You are correct that ejoli is in the relapser trial with Pegasys and Riba. I guess I assumed that they would need to finish all trails before applying. If not, that is great. Still, I wonder about Telaprevir. It seems that they still haven't figured out how to reduct the rash that some people get, and I think it is significant, from what people have said.
What do you think will be standard of care with the first generation PIs -- the regular mix - INF and RIBA and the PI added to it? I am trying to imagine what treatment will entail at first. You think the second generation might drop the INF altogether? I am really interested to see how this plays out.
Have you had a biopsy since you stopped treatment?
Boy, I will have to start working on "goofy threads"....................
frijole
>what do we ante up
not sure - maybe the winner gets a high-quality transcript of all Goofydad's jokes to help them through tx.
As I understand it ejoli is participating in the BC/relapser trial, not the BC/phase-3 tx naive (which will have full data by June'10). I would expect Schering to file for approval on the strength of its tx-naive data so I'm guessing submission by August and approval by Feb 22.
It's hard to know what's age and what's tx/hcv related. I just saw a neurologist for worsening neuropathy in my feet but beyond mentioning a correlation with hcv there doesn't seem to be much scope for intervention. And your assessment of options seems right on point as far as I can tell. In fact you could quite reasonably wait for the 2nd gen PIs and/or combo PI tx (which would reduce ifn time dramatically).
I'm ahead of you on the fibrosis curve (somewhere between 1.5 and 2.5 depending on who I ask, but more likely closer to 2.5 ) so can't wait that long.
franke,
I read your profile and treatment sees to have sucked out your life force. I can't answer you as to why your scores are still so low. What shape were you in when you treated? I sympathize with you and hope things get better. If you look in the archives there are some pretty good threads on vitamin supplements for fibrosis reversal. Sorry I can't help you in reading your fibrospect scores but perhaps someone will come along that will.
drang
I think that I do want to treat, but that it might be foolish given that I am in good health and have no outward signs of liver damage unless it is my tiredness every evening and I am not convinced that would change with treatment and that I seem to be very stable. Looking at one of the charts in the fibrosis presentation that I linked , there is a 70% chance I will not reach cirhhosis in 10 years at which time I will be 71. If I live that long, I will already have outlived my mother and dad only lived to 78. -- those are factors to consider. The surgeon who did my two biopsies said my liver was better than most people my age and discouraged my treating. My high-powered hepatologist in Dallas is of the watch and wait opinion. I am not afraid of the neuropathy although I didn't like it much. I think it took a good six months to regain all feeling in my fingertips and toes (not toews _criminy my typing is cr@p) after tx. I still do think I will tx when the PIs are available.
frijole
Why do you feel it would be foolhardy to treat again? Because of the possible destabilization of the immune system you mentioned? - or the neuropathy?
And how long did it take for the neuropathy to subside? I'm fighting mine off with supplements and exercise, but it seems to be progressing a bit. Seeing GP today, then hopefully neurologist.
my fibrospect index score is 73/ Metavir F2-F4 87.9% F1 8.9% and FO 3.2%
So my Hepatologisat said I am septal and bridging fibrosis F-2_F-3 and Cirrhosis F4.
said Advanced End Stage. Finished Tx nearly 4 years ago. Thought all my symptoms were lingering sides-wrong!
Hey, goof -- cut to the near the end of the presentation (if you find your password -- lordy, thank goodness mine is memorized in there or I would be lost) and there is a chart called "Improvement in Fibrosis at week 72 following start of SVR" (I don't think it means 72 weeks of treatment, just 72 weeks after atarting treating). The charts makes me dizzy --- one upside down and one right side up -- but 1 whole point drop in the Metavir score at week 72 if you reach SVR. One the same page - if I am reading right -- 50% of the SVR patients did improve. There is some other stuff in the presentation which I think is hopeful in terms of what I would call stable cirrhosis.
willing -- let's start this pool. I had it all worked out based on ejoli's start date in the BOC trial --she has 42 weeks to go + 24 weeks post + 12 weeks for FDA approval -- that puts it at the end of 2011 -- I am going to say December 15th - WHat do we ante up?
The clinic did not get the Boceprevir r/r trial (AGAIN!) Said they filled the trial and did not use their site. A woman left a message about a PI trial coming up in July (don't know what PI) but it is a stand alone -- no SOC. I didn't call her back yet, but she said she would call when she knows more. Be expecting a contact from me. I wouldn't even consider it without talking to you first!!!!! I don't think it would be worth getting PI resistent.
Mike and Deb
Whooppee is right!!!!!!!!!!!!!!!!!
frijole - bean
Michael
You know I love what you just posted :)
Deborah
Quoting frijole"
"Good news – improvement shown in fibrosis at week 72 .....IF SVR – A REDUCTION IN THE METAVIR SCORE. "
no way Senora - I'm planning to show up with sleeping bag and camp outside the door the week before. Maybe we should start an approval-date-pool.
Thanks for the post ( full of stuff I'd rather not know..)
I assume you decided not go for the BC/relapser trial. Good move, I think there's a good chance that by also throwing Alinia/SAMe and a statin into the blender it might be worth betting on 24w.
Thanks for posting this Oh Beanie One.
I'll get in there to watch it eventually - have to find my password forst :(
Did you happen to notice whether they talk about post SVR regression at all?
cancer and then hep C -- boy you got dumped on. Congrats on your SVR. Cancer free too???? Are you still draining the drugs out of your system? It seemed to take a long time for me. I had neuropathy in my toews for quite some time, but it did finally go away.
I was afraid the tx for hep C may have destabilized the healthy relationship my immune system seemed to have with my 3 millions little hep buddies but everything seems to be status quo. It would probably be fool hardy for me to treat again, but I do think I still will eventually.
frijole
I am SVR, thank God, but I was grade 2-3, stage 2-3 when diagnosed. I have also heard the progression is non-linear. I was shocked by the diagnosis and the state of my liver. My cancer surgeon had visualized the entire liver just 3 years before during surgery and at that time did not note any damage, so my fibrosis must have progressed to stage 2-3 fairly rapidly. I wonder if the chemotherapy acted to accelerate the liver damage.
Thanks. I see so many questions on this issue I was hoping to get up a running discussion on fibrosis and its progress.
for example, my biopsy is grade 1, stage 1-2. I am 61. According to information in this program, there is a 29.6% chance that I will reach cirrhosis by the time I am 71. I have already failed treatment once. How much should I push to retreat? I fully intend to reteat as soon as the PI's hit the market -- I intend to be the first one at the pharmacy counter with my prescription. But why???? Is this really the prudent thing to do?
I have heard before that the inflammation and fibrosis can go south in a heartbeat -- that the progression is not linear and that one never knows when the inflammation and subsequent fibrosis will increase. However, this presentation talked of reaching a "stable" condition. It didn't go into detail, but that would seem to be where I am. I have probably had C for close to 40 years, yet my immune system seems to have kept it at bay. Nonetheless, I appear to have an old and tough strain.
just curious questions I ask myself
frijole
Thanks, that looks interesting and informative. I will check it out.
jd
Answer ....................... 5. HCV genotype. Did you get it right?
More from the slide presentation
fibrosis score under or at 1.9 ----- 29.6% chance to reach cirrhosis in 10 years
fibrosis score 2 – 2.9 .....................42 % risk to reach cirrhosis in 10 years
fibrosis score 3-3.45.....................100% friends. 100% chance to reach cirrhosis in 10 years.
Inflammation score
0-1 .05 change each year
2-3 .19 change each year
over 4 .37 change each year
There is also a good discussion of steatosis and insulin resistance and how these negatively impact liver disease
-Daily cannabis use accelerates liver disease
-alcohol increases the run to cirrhosis
Good news – improvement shown in fibrosis at week 72 .....IF SVR – A REDUCTION IN THE METAVIR SCORE.
There is more and I hope you will fnd the time to take this course. The more I learn about fibrosis and cirrhosis the better I am able to make decisions concerning my hepatitis C
frijole
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