate,  if it were me I would wait. I would certainly get your gal blader attended to and get it out of the way, good luck

[fresnoborn]

Can you tell me how you get information about when new treatments are coming? i'm just curious as to how you know this wonderful news.
1b 13wk on tx
stage2/2

[painintheside]

Hello,
I think you know where I stand on tx. I was told this doesn't progress fast but here I am 33 with cirrhosis. I know you want to treat right away and I say go for it. Better to treat then to take a chance. Thats my opinion! I know you think, as I do, get this thing outta me!

[friole]

hey, I'm with you - damage is damage.  Something is happening down there - inflamation (inflammation) and scarring and it ain't pretty.  I am grade 1, stage 1 too and decided to treat. (I am 1a and on #14).  I am glad you went ahead and got the bx so you know where you stand.  It may help with decisions later.  


What do you call a fish with no eye?


FSH

[Forseegood]

Hi, I mostly agree w/ everyone because they all have valid points to treat or not treat with a low biopsy score. Although I don't quite agree w/ someone here in terms of how long it will take for certain treatments, like the Vertex product and a few others to come to market, way less than that, more like 3 years if fast tracked, and it looks like they will be if they keep getting such good results. Dr. Schiff out of Miami and my own doctor at Cedars think this is more like the timeframe. We could also get on the various trials of these drugs far sooner than that.

And they won't all be used with current treatment - but even if they were used with current treatment, the vertex product for example, is clearing at a really high rate, so perhaps using this drug alongside would drive up your chances of clearence, maybe a lot. (That's my bugaboo, 50% isn't great odds for me at least) Also they are not only working on drugs per se, but other methodologies to deal with this disease.

They are also working on ways to better know who will be able to clear and who won't with current modalities. There are a lot of things in the works. Sounds like you are going for it, I applaud you in this, whatever you want to do. Just giving you some other takes.

Also, a hepatologist told me that if you were to biopsy a person who was hep c free and in their early 50's, there could be a good chance they might biopsy at a 1 just from the normal wear and tear of life, maybe a little drinking, some pain meds, etc. A 1 biopsy grade is not bad at all, at least in these terms.

[johnisme]

Just wanted to add that i agree with forseegood. I have also been told 3 yrs, with trials much sooner. Best of luck to you.

John

[go-girl]

The site falcon mentioned is "hcvadvocate.com" which is informative. have a friend in a suday "albuferon" injects every two wks is, she is geno 1 stage 2 has only begun 2 months or so ago, will see how she does. I have gotten info from this forum reading posts, Jim seems to keep up on whats the latest, others as well. Nothing is a given of course, also depends on your age, I'm well past that at 65 I don't have much choice and @ stage 3, geno 1, I will be starting tx soon. Does anybody know what damage tx can do to ones kidney, I know two people with hep c that tx'd five & six years ago, their kidneys shut down and they have passed, my friend last Oct. Its possible it has nothing to do with tx but its also possible that it does?????????

[GoofyDad]

That's great news. Don't dwell on then gall bladder, take time to enjoy the liver info and then see what develops.

Where do fish retire?

river phoenix

[nyhepc]

sorry to butt in on a thread, but there were no spots open.
we have talked about platelets before, just wanted to be sure i have facts straight.  decrease is caused by the interferon and neupogen may raise them a little, right?
just a review...taken off tx twice for drop in blood counts. restarted 2 weeks ago on peg 90 and copeg 400, neupogen 150mg twice weekly and meds will be increased if labs stay good. had cbc drawn yesterday, everything looks ok except the platelets. dropped from 108 to 82 in a week. i know 82 isn't serious, more concerned about the size of the drop in a short time.

[snook_man]

There are rules at this forum, in which EVERYONE must follow. You pasted an entire article, which is COPYWRITED, and that is not allowed.

Also, glad to see you know more about drugs in the pipeline than many other Dr's. Drugs are closer than you think!!

[couldn't think of a nickname]

There are about 9 compounds in the clinic as we speak. The most potent by far, is VX-950, the second most potent appears to be Schering Plough's drug that just entered phase II. Schering expects their trials to be 24-48 weeks, so that drug wouldn't likely be out until 2009 at the earliest.
VX-950, however, is going to start phase II by the end of this year. The plan is to file for approval in 2008, and it should be approved within 6 months of that filing, meaning that drug is less than 3 years away.
That is based on the following timeline:
Phase IB to start soon and last 2 weeks using 950 and interferon.
Phase II to start at the end of this year. Multiple studies of 1 and 3 months in duration WITH 3 MONTH FOLLOWUP USING TAM. That means that Phase II will be completed in 7 months, or in the second half of 2007 at the latest. Taq Man Assay is sensitive to <10, and undetectable at 3 mos. on that test has the same odds of clearance as using the less-sensitive 6 month PCR test.

Phase III will start and end in 2007. There will likely be a 6 month followup on SVR for this phase, as that is what is expected by the FDA at this time.
Finishing this phase in 2007 will enable them to file for approval in or by 2008.

This will likely get fast track status, and also a priority review which means a decision in 6 months from filing, not 1 year.

All kinds of timelines are thrown out. This is the timeline that VRTX has set, and so far they have met schedule, or gone ahead of schedule.
It looks like better treatments will be out in 3 years or less.
VRTX has already started the scale up process and is making registration batches. They are moving forward aggressively.
BILN 2061 is no longer being pursued. Interestingly, the lead scientist on that project is now working at VRTX and leading (and very aggressively pushing) VX-950. I hear that even though he can't comment on BILN 2061, he feels that 950 is the best he's seen.

The faster a drug works early, the quicker the trials go. Everything else in trials needs 48 weeks plus 24 week follow up. That is why those compounds will take longer.

[couldn't think of a nickname]

My last post was to you as well.
I disagree that no new compounds have come out in the last several years. The 2 most promising ever have come out-VX-950, and Schering Plough's PI to name 2. In the last several years, there have been many compounds to make it into the clinic. If someone were to start development from scratch, it might take 10 years.
It WILL NOT take 8 to 12 years for those already in the clinic (Phase I or later).
Many leading doctors and biotech analysts all have the shorter timeframe.
These companies are constantly providing updates on their drugs, and most are easy to follow up on. The Schering PI now in Phase II has been a closely held secret by them, but doing some digging on the AASLD web site, I found information on that as well.
My research tells me that the soonest should be out later in 2008. Keep in mind that Albuferon is in late phase II and could be out in that timeframe as well.

[couldn't think of a nickname]

Geez, I meant to type that last post to you, but the name got erased.

That post was to update your information Falcons.

[susan400]

Actually, that's a good biopsy report when you could consider that it could have read end stage cirrhosis.  At least you have minimal damage and with treatment you could probably be a responder.  Keep the faith.

Susan

[azgrl]

I am all about treating and getting this **** outta me.  I know it will be harsh but I gotta do it.  The way I see it is stage 1 grade 1 is pretty good news however I have had this for 4 1/2 years(at least that is my doc and mine best guess)  What will I be in another 4 years?  So tx it will be.

I do enjoy and learn a lot from the debating on this forum and it has helped with dealing with the docs....to their annoyance. So always keep up the debates.

What do you call a fish with no eyes?


fsh.

Deb in AZ

[fresnoborn]

I AM WANTING TO TAKE A MULTIVITAMIN BUT I DON'T QUITE KNOW WHAT THE VITAMIN SHOULD HAVE IN IT AND WHAT IT SHOULDN'T. WHILE SEARCHING I HAVE FOUND SOME WITH IRON AND SOME WITHOUT. SOME WITH COPPER, ZINC, ETC. WHICH VITAMINS ARE SAFE TO TAKE AND WHICH ONES AREN'T? MEANING..VITAMIN A, B, C, D, E...ETC. CAN SOMEONE PLEASE HELP ME OUT.  THANKS

[cougareyes]

The only thing I know for sure is that we should avoid taking iron supplements, or multis w/iron. The rest is all subjective.  Peace

[cuteus]

your biopsy results are very good considering what they could be in a worse case scenario. It gives you some time to get things just right should you decide not too chance a non linear progression and treat. Make sure all your ducks are in a row and that you know what side effects might come your way. Expect the worse and hope for the best. Biopsy results should never be the only consideration in choosing to tx or not. Never. You have to count in your age, insurance available, familial resources(if needed) and very importantly, extra hepatic manifestations. Things like cryoglobulinemia, kidney problems, thyroid, fatigue, joint aches, gallbladder, etc. All the organs in your body are getting influenced by the chronic infection, some of us more than others, and we have to decide whether a year or so of feeling miserable is worth getting rid of the extra hep symptoms for good. I came accross a couple of interesting articles that bring to light, yet again, that hep c is not only affecting your liver;
http://www.hivandhepatitis.com/hep_c/news/2005/ad/092805_a.html
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12508302&itool=iconabstr
I found this article on viral replication most intriguing, for if hcv does replicate at these sites, then it must be affecting the tissue adversely and injuring it;
"HCV replication has been detected in hepatocytes (liver cells) and in peripheral blood lymphocytes, but not in immunologically protected sites, such as the testes and brain (Chang 1998).

Laskus and colleagues searched for sites of HCV replication outside of the liver in HCV/HIV coinfected people (Laskus 1998). They found evidence for HCV replication in the lymph nodes, pancreas, adrenal glands, thyroid, bone marrow, and spleen in an autopsy study of eight people who were severely immunocompromised at the time of death. The amount of HCV produced from these sites appeared to be relatively low. The clinical significance of extrahepatic HCV is not fully understood, and it is difficult to definitively determine the presence of replication in the absence of an in vivo model."
http://www.aidsinfonyc.org/tag/comp/heprpt2.html
I believe that once we rid hcv from the blood, it is also erradicated from those sites.
gl on your decission

[jmjm530]

Neupogen helps raise ANC.  If platelets are too low I believe they can intervene with another drug. 82 is still a good number but I understand you concern. I assume, considering your tx history, that you and your doctor will be monitoring your blood frequently.

-- Jim

[ASmile4U]

Neumega is the drug that raises platelets.  Like Jim said, 82 is a rather good number, hopefully you will stabilize and not go much lower.  I dropped from 186 to 53 in 2 weeks time and stabilized around 60 while on tx.  Doc was not overly concerned, just cautious.  I think you're ok til you reach 50, however my doc did weekly platelet counts throughout tx once I dropped.  I'll know a lot more about platelets come Friday, I am seeing a hemotologist to try to get mine back up a bit now that I am not treating.  I'll let you know if I find out anything of interest.  :)

[GoofyDad]

"decide whether a year or so of feeling miserable is worth getting rid of the extra hep symptoms for good."
Oh that it would be such a simple equation....

"if hcv does replicate at these sites, then it must be affecting the tissue adversely and injuring it;"
That's an interesting take. My understanding is that viruses do a lot of replicating within our bodies, most of which is non-remarkable. Potentially injurious to cells, but so are many things, including passing wind, most likely. In my house, the passage of wind often results in the appearance of strange bruising ;-)

[nyhepc]

i hi-jacked the fish jokes and told them at work today...my coworkers are convinced meds are affecting my mind, lol.  thanks for the info on the platelets. CBC's are every monday. i'll be anxious to hear what the hematologist has to say.  neumega...almost sounds like neupogen...i was close  :))

[nyhepc]

has anyone heard from rearfang??

[cuteus]

interesting observations you have made about this activity in your household, hum! who did the checking?

on another note, yes there is probably some replicating in many bodily sites by viruses, but how much is by the same virus for a long period of time in selective organs? one indication that replication in the gallbladder, for example, might be injuring, is that article url on hep c and gallbladder problems that I copyed.
food  for thought...

[sunspot]

“In my house, the passage of wind often results in the appearance of strange bruising ;-)”

How odd, in my house the passage of wind results in crossed eyes and speaking in tongues i.e. G#$ D&* it.

[GoofyDad]

Yeah. We have that too. It's the precursor to the bruising. Even L'Goofy, age 6, can whiff the diff between dad and dog!

[NYgirl]

Well girlie that certainly isn't BAD news and gives you lots of options right?

I tell you if I was a 1/1 I would have to think twice about this all know that the anemia kicked my AZZZZ so bad. I NEVER miss work and to be out two days fainting and passing out like I was...ack.

I know it's not great news to you - but it's certainly good news considering what could have been.  

Wish you the best!

[spider123]

I, went to see my Nurse yesterday and found out that I,
have a "Ferritin leval of  (1221.8 ) which is way too high !!!!!!
The Minimum leval=  22 and the Maximum leval= 322

My regular Iron leval is  (146 )  
                                  Minimum=59
                                  Maximum= 158

I, asked about this and the nurse said that the ferritin leval is high
because it is just sitting around because the bone marrow is not producing enough
white blood-cells !!!  So, I,  take the procrit to stimulate the bone marrow to produce
them !!!!      later !