Hi Deb. Just got your note. I go for my three month on January 3rd, so I am assuming that my six month will be in April. But I have follow-ups until August of 2011. Presumably because I was in a trial study. So far, so good. My one month post tx check up was great, Hgb back up to 13.2, platelets good, uric acid down to 9.7 from 12, glucose down, and the best news was that (and I know this is still early but...) I am still UND. I am pushing myself forward, working as hard as possible to get back to normal, but I have to say that I feel great. Better every day. Wishing you well, you are a great encouragement!!! Pos.
AHHHHHHHHHHHHHHHHHHHHHHHH SVR!!!!!!!!!!!!!!!!!!!! Another great Deb beats the dragon!!!!!!!!!!! WAHOOOOOOOOOOOOOOOOOOOOO! Seriously that is the best best news! I am SO HAPPY FOR YOU :) YAY! Man there is nothing better on a dreary monday afternoon at work than getting such great news. Thank you for letting me know, you really just brightened up my whole world! YAY Deb!!!!!!!!!!!!!!!!!!!!!!!
I did 72 weeks of SOC because I didnt clear until after week 12 but before week 24 so I wanted to increase my odds. We had only just heard the first words about Tela and not even Boce back then when I treated so there wasn't any option really available. But I've been SVR for over 3 years so......I hope and pray in a short time we can get you into "SVR mode". It does take a while to really really believe that you've beaten it after that....us paranoids have worked so darn HARD on treatment we can't believe when it finally happens. You'll see! :) Deb
Deb's always have the answer don't we? ;) There are so many Debi, Debby, Debbie, Deborahs on the forum right now it's funny. I guess it has something to do with our name being so popular back then we all must be around the same age. Either that or it's much more possible than i thought. hahahah
Hey I found the link to the thread by some strange miracle (I can never find anything when I am looking for it!) I'm not sure what is going on unless perhaps one person started one forum and Janis started the Delphi forum - that is all that makes sense to me but hopefully she will put all the info back up again. The sad thing is you didn't used to have to register to see any of the info and lots of people don't want to register to do anything they are worried for their privacy (stigma of our disease and all that junk). Well that is the history. Thanks for pointing out the message board someday when I get time I'll look again - probably lots of people from MH already over there! Deb
Unfortunately it's not the same thing it used to be - now it's more like a message board. In the olden days (actually till pretty recently) it was a website full of tons of useful (and correct) information. I dont know what happened to the folks who ran it but we did get a notice that it was changing to be more like a blog/message board thing. I hope that they are just under construction and they bring all the hard facts back again - it was the single most useful resource out there. I think the add used to be janis7hepc.com or something like that but that is gone now. I have my hands full at work trying just to answer a few questions every day here at work and it used to be so easy to point them to the answer by just linking.Ill look on mH for the post that day! deb too :)
I hoped it might come as an inspiration. Now that TX has been around awhile, retests of SVR folks have been run again several years later. After 6 or more years those who attained SVR during TX were still UND. Also, with sensitivity of PCR's now near zero, it also tends to confirm complete eradication of virus.
The good news is that when co-infection detection became possible in 2006, more HIV patients were seen as being co-infected. All of which is providing new insights and revelations of the virus that may bring a vaccine as well as a TX which even the insurance companies will accept as a cure.
I wish you well with you TX and hope you are able to attain SVR.
Just a quick note to say hi!
I sent my note before I saw your profile.
Hoping for SVR!!!
Thank you for everything!
I was hoping that people would understand that I wasn't just trying to argue. I felt like those other people had put out so much negative and nobody seemed willing to stand up for what was right, so I figured I would. I worry that the new people will be afraid to post because of being afraid of the recriminations. Maybe if they know that I'll be willing to stand up for them, they will be a little braver. It is a shame that anybody would have to even feel that way on a "Support Forum" but as long as there are mean people in this world, I guess that is just the way it will be.
Are you doing tx now?
Thanks for the advice and I hope you remain und. I won't miss any doses when I get through with the lead-in, I read how important it is. - Dave
Just a quick note to say hi! hello Debi , I am currently not on treatment, since I have been already. I went through treatment from 2007 to 2008, Peg.Int/Ribav. and was negative at the middle of treatment (geno 1, therapy lasted 24 months), but positive at the end. Now I am waiting for new treatment. I am from Serbia. Greetings,
Just a quick note to say hi!Hi Debi, I just saw you sent me an email when I signed on. I have taken 2 shots so far. Am really tired for 4 days after each shot, feverish, headachy, no appetite. But, that is not too bad considering what others go through. I go for a blood test Fri to check my wbc and rbc. I am lucky as I am on LEA from work as a special ed teacher. I seriously couldn't do this tx while teaching. I have no other health problems yet so hopefully tx will go easier for me than for others. Are you in tx now? What is your status? Hope all is well with you. Thanks for contacting me. It's nice to talk to people who know what I am going through.
Thank you for everything! Hi Debi again,
No as I said, I am not at any treatment for the moment . Waiting for a new one. What is your opinion , about repeat standard therapy?
Just a quick note to say hi! Dear Debi,
Thank you very much for a detailed answer. I , am from Serbia, so we have coverd tx for HepC (which I failed at the end) . My Doc. sais , that is not usefull, to try another time same therapy ( I wonder if this is true, since I found at forum many, many people, who repeated it with Pegasys/Ribavirin, several times, and some of them became SVR at the end. So I think it is worthwile trying, but, unfortunately, insurance dont cover repeated tx. Clinical trials, are held in the region in Austria, but I dont know anyone who was excepted from here. Maybe yes. So, seems to me that I will have to wait. Everything Best
Gosh, really, really sorry that I was so obscure and worried you. I was 4 weeks lead in on SOC followed by 24 weeks SOC + Boceprevir. I took the boceprevir but it was silly since I cleared 3 weeks before time to start it (I was UD on 1 wk PCR; called Ultra Rapid Viral Response). At the time I considered taking the PI anyway a guarantee of a cure and knew it would make my odds of SVR at 100%. I was right about my odds and I don't believe the unnecessary boceprevir did me any harm. Was UD at the 36 wk followup and will be forever. My last trial clinic visit will be March 30 (72 weeks from Day 1 of TX). You get very dependent on your trial team but at this point I will be pretty happy to never see them again.
Hi; nice to read someone with some sense on the forum. The numbers in the stats are drawn from the total number treating in that trial, so you've got people like me (cleared on SOC before starting the boceprevir..odds for SVR were 93-94%. I was in Sprint 2) and those unfortunate few who were not responsive to boceprevir at all. You can only take hope from the numbers, can't predict your own outcome until you clear. Go to http://www.hivandhepatitis.com/hep_c/hepc_news_alter.html#boc to see compilation of all new drug results.
Just a quick note to say hi! Hello Debi, I am not presently at the treatment, and I am waiting for new therapy. In my country, Health Fund, dont allow, repeated therapy, in other words, I would have to pay for it, and it is expensive. Thanks God, I feel well, taking supplements, Silimarin, Aloa, some Ayurveda remedies, vitamins, teas, etc. Thank you for answer, and tell me how long have you been on treatment?
Just a quick note to say hi!Hi DebiS99, How is going, are you negative?, Hope everything works good with you , buy