Aa
Watch and Wait
Hello old friends and new friends. These are comments on my trip to the hepatologist last week….
My history – geno 1a , grade 1, stage 1, probably infected about 1969 -1972 (IVDU) but maybe 1977 (blood transfusion). Treated with Peg and Copeg (1200) for 56 weeks (June 05 to August 06). I had detectible virons – 40 IU/mL at week 12 – so decided to tx 36 weeks after I reached a UND by sensitive testing (week 20) but it was not enough and I did relapse after treatment ended.
I transferred from my local GI to a hepatologist in Dallas and my first visit was May 07. At that time, we decided watch and wait. I had another biopsy Dec 07 which was a little short of the 3 years, but did that for insurance purposes.
Although my bx results were faxed to the heppo, I wanted her to read the slides. Since I had not been able to get through to her medical assistant before the appointment, I signed the papers at the appointment so she will now have the slides sent to review. When she read my 2005 biopsy slides she changed the dx from a 1/1 to a stage 1, grade 1-2. My new bx was also a 1/1 so I am anxious to see how this one is re-graded. I want to know if 56 weeks of treatment did anything at all, and my reading of the reports says no.
The bottom line is watch and wait given my “mild hepatitis” as they call it. She said I have a 20% chance of becoming cirrhotic (I am 60). She said it is totally my choice to treat or not, but I need to weigh the adverse effects of treatment with the benefits to be gained by clearing. She also said the trade out my by QOL.
She does feel Telaprevir is the strongest thing on the horizon. She thinks 3 years before it will be out. I asked her about heresay that Vertex will ask for FDA approval for it to be released to relapsers before treatment naïve, and she said it is already on the expedite track and that, if anything, drugs are usually released for treatment naïve first.
I did visit with the trial coordinator who brought up papers for me to sign for the Omega Duros trial. I am not interested in that one because research shows (me) that omega interferon does not have as high a SVR rate as interferon Alpha 2a & 2b. So I didn’t think the injection method (an implant in the arm that releases interferon over a steady rate for months) would be enough to counteract the inadequacies of the Omega interferon.
I am scheduled to come back for the Hepatitis C Clinic to sign up for the next Telaprevir study for nonresponders maybe in the fall. It will depend on what Vertex’s definition of non-responder is and whether that includes relapsers. But again, the heppo want me to think of the cost and time versus benefits. Weekly flights to Dallas for first mo, then maybe monthly, and quarterly. Lots of time off work and travel expense.
So that’s it, my friends. I shall remain a fly on the wall for now.
frijole
My history – geno 1a , grade 1, stage 1, probably infected about 1969 -1972 (IVDU) but maybe 1977 (blood transfusion). Treated with Peg and Copeg (1200) for 56 weeks (June 05 to August 06). I had detectible virons – 40 IU/mL at week 12 – so decided to tx 36 weeks after I reached a UND by sensitive testing (week 20) but it was not enough and I did relapse after treatment ended.
I transferred from my local GI to a hepatologist in Dallas and my first visit was May 07. At that time, we decided watch and wait. I had another biopsy Dec 07 which was a little short of the 3 years, but did that for insurance purposes.
Although my bx results were faxed to the heppo, I wanted her to read the slides. Since I had not been able to get through to her medical assistant before the appointment, I signed the papers at the appointment so she will now have the slides sent to review. When she read my 2005 biopsy slides she changed the dx from a 1/1 to a stage 1, grade 1-2. My new bx was also a 1/1 so I am anxious to see how this one is re-graded. I want to know if 56 weeks of treatment did anything at all, and my reading of the reports says no.
The bottom line is watch and wait given my “mild hepatitis” as they call it. She said I have a 20% chance of becoming cirrhotic (I am 60). She said it is totally my choice to treat or not, but I need to weigh the adverse effects of treatment with the benefits to be gained by clearing. She also said the trade out my by QOL.
She does feel Telaprevir is the strongest thing on the horizon. She thinks 3 years before it will be out. I asked her about heresay that Vertex will ask for FDA approval for it to be released to relapsers before treatment naïve, and she said it is already on the expedite track and that, if anything, drugs are usually released for treatment naïve first.
I did visit with the trial coordinator who brought up papers for me to sign for the Omega Duros trial. I am not interested in that one because research shows (me) that omega interferon does not have as high a SVR rate as interferon Alpha 2a & 2b. So I didn’t think the injection method (an implant in the arm that releases interferon over a steady rate for months) would be enough to counteract the inadequacies of the Omega interferon.
I am scheduled to come back for the Hepatitis C Clinic to sign up for the next Telaprevir study for nonresponders maybe in the fall. It will depend on what Vertex’s definition of non-responder is and whether that includes relapsers. But again, the heppo want me to think of the cost and time versus benefits. Weekly flights to Dallas for first mo, then maybe monthly, and quarterly. Lots of time off work and travel expense.
So that’s it, my friends. I shall remain a fly on the wall for now.
frijole
To All:
Vertex just rejected me for the Phase 3 Study because I could not produce proof that I had Hep C for at least 6 months. ALT and AST normal in 1997, 2003, 2006, went into 90's in May 2008 and Hep C pos. After attending the consent class and getting all geared up for TX.....I was devastated. I have been asymptomatic, but have had it for years as my liver BX was stg 2, grd 2. The protocol is in place to weed out anyone who is having an acute crisis that may clear itself (what luck! has that actually happened to anyone here).
Now trying to decide whether to start conventional TX, wait for protease inhibitor to hit the market (I just turned 57 and am relatively healthy), or try another study....
Has anyone been in the Schering Plough Boceprevir Pase 2 Study?
This may be an option: "Schering Plough Initiates Phase 3 Studies with Experimental Oral HCV Protease Inhibitor Boceprevir in Treatment-naive HCV Patients and in Those Who Failed Prior Treatment "
Vertex just rejected me for the Phase 3 Study because I could not produce proof that I had Hep C for at least 6 months. ALT and AST normal in 1997, 2003, 2006, went into 90's in May 2008 and Hep C pos. After attending the consent class and getting all geared up for TX.....I was devastated. I have been asymptomatic, but have had it for years as my liver BX was stg 2, grd 2. The protocol is in place to weed out anyone who is having an acute crisis that may clear itself (what luck! has that actually happened to anyone here).
Now trying to decide whether to start conventional TX, wait for protease inhibitor to hit the market (I just turned 57 and am relatively healthy), or try another study....
Has anyone been in the Schering Plough Boceprevir Pase 2 Study?
This may be an option: "Schering Plough Initiates Phase 3 Studies with Experimental Oral HCV Protease Inhibitor Boceprevir in Treatment-naive HCV Patients and in Those Who Failed Prior Treatment "
love drawing my old buds out. Hey goofy - fisheress started a thread a couple of days ago. Have you found it yet?
orleans -- just left some comments on your Vertex post. Oddly enough, the news broke the day of my appointment. Per the news...
"Boger said Vertex expects to take the final data from the trial to the FDA late this year or early next year.
Should the agency agree to review it, he said the application would be only for patients who have stopped responding to other therapies."
So scuttle but was better than the professional.. Maybe, just maybe we relapsers and nonresponders can be in business in 2009!
Bill -- Hi, guy. Glad you concur on the Omega Duros. There was a relapser in Houston who keyed me into the study in San Antonio and I went as far as getting the sign up papers sent, but never sent them back. Just didn't like the statistics. I don't know if she - Magtx on the forum - ever went thru with it. I am surprised your doc is not high on Telaprevir. They do a lot of trials at The Liver Institute at Methodist Hospital in Dallas. That's where I go and that is why she is in tune with it.
Goofydad - how the heck are you? Hope all is well in sunny cal. Is young goofyboy doing well? My grandkids run me ragged but we are getting a break from them right now and I miss them.
Susan -- aren't you in another trial right now? Good news for you if Telaprevir hits the market in 09! Hang in there
greatbird -- I think windows of opportunity are one of the best reasons to treat. Time and place and job security and all that stuff matter a lot. I will look for your posts on the trials. Good luck.
Pro - thanks for the support. I am sooooo glad you cleared.
fretboard -- read your profile and your stats are similar to mine. I even new in 1993 that I had hep C when I tried to give blood. Never did anything until 05 when I decided the time was right. Good luck on your journey. Explain the swelling to me.
frijole
orleans -- just left some comments on your Vertex post. Oddly enough, the news broke the day of my appointment. Per the news...
"Boger said Vertex expects to take the final data from the trial to the FDA late this year or early next year.
Should the agency agree to review it, he said the application would be only for patients who have stopped responding to other therapies."
So scuttle but was better than the professional.. Maybe, just maybe we relapsers and nonresponders can be in business in 2009!
Bill -- Hi, guy. Glad you concur on the Omega Duros. There was a relapser in Houston who keyed me into the study in San Antonio and I went as far as getting the sign up papers sent, but never sent them back. Just didn't like the statistics. I don't know if she - Magtx on the forum - ever went thru with it. I am surprised your doc is not high on Telaprevir. They do a lot of trials at The Liver Institute at Methodist Hospital in Dallas. That's where I go and that is why she is in tune with it.
Goofydad - how the heck are you? Hope all is well in sunny cal. Is young goofyboy doing well? My grandkids run me ragged but we are getting a break from them right now and I miss them.
Susan -- aren't you in another trial right now? Good news for you if Telaprevir hits the market in 09! Hang in there
greatbird -- I think windows of opportunity are one of the best reasons to treat. Time and place and job security and all that stuff matter a lot. I will look for your posts on the trials. Good luck.
Pro - thanks for the support. I am sooooo glad you cleared.
fretboard -- read your profile and your stats are similar to mine. I even new in 1993 that I had hep C when I tried to give blood. Never did anything until 05 when I decided the time was right. Good luck on your journey. Explain the swelling to me.
frijole
Much kudos for sharing your story, it's really close to mine. Everything you wrote except I'm a little younger and I have yet to tx. Not much younger, I'll be 55 this year. Fortunately you aren't too bad off, I am the same grade and stage or really close, you can check my profile. I'm thinking you're even a bit better off than I am b/c I swell. Anyways, much hope and prayers for you. God Bless
I am looking into one of the Telaprevir trials--the one for treatment naive geno 1's. I've had a look-and-wait attitude about this since I was first dx in 2002 and life has been busy. I've had a job where tx issues could be a problem. But now it seems I might have a window of opportunity job-wise.
I'm almost 54. I've had this for at least 30 years. I'm a stage 1 grade 2--or was at my bx in 2002. No symptoms.
I've been so unwilling to chance wrecking my health with these strong meds, but if my odds of clearing are this much better (assuming I don't get the placebo) then maybe I should go for it?
Much to think on.
I'm almost 54. I've had this for at least 30 years. I'm a stage 1 grade 2--or was at my bx in 2002. No symptoms.
I've been so unwilling to chance wrecking my health with these strong meds, but if my odds of clearing are this much better (assuming I don't get the placebo) then maybe I should go for it?
Much to think on.
Ahh, what I would give to have such options! jerry (bx1/3)
"western omelet without the eggs and onions"
Or in this case BEANS!!!
Helloooooo Beannie! Glad to hear you're well. I think you and the FLguy are dialed into the right channel. You're young, footloose, and fancy-free. No need to rush back into Hell's kitchen.
Or in this case BEANS!!!
Helloooooo Beannie! Glad to hear you're well. I think you and the FLguy are dialed into the right channel. You're young, footloose, and fancy-free. No need to rush back into Hell's kitchen.
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
