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Medical Forum / Diseases and Disorders / Hepatitis / February 2007Relapsed after Tx -- Now what?
Back to square-one. Finished 48 weeks of treatment in early October. Undetectable at 12 weeks and again at 46 or so. Just got results from recent blood work and I'm offically a relapser. (big long sigh) Would like to hear from others who've been in my shoes and especially from those who achieved SVR after 2nd, 3rd, 4th(?) round of Tx. I think that the industry-standard is to switch to Infergen and possibly longer than 48 weeks (yikes!). I'll see my doc on Friday to discuss options but I usually get a lot more information here than from him. Generally I'm wondering where I go from here. Thanks. Hi Stretch, I'm really sorry to hear that.Waiting for results after second round,this time i started off with infergen.Did you relapse as soon as you stopped the meds? john > Back to square-one. Finished 48 weeks of treatment in early October. > Undetectable at 12 weeks and again at 46 or so. Just got results from [quoted text clipped - 11 lines] > > Thanks. > Hi Stretch, > I'm really sorry to hear that.Waiting for results after second [quoted text clipped - 16 lines] >> >> Thanks. Discovered the relapse at 3 months post tx. Thanks. I know how you feel Stretch. I relapsed the first time as well. Now I'm waiting for my 4 week post treatment after my second round. (48 weeks this time) You're doc is the one that'll give you your options now. In my case the dosage was a total FUBAR and there was a two week gap in the treatment. So the doc ordered the same Interferon but for 48 weeks this time. He was convinced that the screwed up dosage was the contributing factor to my failure. I had a high VL this time though. (10.8mil), but I am a genotype 2 so that may help. At 12 weeks and beyond my count was undetectable as well. Elmo did it three times. I think he did the Infergen the last time. If this doesn't work for me this time then I think I'll have to go down that road as well. Maybe you also? Good luck Stretch and I hope you eventually beat this thing. > Back to square-one. Finished 48 weeks of treatment in early October. > Undetectable at 12 weeks and again at 46 or so. Just got results from [quoted text clipped - 11 lines] > > Thanks. Hi Stretch, Sorry to hear the news. You've been through an awful lot. It's been about a year since I found out I relapsed, only for the first time. (heh heh) How are you physically? And mentally and socially? I know that immediate re-treatment has not been an option in my case. How about you? Have you wondered about your liver health and cirrohsis? That's what is going through my mind pretty continuously. Does your specialist discuss all this stuff with you? It sounds like you had a three month post-tx pcr, instead of the six that I waited. If you are considering trying to keep your liver as healthy as you can, I have found that it is not really that easy to get solid information. I'm looking into effective ways of trying to reduce the seatosis that most hep C sufferers have in the liver. And of course the concentration of fibrosis. There are lots of potions out there. I currently take about 350 mg of milkthistle a day. It is has benign effects at worst, I suppose. Very little or no booze. Reduced fat and carbohydrate diet including lots of fibre and omega-3's , exercise every day, that's about the best I've been able to do so far. And I am back out in the world again. That's the good part. :) Meanwhile I hope not all pharmaceutical companies go the way of Pfizer and start to shut down research labs. I have other thoughts about why the pharmas are not prepared to lose sole patent rights after controlling the market for 12 years. But anyway, Keep the faith, the dragon is a dog in drag! cactus jammies ============= > Back to square-one. Finished 48 weeks of treatment in early October. > Undetectable at 12 weeks and again at 46 or so. Just got results from [quoted text clipped - 11 lines] > > Thanks. > I currently take about 350 mg of > milkthistle a day. FYI on milkthistle: it slows down the processing of any drug that is metabolized by one specific pathway (enzyme) in the liver. If you are taking one of those drugs, you may need to take less to avoid it building up to too high a level. I found this a couple of years ago in a peer-reviewed study via the internet (it may have been done at UC or in Chicago). I then looked up what drugs would be metabolized more slowly if taking milkthistle because they are processed by this one enzyme. There aren't many drugs on the list, and as I recall none of them are commonly prescribed, but lo and behold, an arrhythmia medication I take that is not often used in the US (propafenone aka Rythmol) was one of those on the list! Rather than get tested for blood levels of propafenone, I decided to stop the milkthistle. I'm not at all suggesting anyone stop taking milkthistle, and I hope I made it clear that not very many common medications interact with it as I recall, but anyone who is "on" a medication for life (like I am with the arrhythmia stuff) might want to check it out just to be sure. Sorry to hear that Stretch. It sucks really bad, but you have to roll with the punches on this one. Don't allow yourself to get down in the dumps, don't put away the anti-d's just yet. The first thing you need to do is recover from your 48 wk tx for at least 6 months. You've got plenty of time to figure out what you need to do next. My suggestion is to examine all the factors that influence tx outcome and to work on the things you can change. For example, are you overweight?.....do you have too much iron in your system?....etc. Start taking your milk thistle again. It looks to me like you came pretty close to beating the dragon. I think if you get yourself a bit larger ball bat next time, you will get the results you want. I prefer the shock and awe strategy of Infergen and Peg together (yeah, at the same time) along with plenty of riba and amantadine. That's what got me 'over the top'. At any rate, get your body back in shape over the next months and give em hell next time. elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum > Sorry to hear that Stretch. It sucks really bad, but you have to roll > with the punches on this one. Don't allow yourself to get down in the [quoted text clipped - 18 lines] > > http://community.webtv.net/elmoemerson/TheFamilyAlbum I don't really get down about things so I'm not too worried about that. My VL is low (128K) and I was stage 2-3 when I was checked a year ago. I'm told that tx is a good thing for the liver so that's encouraging. Not overweight, exercise regularly (motocross, remember?) and am in very good shape other than the big blob called a liver. My doc only recommends infergen for non-responders. He'll do it but only if I ask. So I need to decide if and when I want to go that route. I may look at a trial of VX-950. It's the latest wonder drup for Hep-C. Got contacts for Hep-C docs at major universities and I'm going to start sending E-mails to see if they have any good advice. Beyond that I'm racing tomorrow. Life ain't that bad really (yet). Thanks Elmo. take elmos advice. do another treatment affter taking a break. i think it was miles keaton andrew who failed his first round. then added zadaxin (misspelled maybe) reversed the liver damage but lives well with the hcv..... still. i have that info somewhere. i would gladly send it to you. > take elmos advice. do another treatment affter taking a break. i think > it was miles keaton andrew who failed his first round. then added > zadaxin (misspelled maybe) reversed the liver damage but lives well with > the hcv..... still. i have that info somewhere. i would gladly send it > to you. Please do. Thanks. Sorry to hear this Stretch. It sucks, big time. I also relapsed after my first tx - 48 wks for geno 1b. I'm now at week 40 out of 72 on high-dose peg-Intron and riba. It really sucks, but I'm more than half-way there, so I'll stick it out. Good luck to you bro. Thom  Signature{formerly known as Firestar} > Back to square-one. Finished 48 weeks of treatment in early October. > Undetectable at 12 weeks and again at 46 or so. Just got results from [quoted text clipped - 11 lines] > > Thanks. > Sorry to hear this Stretch. It sucks, big time. > I also relapsed after my first tx - 48 wks for geno 1b. I'm now at week > 40 out of 72 on high-dose peg-Intron and riba. It really sucks, but I'm > more than half-way there, so I'll stick it out. > Good luck to you bro. > Thom Hi Thom, Man, that 72 weeks is a long haul I'll bet, especially with the Big Guns. 40 left? That's sounding better, less than a "normal" round of tx for geno 1. You hang in there. Waterspider >> Sorry to hear this Stretch. It sucks, big time. >> I also relapsed after my first tx - 48 wks for geno 1b. I'm now at week [quoted text clipped - 9 lines] > > Waterspider Myrtle, I'm definitely hanging sweetie. Actually, I have only 32 weeks left (this Thurs will be shot #41). BTW I'm going to try to upload a few more photos to go with the dragon skull in the Flickr gallery. Open to critique via email. Thom > Back to square-one. Finished 48 weeks of treatment in early October. > Undetectable at 12 weeks and again at 46 or so. Just got results from [quoted text clipped - 11 lines] > > Thanks. So sorry to hear of your relapse, Stretch. That sucks, bigtime. I don't know that you'll get a lot of feedback from relapsers who achieved the coveted SVR... most people, when they finally kill the dragon, are physically and mentally exhausted yet eager to get back to the real world and a life without hepatitis c. Continuing to participate in this newsgroup, for some, is just not part of that lifestyle. That said, there are still a few real warriors here (like Elmo) who have won their personal battle but continue to fight the war. Waterspider Re: Relapsed after Tx -- Now what? Group: alt.support.hepatitis-c Date: Tue, Jan 30, 2007, 11:34am (CST-2) From: waterspider@moonlight.net (Waterspider) "Stretch" <lonepawn@mail.com> wrote in message news:12rg6dqcr06d067@corp.supernews.com... Back to square-one. Finished 48 weeks of treatment in early October. Undetectable at 12 weeks and again at 46 or so. Just got results from recent blood work and I'm offically a relapser. (big long sigh) Would like to hear from others who've been in my shoes and especially from those who achieved SVR after 2nd, 3rd, 4th(?) round of Tx. I think that the industry-standard is to switch to Infergen and possibly longer than 48 weeks (yikes!). I'll see my doc on Friday to discuss options but I usually get a lot more information here than from him. Generally I'm wondering where I go from here. Thanks. So sorry to hear of your relapse, Stretch. That sucks, bigtime. I don't know that you'll get a lot of feedback from relapsers who achieved the coveted SVR... most people, when they finally kill the dragon, are physically and mentally exhausted yet eager to get back to the real world and a life without hepatitis c. Continuing to participate in this newsgroup, for some, is just not part of that lifestyle. That said, there are still a few real warriors here (like Elmo) who have won their personal battle but continue to fight the war. Waterspider ////////// :-) http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum > Re: Relapsed after Tx -- Now what? > [quoted text clipped - 22 lines] > ////////// > :-) Wha? You think I don't get you? (((hugs))) Re: Relapsed after Tx -- Now what? (Spidey) Group: alt.support.hepatitis-c Date: Fri, Feb 2, 2007, 6:44pm (CST-2) From: waterspider@moonlight.net (Waterspider) <elmoemerson@webtv.net> wrote in message news:8098-45C34D59-78@storefull-3255.bay.webtv.net... Re: Relapsed after Tx -- Now what? Group: alt.support.hepatitis-c Date: Tue, Jan 30, 2007, 11:34am (CST-2) From: waterspider@moonlight.net (Waterspider) "Stretch" <lonepawn@mail.com> wrote in message news:12rg6dqcr06d067@corp.supernews.com... Back to square-one. Finished 48 weeks of treatment in early October. Undetectable at 12 weeks and again at 46 or so. Just got results from recent blood work and I'm offically a relapser. (big long sigh) Would like to hear from others who've been in my shoes and especially from those who achieved SVR after 2nd, 3rd, 4th(?) round of Tx. I think that the industry-standard is to switch to Infergen and possibly longer than 48 weeks (yikes!). I'll see my doc on Friday to discuss options but I usually get a lot more information here than from him. Generally I'm wondering where I go from here. Thanks. So sorry to hear of your relapse, Stretch. That sucks, bigtime. I don't know that you'll get a lot of feedback from relapsers who achieved the coveted SVR... most people, when they finally kill the dragon, are physically and mentally exhausted yet eager to get back to the real world and a life without hepatitis c. Continuing to participate in this newsgroup, for some, is just not part of that lifestyle. That said, there are still a few real warriors here (like Elmo) who have won their personal battle but continue to fight the war. Waterspider ////////// :-) Wha? You think I don't get you? (((hugs))) /////////// I've always admired your powers of deduction, Spidey. :-) elmo <hugs back at ya> http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum > there are still a few real warriors here (like Elmo) who have won their > personal battle but continue to fight the war. Waterspider [quoted text clipped - 6 lines] > elmo > <hugs back at ya> gee, nobody but Venus wants to hug a hepper in cactus pjs! :( cj (political hat on today, slashing away at the Capitalist destruction of social values) >> there are still a few real warriors here (like Elmo) who have won their >> personal battle but continue to fight the war. Waterspider [quoted text clipped - 9 lines] > gee, nobody but Venus wants to hug a hepper in cactus pjs! > :( Not Venus, but an affiliation with Mercury in the cosmic realm... (((hugs cj))) Ouch! Ouch! Ouch! Ouch! Ouch! <flies away, pulling out little cactus prickles> >> gee, nobody but Venus wants to hug a hepper in cactus pjs! >> :( [quoted text clipped - 6 lines] > > <flies away, pulling out little cactus prickles> Venus has her marble personal body armour to protect her, and she has no arms, at least the Venus de Milo doesn't. Cactus spines = vested spiritual equivalent of 'within you without you' 3~ thanks, spidey. Re: Relapsed after Tx -- Now what? Group: alt.support.hepatitis-c Date: Tue, Jan 30, 2007, 11:34am (CST-2) From: waterspider@moonlight.net (Waterspider) "Stretch" <lonepawn@mail.com> wrote in message news:12rg6dqcr06d067@corp.supernews.com... Back to square-one. Finished 48 weeks of treatment in early October. Undetectable at 12 weeks and again at 46 or so. Just got results from recent blood work and I'm offically a relapser. (big long sigh) Would like to hear from others who've been in my shoes and especially from those who achieved SVR after 2nd, 3rd, 4th(?) round of Tx. I think that the industry-standard is to switch to Infergen and possibly longer than 48 weeks (yikes!). I'll see my doc on Friday to discuss options but I usually get a lot more information here than from him. Generally I'm wondering where I go from here. Thanks. So sorry to hear of your relapse, Stretch. That sucks, bigtime. I don't know that you'll get a lot of feedback from relapsers who achieved the coveted SVR... most people, when they finally kill the dragon, are physically and mentally exhausted yet eager to get back to the real world and a life without hepatitis c. Continuing to participate in this newsgroup, for some, is just not part of that lifestyle. That said, there are still a few real warriors here (like Elmo) who have won their personal battle but continue to fight the war. Waterspider /////////// I'm just in it to find hot, horny women. ahahahahahahahaha!!!! elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum Hi Stretch, Sorry about your relapse. I had a similar experience with my first treatment on Peg-Intron/Riba. I started at 6.7mil and was clear from week 6 through EOT (week 48) then relapsed. Six months later I started daily 15mcg Infergen which I completed in May '05. Got my 18-month post treatment in Dec '06 - clear. I was just starting to breath easier when I found this: http://www.hivandhepatitis.com/hep_c/news/2007/121506_b.html I used a lot of "rescue" drugs with the Infergen including Nuelasta, Aranesp, Zoloft and several others. I worked full time during both treatments (computer job) and only missed two work days on the Infergen/Riba. The worst thing about work for me was avoiding getting into discussions because of often losing my thought in mid-sentence. I think you're a good candidate for Infergen because of you are evidently in good physical/emotional condition. And I would say that daily 15-18mcg Infergen is your best choice for retreatment at this time. Best, Bob > Back to square-one. Finished 48 weeks of treatment in early October. > Undetectable at 12 weeks and again at 46 or so. Just got results from [quoted text clipped - 11 lines] > > Thanks. > Hi Stretch, > [quoted text clipped - 35 lines] >> >> Thanks. How did you come to the conclusion that Infergen was your best option? What shape was/is your liver in? I'm grade 3, stage 2 with VL about 128K. Thanks. Hi Stretch, Before starting Infergen I looked at all the published studies my doc and I could find and, beyond any question, daily high dose (15-18mcg) Infergen gave the best result for 1a relapsers/nonresponders/partial responders. I think Infergen may be underutilized by being used only to treat relapsers/nonresponders. I think it should also be considered for treating first time patients that have many of the factors (genotype, duration of infection, VL, age, sex, liver staging) that predispose them to significantly lower than the ~50% chance of SVR that they have with the conventional first time treatment regimen. Sure it's harder because of the daily injections but why fool around with conventional treatment if the chance of success is only 20-30%, THEN having to do Infergen? Too bad a pegylated Infergen never materialized. I was grade 2/stage 2 at my last bx before starting Infergen. My VL was 500,000 then. Best, Bob >> Hi Stretch, >> [quoted text clipped - 40 lines] > What shape was/is your liver in? I'm grade 3, stage 2 with VL about 128K. > Thanks. > Hi Stretch, > [quoted text clipped - 63 lines] >> What shape was/is your liver in? I'm grade 3, stage 2 with VL about 128K. >> Thanks. Daily shots ... (sigh). Weekly sucked. How did you deal with this? My weekly's were always in the thigh. Did you change up the injection sites? You'll be surprised what you can do. ;-) Weekly injections are a cakewalk. I just decided that if a diabetic could do multiple daily injections and not bitch too much I could too. Ok, so I was wrong. :-) Some days I did three injections (Infergen, Aranesp and Nuelasta) in the same evening. I rotated between thighs (upper and lower) and abdomen (both sides). Calves might be another possibility. There were many days and nights blurred into a robotic routine of eat (when possible), sleep, work, inject; eat, sleep, work, inject; repeat for 48 weeks and you're done. :-) Be glad if you're in decent physical shape; that should make it a bit easier to tolerate. I have a friend that just terminated treatment at week 36 of 48 of PEG-Intron/Riba because of a combination of sides and viral rebound. She'd like to do Infergen next but the doc doesn't think she could handle it because of the problems she had on PEG-I. Best, Bob > Daily shots ... (sigh). Weekly sucked. How did you deal with this? My > weekly's were always in the thigh. Did you change up the injection sites? Hi Bob. A few of us struggled with the same findings about "occult" HCV a few weeks ago. It was a worthwhile discussion. Here is a link to that thread, it might interest you. If this link doesn't work for you maybe you can find the thread in a google search. The first post was dated November 17. http://www.talkaboutsupport.com/group/alt.support.hepatitis-c/messages/90681.html best, kj Hi kj, Thanks for the link. Interesting posts by you and Thomas. I was wondering about one comment by Thomas: "Given that practically all patients with SVR experience a significant and sustained positive effect on fibrosis and even cirrhosis,..." Does anyone know of links to any studies that confirm this? Best, Bob > Hi Bob. A few of us struggled with the same findings about "occult" HCV a > few weeks ago. It was a worthwhile discussion. Here is a link to that [quoted text clipped - 6 lines] > best, > kj >Hi kj, > [quoted text clipped - 9 lines] > >Bob Tons. Google this string: improvement in liver histology with SVR Cheers /greyhackles Grey, Thanks for the search suggestion. Reading. :-) Bob >>Hi kj, >> [quoted text clipped - 18 lines] > > /greyhackles |
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