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Medical Forum / Diseases and Disorders / Hepatitis / July 20076 month follow up
Hi - I haven't been on for a while.I just had my 6-month followup viral load and unfortunately I found out the f--ing dragon is not dead. My viral load went for zero at the end of my 48 weeks of treatment to 200,000. I'm going to see my doctor this afternoon. Not sure what my options are. it's really hard to think about going through another major treatment. I'm just now really feeling good - getting my energy, my hair, my life back! Fainnly looking forward, which was I did not do when I didn't feel good during the treatment. I know I can do whatever needs to be done, I just didn't want to have to. Ya know? I had myself convinced I'd licked the damn thing! >Hi - I haven't been on for a while.I just had my 6-month followup >viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 7 lines] >I know I can do whatever needs to be done, I just didn't want to have >to. Ya know? I had myself convinced I'd licked the damn thing! Ah, rats. Sorry this round let you down, Di Di. It was looking pretty good, too. Damn.... Among other things, I hope the doc advises you to take a year or so to chill out and recuperate before considering another round of therapy. I don't recall you ever posting biopsy data, hopefully you scored really low and have time... If you want to spitball how things went and what might be worth trying just let it rip right here. There are all kinds of folks out there that are or were right where you are now that may lend some of their experience, and you never know that someone might spot something important... /greyhackles > >Hi - I haven't been on for a while.I just had my 6-month followup > >viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 21 lines] > > /greyhackles Thanks for the support, Grey - My biopsy results showed grade 3, stage 2. My viral load was 2,710,000 to start. I can't find my lab with the genotype, and my memory is bad these days, but I think I'm 1A - whatever the hardest one to treat is - lower success rate with treatment at least. My last LFTs were good except my ALT was 48 (normal range 0-31). My doc said that wasn't too concerning (considering it started 111) and my other LFTs were normal. I saw my doctor yesterday. He had 4 options, none of which sounded good - none are FDA approved, so my insurance probably wouldn't pay, and the success rate is only 25-60%, which sucks for what I'd have to deal with. The first one was Infergen with Ribavirin. I'd have to inject myself every day, and it sounds brutal.......2) Pegasys twice weekly for 3 months w/Ribavirin, and then once a week after that..... 3) low-dose Pegasys, inject daily - but just for maintenance, not to kill the dragon, but to reduce the possibility of more fibrosis, OR 4) do nothing. For now, I'm electing to do nothing. My liver is probably healthier after the initial treatment and I was only Stage 2 to begin with. I'm just getting my life back and I feel like I can take care of myself in other ways - reduce stress (good luck on that one), eat better, etc etc. My partner of 9 years left about 7 months into the treatment and I'm still dealing with that - but I am feeling happier and feeling like moving forward with my life as a single woman, so the thought of putting my life on hold again just doesn't sound good, esp with the low-odds of any of the treatments available right now really kicking it's a.s! So, for now, I'm going to continue my recovery from the first round, and live every day, keep healthy and see what comes down the pike in the future. What do you think? >> >Hi - I haven't been on for a while.I just had my 6-month followup >> >viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 58 lines] > and live every day, keep healthy and see what comes down the pike in > the future. What do you think? I think that your treatment was not a compelte failure; you got rid of your partner. Otherwise, you could have wasted the rest of your life with this person who couldn't handle carrying more of a load when you needed him (or her, whatever) most. This situation is rarely discussed here on ash-c, but the fact is that many relationships end because of hepatitis C and its treatment. Health problems do change the dynamic of any relationship, and it's a good indication of the character and the commitment of both parties. Good luck, Di-Di and, believe me, you're much better off without your weak selfish partner. I'm sure your post will elicit many good responses on medical matters, but I wanted to express my feelings to you about this aspect of hep c. Waterspider > > >Hi - I haven't been on for a while.I just had my 6-month followup > > >viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 54 lines] > > - Show quoted text - Hi DI DI, I'm so sorry, Did you have a Viral Load check at 1 month post treatment? I'm on my second round now with just 15 or16 weeks left. I started with the high dose induction daily Infergen for 6 weeks along with the Riba/Amantadine, then stopped the Infergen for Pegasys/ R/A and Procrit. My last month will be the daily Infergen/R/A again to top off my tank! I'm not saying this wasn't hard but I didn't have to work, no children left at home, and a very supportive husband. My NP has been wonderful, Elmo recommended her. It worked for him. Only time will tell if I'm successful and obtain the SVR but if not, I won't do it again, I'll just go fishing and live the best I can. Give your body a rest and decide then. eileen >>>> Hi - I haven't been on for a while.I just had my 6-month followup >>>> viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 65 lines] > > eileen Hi, I relapsed after round 1. Genotype 1a. Was wondering if you'd share the specifics of your current regimen and what prompted you to try this. Also, how have your labs been so far? Thanks! > >>>> Hi - I haven't been on for a while.I just had my 6-month followup > >>>> viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 75 lines] > > - Show quoted text - You've got email. >>>>>> Hi - I haven't been on for a while.I just had my 6-month followup >>>>>> viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 71 lines] > > You've got email. Eileen, haven't talked to you for a while and just wanted to say Hi. Wishing you the best of luck in killing the dragon. I went fly fishing in Alaska earlier in the month. My first time to try fly fishing, it was fun, but didn't do too well at getting any trout in. My daughter went salmon fishing and caught three good sized salmon. She always has better luck than I do, but it sure makes me happier this way. Dwight >> >Hi - I haven't been on for a while.I just had my 6-month followup >> >viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 52 lines] >and live every day, keep healthy and see what comes down the pike in >the future. What do you think? I think you better keep a firm grip on your doctor - he sounds like he has a major clue - and that's freakin' rare in this business! It sounds like he actually gave your situation some real thought and is willing to push the envelope for you. Looking back at earlier posts, you're a 1a. I like the option of twice weekly weight-based Pegylated Interferon + Riba induction therapy. If your first trip was with Pegasys, make this one PegIntron, or vice versa. If you got through 48 weeks of Pegasys + Riba using standard dosing without needing HGFs (like Procrit, Neupogen, etc) then you have a good shot at the induction therapy aspect. Further, I'd test at 4 and 12 weeks this time - and using one of the more sensitive tests (like the ones that get down to 10 IU/ml or even lower). If you go undetectable at week 4 it'll be a major boost to your psyche, and a huge positive indicator for SVR; and if you *don't* go undetectable by week 12, I'd punt the effort and martial all energy to hanging in for The Next Big Thing. You might even consider throwing Amantadine in the mix. If you keep an eye on the sides, it can't hurt and it might help. Your insurance co should cover the standard therapy costs; you shouldn't be exposed for more than the 12 extra Peg shots. A bit of creative thinking: if your insurance co will support a 60 week plan, get "started" 12 weeks early (on paper) and just bank the meds in the fridge... Stage 2 gives you some latitude; if you can drop the Grade a notch or two - avoid drinking, avoid stressors, get your iron load checked, check your diet against any of the "liver friendly diet" sites - you'd have even more time to see what comes up. Again, sorry this round didn't work out for you. You seem strong enough to deal with whatever comes next, but give yourself some time to heal - in all the connotations of that word... Cheers /greyhackles > >> >Hi - I haven't been on for a while.I just had my 6-month followup > >> >viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 94 lines] > > - Show quoted text - Grey - How do I find out if my grade has dropped down - would I have to have another liver biopsy? I was on neupogen 2 or 3 shots a week for most of my treatment. Also, where do I find the "liver friendly" sites? I eat pretty good, but I suppose I better make sure there's not something in my control that I could change for the better. I'm loving this time of year going to Farmer's Market every week and loading up on veggies. >Grey - How do I find out if my grade has dropped down - would I have >to have another liver biopsy? I was on neupogen 2 or 3 shots a week [quoted text clipped - 4 lines] >that I could change for the better. I'm loving this time of year going >to Farmer's Market every week and loading up on veggies. Unlike damage assessment (staging) I'm pretty sure the only way to measure the level of activity is via biopsy. While some may argue that elevated LFTs can be used, in fact there are plenty of folks with grade 3 (of 5) or higher activity that have only mildly elevated ALT. So...all you can do is do all the healthy things and avoid all the bad things, avoid iron in your diet (and again you should get your iron load checked) with the presumption that if you hadn't been doing all those things before you'll be better off now. Stress, for sure, is associated with lowered immune system function. I'm hoping the folks that dropped the liver-friendly URLs here before will do it again - I only stumbled on them through the group. Give it a couple of days and if they don't come through I'll start looking myself. Cheers /greyhackles Here's a liver-friendly site from Canada that I posted before: http://www.phac-aspc.gc.ca/hepc/hepatitis_c/pdf/nutritionCareGuidelines/ I have others, but that one seems to be the most developed. Di Di, we are on the same train. I hope you find a way to deal with the hep C that won't see your liver degrade any further than it has. It got a good long break while you were on treatment. I eat milkthistle 3 x 150 mg simarilyn caps a day, and try to remember to put tumeric on just about anything like taters or macaroni, good thing I like south asian cuisine. :) oh, and a blast of ground flax seed on the morning cereal. I have heard of others growing milkthistle as a power symbol, purely for good ju ju. :) best of luck Cactus Jammies --------------------------- >>Grey - How do I find out if my grade has dropped down - would I have >>to have another liver biopsy? I was on neupogen 2 or 3 shots a week [quoted text clipped - 31 lines] > > /greyhackles It has been changed to http://www.phac-aspc.gc.ca/hepc/pubs/nc-hcp-sn-is/index.html bloody bureaucrats looking for busy work I guess. cj > Here's a liver-friendly site from Canada that I posted before: > [quoted text clipped - 50 lines] >> >> /greyhackles On Jul 14, 8:36 pm, "Cactus Jammies" <cactusjamm...@retinalcircus.orb> wrote: > It has been changed to > [quoted text clipped - 58 lines] > > - Show quoted text - Thanks CJ - I checked out the Canadian site. It was informative.I' ve been thinking about starting milk thistle, but I wanted to do more research on that. I most worried about taking something that will do damage with no benefit, so I've been kind of holding off. But milk thistle seems like it could help and won't hurt! Di On Jul 14, 8:30 pm, "Cactus Jammies" <cactusjamm...@retinalcircus.orb> wrote: > Here's a liver-friendly site from Canada that I posted before: > [quoted text clipped - 51 lines] > > - Show quoted text > <snippage> > I have heard of others growing milkthistle as a power symbol, purely for > good ju ju. :) When I was on tx, I spent hour upon hour in my garden. It was a peaceful place that took my mind of the sides and the worry of whether or not it would work. My yard has a few "theme" gardens like a Fire Garden (all the flowers are red, orange and yellow), Moon Garden (silvery-leaved and white-flowered plants that reflect the moon's light) and Gargoyle Garden (gargoyles are my lawn dwarves). So why not a Hep C garden, or a Dragon Garden? Milkthistle of course would be perfect, but what else? Waterspider >> <snippage> >> I have heard of others growing milkthistle as a power symbol, [quoted text clipped - 12 lines] > > Waterspider Cactus, and some of Elmo's special tomato plants, of course! S > "Waterspider" <nospam@all.com> wrote... >> "Cactus Jammies" <cactusjammies@retinalcircus.orb> wrote... [quoted text clipped - 14 lines] > Cactus, and some of Elmo's special tomato plants, of course! > S Excellent ideas! I also thought of Snapdragons and the immune booser, Echinaceae-- both grow well in my garden. A Bleeding Heart (dicentra) might work too, with the blood-to-blood and heartbreak themes. Hey, we might just be on to something here <g> WS > >Grey - How do I find out if my grade has dropped down - would I have > >to have another liver biopsy? I was on neupogen 2 or 3 shots a week [quoted text clipped - 23 lines] > > /greyhackles I like that - "All you have to do is do all the healthy things and avoid all the bad things" - OK as long as I know they're bad! HA! I don't drink, smoke or do any of that. I am getting more rest. I exercise - mostly walk at this point, although I hope to get back to yoga soon. The stress thing is probably the biggest thing for me. I have a pretty stressful job, but at least I'm only doing one job now instead to 2, and I'm not working any overtime anymore. I just have to focus on what's important, and my job is just that - a job. It's never been my life. I do need the insurance though, dammit! I have had my iron checked. It was high before I was diagnosed,. They thought I might have hemochromatosis at first, but no, it was "JUST" hep C. Yeah right. I'll look back in my lab work and see if I've had my iron tested recently. I don't think I have. Someone said not to eat spinach, but I've heard that there isn't enough iron in spinach to make it bad for the liver. Do you know? My doc says ALT really isn't a good indicator because people can have healthy livers with elevated liver functions, and have messed up livers with low liver functions. I work in a hospital and I know I've seen stone-cold alcoholics with better liver functions that I had before I started treatment, so I believe it. Thanks again for the feedback. I appreciate it! Di > Hi - I haven't been on for a while.I just had my 6-month followup > viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 7 lines] > I know I can do whatever needs to be done, I just didn't want to have > to. Ya know? I had myself convinced I'd licked the damn thing! What was happening to your liver enzymes after treatment if you know? > Hi - I haven't been on for a while.I just had my 6-month followup > viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 7 lines] > I know I can do whatever needs to be done, I just didn't want to have > to. Ya know? I had myself convinced I'd licked the damn thing! BTW, sorry to hear this happened. >Hi - I haven't been on for a while.I just had my 6-month followup >viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 7 lines] >I know I can do whatever needs to be done, I just didn't want to have >to. Ya know? I had myself convinced I'd licked the damn thing! Sorry, to hear the bad news Di Di. I really hope they can improve treatment so this stops happening. Glad to hear your feeling better though and hope you can take some time before going for a second round of tx. Don > Hi - I haven't been on for a while.I just had my 6-month followup > viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 7 lines] > I know I can do whatever needs to be done, I just didn't want to have > to. Ya know? I had myself convinced I'd licked the damn thing! Sorry to hear things did?nt work out this time DiDi, it really is a let down to be in that place, i know, but stay focused on your mission. Meanwhile check your tx history and se if you can make somesthing out and take some time to charge your batteries in wait for another battle. You?re in my thaughts /H > > Hi - I haven't been on for a while.I just had my 6-month followup > > viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 14 lines] > and take some time to charge your batteries in wait for another > battle. You?re in my thaughts > /H Thanks everyone! The first thing I wanted to do when I heard the results is touch-base with you'all. It's good to know there are so many people out there that can relate to what I'm going through, have gone through it themselves, and show so much support. I feel less alone in all this! And I appreciate any ideas anyone has too! Right now I'm trying to deal with the emotional blip after coming so far since I finished treatment - it's funny, I decided I was just going to believe the dragon was dead, period, it was dead and gone - so getting slapped with the reality yesterday has really thrown me for a loop! But I'm resilient, I'll get back to my center and I will live a long and happy life, dammit - if it kills me! The other day I decided my goal for this month was "balance" and I guess this news will be a test to keeping the balance...... > Hi - I haven't been on for a while.I just had my 6-month followup > viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 7 lines] > I know I can do whatever needs to be done, I just didn't want to have > to. Ya know? I had myself convinced I'd licked the damn thing! http://clinicaltrials.gov/ Dont forget the clinical trial option! > > Hi - I haven't been on for a while.I just had my 6-month followup > > viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 11 lines] > > Dont forget the clinical trial option! Hey thanks for the clinical trial site. Question, since my viral load is back up, am I considered a nonresponder? I did respond while I was on treatment, but I'm not sure what the definition of a nonresponder is? >> > Hi - I haven't been on for a while.I just had my 6-month followup >> > viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 16 lines] >on treatment, but I'm not sure what the definition of a nonresponder >is? Simply put, a non-responder never clears. They may get a drop of a log or two, or even more, but non-responders never hit undetectable by definition. With an undetectable viral load at end of therapy (at least) you were clearly a responder. Do you remember how your other on-therapy viral load tests went? Cheers /greyhackles >>> > Hi - I haven't been on for a while.I just had my 6-month followup >>> > viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 26 lines] > >/greyhackles I should have added: "clear" in the above context is synonymous with "undetectable". But "undetectable" while on-therapy is not synonymous with "SVR". /greyhackles > >> > Hi - I haven't been on for a while.I just had my 6-month followup > >> > viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 28 lines] > > - Show quoted text - OK, that's what I was wondering. I figured I was a responder at least on treatment. I started treatment on 2/2/06 (viral load just over 2,000,000), on 4/18 my viral load was 1130, and then not detected in July, October and not detected when I completed treatment on January 24. Di Sorry to hear the news. I am amazed at the strength of so many here that have gonme 3 times or more than 48 weeks. Stay in the momment. lucky > Hi - I haven't been on for a while.I just had my 6-month followup > viral load and unfortunately I found out the f--ing dragon is not [quoted text clipped - 7 lines] > I know I can do whatever needs to be done, I just didn't want to have > to. Ya know? I had myself convinced I'd licked the damn thing! |
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