Aa
What's up, what's going on?
someone please give me the rundown with everyone.....short form, who's still UND, who isn't, who has bad sides, who doesn', who's finished and who's starting.
Anyone got the rundown on that?
Deb
(7 weeks post tx and doing well, can't wait to be even better)
Anyone got the rundown on that?
Deb
(7 weeks post tx and doing well, can't wait to be even better)
Hi Deb. I'm still fighting the dragon. I haven't treated for the past 8 mon. since I got taken off the Prove 3 trial when I had viral breakthrough. Was told to stop at week 5. Keeping my feelers out for future trials - which is about all I can do right now. There's no other treatments out there for me except trials. I've got records on the way to Shands and an appt. at Mayo coming up soon. If I was stage 1 grade 1 then I'd not bother. But, with being up to bridging fibrosis stage, I feel that I have to try to keep pushing along w/trying to kill this virus and hopefully not kill myself in the process!!! You know? God is in control of all of this, because I'm certainly not.
Susan
Susan
How long post tx are you Lady? I have the same notion as you about the 16 weeks - guess I'll have to just see if I make it to 2 weeks first.
Am I the only one that has gone into this with RA??? It seems to be a huge risk and there has not been anything documented as to the results - ugh. I hate that 5% chance of going into overdrive and never returning but I hate having this virus even more.
whatsup wassup? Are you thinking of just doing the SOC? Probably not a bad idea - we want you on our team :-)
Am I the only one that has gone into this with RA??? It seems to be a huge risk and there has not been anything documented as to the results - ugh. I hate that 5% chance of going into overdrive and never returning but I hate having this virus even more.
whatsup wassup? Are you thinking of just doing the SOC? Probably not a bad idea - we want you on our team :-)
Mikkimoe, hi there. I , like you, planned to do shorter tx (2b also) but than I'd get there and be afraid to stop, so muddled on. Don't have RA (??) but terrible muscle pain thru tx, and still. Whole body, specially legs. I do want to suggest to you trying for 16 weeks tho!!!!!! Everything I have read, researched pointed to 16 weeks being much better than 12. (My Dr. also agreed with that.) I also pushed on as I had reductions in meds thru out tx. He preferred I reduce and keep the drugs in me longer. Just think on it. I know you have also done your research.
dperry, glad your feeling better and better. Will be rooting for your May SVR! You got it!
LL
dperry, glad your feeling better and better. Will be rooting for your May SVR! You got it!
LL
Its great to feel better, isn't it ? I am currently 19 wks post tx. I am Geno1A, stage2/grade2, 2nd time around, and was UND during tx at 12 wks, 24 wks, and at 12 wks post treatment, my 6 months is in May. Praying its still UND.
My hair is coming in thicker.. have baby hairs sticking out everywhere.. LOL so will have to keep it short for a while longer to get everything caught up.. Lost 117 lbs during treatment but have gained back 12 so far.. NO MORE>... I had to get all new clothes that fit.. can't afford to do that again..
Brain Fog still comes and goes at times.. but Appetite is raging all the time now.. Have to watch myself for sure. Not so pale anymore, actually have some color again. Fatigue I guess I can say is gone too.. its this dang time change that has me messed up now.. IBS is gone. Diabetes is gone. HP is gone. I feel wonderful.. except for back pain, and cramps in toes and feet at night.. and pain in my joints alot.
Insomnia is definately gone.. This is the 1st morning in a few wks that I have been up this early.. But I woke up so thirsty.. that I got up, and could not go back to sleep , so gonna cut coupons so we can go do our monthly trip to the AFB commissary..
Energy is back for sure. While on vacation the first week of march, we did alot around the house to get it back in order...
Hope you continue to feel better, and SVR
My hair is coming in thicker.. have baby hairs sticking out everywhere.. LOL so will have to keep it short for a while longer to get everything caught up.. Lost 117 lbs during treatment but have gained back 12 so far.. NO MORE>... I had to get all new clothes that fit.. can't afford to do that again..
Brain Fog still comes and goes at times.. but Appetite is raging all the time now.. Have to watch myself for sure. Not so pale anymore, actually have some color again. Fatigue I guess I can say is gone too.. its this dang time change that has me messed up now.. IBS is gone. Diabetes is gone. HP is gone. I feel wonderful.. except for back pain, and cramps in toes and feet at night.. and pain in my joints alot.
Insomnia is definately gone.. This is the 1st morning in a few wks that I have been up this early.. But I woke up so thirsty.. that I got up, and could not go back to sleep , so gonna cut coupons so we can go do our monthly trip to the AFB commissary..
Energy is back for sure. While on vacation the first week of march, we did alot around the house to get it back in order...
Hope you continue to feel better, and SVR
Where I am with that is about 95 % convinced that I don't wanna play lab rat. I have too much to do to just keep sitting around waiting for what may likely be just another phase of some study that probably only offers a 10% better chance than with SOC. Especially the part about NO RESCUE DRUGS. That was pretty much the clencher. See my post to Mikkimoe for More, or just scroll really fast for less.. Hee Hee. Bunch o' hugs, Ant B
Boy oh boy, do I ever wanna be part of the "Kick Butt Team", Dr.s ofc. never called back. That's what I get for getting all excited when the Dr. answered his own phone. He probably forgot to write it down. Sure faked me out though when he asked how to spell my last name, and said he'd call back after seeing my chart and talking with his NP. I've waited a week since my last call, so, I'll call again on Mon. The screeching witch gets greased????? Or ????? Great big ol' huggeroo, Ant B
I'm pretty much done researching and hope to start tx real soon - Have severe RA so have special precautions to take. Geno 2b - will probably only tx for 12 weeks if RVR at 2 weeks due to RA.
I'm kinda new - January...my how time fly's. We call the group who is staring now the
"Kick Butt Team" lol
I'm kinda new - January...my how time fly's. We call the group who is staring now the
"Kick Butt Team" lol
My 4 week is April 4th, not sure on the 3 mth. date. June.
Is different here and many aren't around much. I was going thru my 'watch post' list, older post (can't sleep:) and saw a lot of names that should still be in tx and not posting.
This space on the sides here has to go!!
2 weeks off .....really feeling pretty rough. It'll pass, I'll be jogging and partying soon :)
(uh huh, sure!)
Your big ones coming up! Can't wait ot see SVR from you.
LL
Is different here and many aren't around much. I was going thru my 'watch post' list, older post (can't sleep:) and saw a lot of names that should still be in tx and not posting.
This space on the sides here has to go!!
2 weeks off .....really feeling pretty rough. It'll pass, I'll be jogging and partying soon :)
(uh huh, sure!)
Your big ones coming up! Can't wait ot see SVR from you.
LL
Geno 1 post transplant currently in week 36 of 72 with pegasys and ribavirin. No rescue drugs so far and still working. Trying to hang on for another 8 months.
The issue at the LV hospital is really scary! That's going to be some long litigating! I ache for the poor victims.
Best wishes to you!
Brent
The issue at the LV hospital is really scary! That's going to be some long litigating! I ache for the poor victims.
Best wishes to you!
Brent
Good to hear you're improving even if it's not as quickly as you'd like.
that LV hospital issue is terrifying! Great that you're helping out.
I'm at week 66 of 72 and trying to stay optimistic as I approach the END!!!!!!!! ((7 weeks from now)
But even at this late date in TX I still get nasty SX surprises. Had 2 very good weeks, after 2 or 3 months of misery and thought that was it, i'd paid my dues, but . . . Nooooooo - HgB started falling again and that's put me on my a$4 again.
The good news is the wellbutrin makes everything easier to tolerate.
wyn
that LV hospital issue is terrifying! Great that you're helping out.
I'm at week 66 of 72 and trying to stay optimistic as I approach the END!!!!!!!! ((7 weeks from now)
But even at this late date in TX I still get nasty SX surprises. Had 2 very good weeks, after 2 or 3 months of misery and thought that was it, i'd paid my dues, but . . . Nooooooo - HgB started falling again and that's put me on my a$4 again.
The good news is the wellbutrin makes everything easier to tolerate.
wyn
Robert:
Those Gates of Hell are sumpin else. Believe me, I feel you.......i wish i could offer something more than...hang in there...........but trish is right, you are almost in single digits.
Trish:
Keep on keeping on! I hope the sides stay good for you. Those first injection fears are the worst and then we get all cocky about how easy it issss......
SLDB:
YAY GOOOD GOOD GOOD!!!
Deb
Those Gates of Hell are sumpin else. Believe me, I feel you.......i wish i could offer something more than...hang in there...........but trish is right, you are almost in single digits.
Trish:
Keep on keeping on! I hope the sides stay good for you. Those first injection fears are the worst and then we get all cocky about how easy it issss......
SLDB:
YAY GOOOD GOOD GOOD!!!
Deb
geno 1a, stage 4 cirrhosis well compensated, tx'd 96wks just got 18mth post tx labs,SVR continues. HEP said i could use the "cure" word at 2yrs post. Feeling great.
You GO girl! You are certainly making the most of your post treatment. I concur with RGlass - they will need experienced people around them and good of you to throw your support in there. I hope there are very few positive cases out of this.
Thanks for asking how I'm doing .. remarkably well so far. Aside from half a day of fatigue the second day, I can't tell I'm on tx just yet, aside from the daily batch of pills. My energy is good and I'm feeling no sx. I keep remembering RGlass talking about the Gates of Hell suddenly opening up....and I figure, if they're going to, they're going to so I'll deal with it if and when it happens. In the meantime, I'm just carrying on and getting in as much as I can while I feel good. Got over the first injection fears and it was easy peasy in the end. 1 week down. I'm not even thinking about how many to go. Just.. one week down. :) 2nd injection tomorrow.
RGlass...I'm sorry those gates just keep opening up on you. You have had a rough ride of it to be sure. 10 weeks to go and the countdown begins!! I hope those gates close up on you again for awhile and give you a bit of relief. I read your other post about work...and I'm very glad for you that you have an understanding boss. That happens when you've earned that from the sounds of it.. so good on you. Take care.
Trish
Thanks for asking how I'm doing .. remarkably well so far. Aside from half a day of fatigue the second day, I can't tell I'm on tx just yet, aside from the daily batch of pills. My energy is good and I'm feeling no sx. I keep remembering RGlass talking about the Gates of Hell suddenly opening up....and I figure, if they're going to, they're going to so I'll deal with it if and when it happens. In the meantime, I'm just carrying on and getting in as much as I can while I feel good. Got over the first injection fears and it was easy peasy in the end. 1 week down. I'm not even thinking about how many to go. Just.. one week down. :) 2nd injection tomorrow.
RGlass...I'm sorry those gates just keep opening up on you. You have had a rough ride of it to be sure. 10 weeks to go and the countdown begins!! I hope those gates close up on you again for awhile and give you a bit of relief. I read your other post about work...and I'm very glad for you that you have an understanding boss. That happens when you've earned that from the sounds of it.. so good on you. Take care.
Trish
I am about to start week 14 of 24. Undetected at 4 weeks. I had 2 great weeks in row with very little sx. I thought I had the sx beat. After all of the post I have read, I should have known better. Then came last Friday I did my shot and the Gates of Hell opened again. I am just now (Thursday) starting to feel decent and guess what tomorrow is, injection day. I am keeping my fingers crossed.
It is very Noble of you to work on the Support Group. You know those people are scared and need experienced support. Thank You
It is very Noble of you to work on the Support Group. You know those people are scared and need experienced support. Thank You
WOW!
TRISH: So how are you doing? What are you thinking about all of this?
ERIC: I feel a bit bad for stopping early in spite of our pact, but Gish said NO MORE. I am also quite worried about Meki. Wonder if it was time, though, for her to be out of this environment? You know how that goes....I have a way to get with her but, as before, I'm not sure if something is wrong or if this is a choice she is making....I'll do a little more research on it......How's your HGB?
ANT B:
I thought i noticed some indecision about traditional vs. study drugs (WITH NO RESCUE!!))) Where are you with that?
BILL:
You've had a hard row to hoe. Wow. I am amazed at your ability to keep on keeping on. I'm so proud of you!
LAURI:
I'm so glad you are done, when is your three month? Mine is April 8. Are you feeling any different yet? It DOES seem like a different environment around here since the change......
JOOLS:
Hey girl...let me see if i can dig some more around on meki and glad you're keeping on!
Deb:
You crack me up. I'm so proud of you. you are tougher than titanium.
GOLDEN:
YAYAYAYAYAYAY
About me?
well, 7 weeks post 42+ weeks treatment, geno 4, wild type, acute hep c. hospital acquired.
Things are slowly getting better, it's nice to not take so many pills. Shortness of breath is gone completely, hair is not falling out any more but not growing a lot yet. i have gained a couple pounds - did not realize how much lack of appetite affected my life on tx!
Brain fog is SLOWLY getting better. Have some post tx. joint pain and irritable bowel syndrome so i am still on protonix for that. Coming back from the surgery in 06 and acute hep c and treatment after that is a slow crawl for me, because mentally i want to go go go and it will take longer than that. i could still not work full time now.
litigation is filed in civil court. I am also working with Dr. Gish to get a support group together for the folks infected in Las Vegas and that will be coming up in the next week or so. That's a full time job it seems.
That's my latest.
Deb
TRISH: So how are you doing? What are you thinking about all of this?
ERIC: I feel a bit bad for stopping early in spite of our pact, but Gish said NO MORE. I am also quite worried about Meki. Wonder if it was time, though, for her to be out of this environment? You know how that goes....I have a way to get with her but, as before, I'm not sure if something is wrong or if this is a choice she is making....I'll do a little more research on it......How's your HGB?
ANT B:
I thought i noticed some indecision about traditional vs. study drugs (WITH NO RESCUE!!))) Where are you with that?
BILL:
You've had a hard row to hoe. Wow. I am amazed at your ability to keep on keeping on. I'm so proud of you!
LAURI:
I'm so glad you are done, when is your three month? Mine is April 8. Are you feeling any different yet? It DOES seem like a different environment around here since the change......
JOOLS:
Hey girl...let me see if i can dig some more around on meki and glad you're keeping on!
Deb:
You crack me up. I'm so proud of you. you are tougher than titanium.
GOLDEN:
YAYAYAYAYAYAY
About me?
well, 7 weeks post 42+ weeks treatment, geno 4, wild type, acute hep c. hospital acquired.
Things are slowly getting better, it's nice to not take so many pills. Shortness of breath is gone completely, hair is not falling out any more but not growing a lot yet. i have gained a couple pounds - did not realize how much lack of appetite affected my life on tx!
Brain fog is SLOWLY getting better. Have some post tx. joint pain and irritable bowel syndrome so i am still on protonix for that. Coming back from the surgery in 06 and acute hep c and treatment after that is a slow crawl for me, because mentally i want to go go go and it will take longer than that. i could still not work full time now.
litigation is filed in civil court. I am also working with Dr. Gish to get a support group together for the folks infected in Las Vegas and that will be coming up in the next week or so. That's a full time job it seems.
That's my latest.
Deb
may 2004 will be one year post tx for me. 6 month test determined me to be SVR.. Thank God!!
How are you doing?? Have your sides disipated any?/
How are you doing?? Have your sides disipated any?/
14 MONTHS post 72 weeks tx SVR - Geno 1A and 1B Stage 3
That's as short as I could do it. :)
That's as short as I could do it. :)
Hi Deb!
Glad to hear how you are doing. I'll be doing shot #41 on Friday. Had to go on Procrit in November. We keep trying to tweak that because Hgb goes up and then down. Geno 3, slow responder. I have a case management meeting for the divorce on the 17th. Hopefully that will get settled, cause I'm broke!
The one constant, I see about all of us. We keep on keeping on!
I'm wondering how Meki is doing too.
All the best!
J
Glad to hear how you are doing. I'll be doing shot #41 on Friday. Had to go on Procrit in November. We keep trying to tweak that because Hgb goes up and then down. Geno 3, slow responder. I have a case management meeting for the divorce on the 17th. Hopefully that will get settled, cause I'm broke!
The one constant, I see about all of us. We keep on keeping on!
I'm wondering how Meki is doing too.
All the best!
J
God bless ya Bill ! Again! (on 104 weeks!!)
Eric...ONE more!!!!!!
Hi Deb, glad to see your healing up well and SVR! (right? brain still 'gone' on vacation!)
2b. Just finished 24 weeks tx last week. 3.5 log drop week 2, UND week 4, remained thru out, but had reductions so still nervous (aren't we all!). Sure I'll heal fast as only had to do 24 weeks of these hell drugs, tho sides were still hell!
Alagirl has had a hard road, a lot of transfusions, problems. Wyntre, Merrybe. Ladywhy also struggling with problems, sides. Missy Mouse is on week 13 of 72 weeks (new post from her on other side), most the guys struggling too. Even in brain fog..can't think of too many doing 'okay' in tx right now! (not having a hard time). A lot of just starting tx-ers also, lot of fun, nice new people here. (I'm not a newbie anymore:) Lonestar SVR'd, can't think of the rest. I'll be back when my brain is, lol!
Many aren't posting as much since the big forum change and a lot aren't while in tx. Guess you know how that is!
Keep healing and I'm on to SVR and healing also.
LL
Eric...ONE more!!!!!!
Hi Deb, glad to see your healing up well and SVR! (right? brain still 'gone' on vacation!)
2b. Just finished 24 weeks tx last week. 3.5 log drop week 2, UND week 4, remained thru out, but had reductions so still nervous (aren't we all!). Sure I'll heal fast as only had to do 24 weeks of these hell drugs, tho sides were still hell!
Alagirl has had a hard road, a lot of transfusions, problems. Wyntre, Merrybe. Ladywhy also struggling with problems, sides. Missy Mouse is on week 13 of 72 weeks (new post from her on other side), most the guys struggling too. Even in brain fog..can't think of too many doing 'okay' in tx right now! (not having a hard time). A lot of just starting tx-ers also, lot of fun, nice new people here. (I'm not a newbie anymore:) Lonestar SVR'd, can't think of the rest. I'll be back when my brain is, lol!
Many aren't posting as much since the big forum change and a lot aren't while in tx. Guess you know how that is!
Keep healing and I'm on to SVR and healing also.
LL
Hi Deb-
Still plugging along here; currently in week 78/104, high-dose riba and PEG-Intron. I’ve been sleeping a lot lately, and haven’t been posting or even reading much here lately. How are things with you?
Bill
Still plugging along here; currently in week 78/104, high-dose riba and PEG-Intron. I’ve been sleeping a lot lately, and haven’t been posting or even reading much here lately. How are things with you?
Bill
I'm HCV GT 1 a VL 4Mil +, stage 2-3 necroinflammitory w/bridging, Naieve to tx, hoping for a sooner tx start date than late summer (6 more mos. :(( Already been a year, waiting ever so impatiently for this to start, (so there might be an end in site). Protease Study phase III, late summer, vs generic meds. this week? This Study has NO RESCUE DRUGS. I'm too tired to keep hopping from foot to foot!< Wouldn't that make me a funny bunny? Thanks for asking, Hugs for that, Ant B
Hi there!
I am in week 47 of 48. I just can't wait to stop!
How are you doing? We haven't talked in a while.
I am worried about Meki though. Her last post, many months ago, said she was going to Anchorage for a hysterectomy. She has not posted since then and didn't respond to mail that I sent to the website that google turned up. Have you heard anything?
I hope all is well with you.
Eric
I am in week 47 of 48. I just can't wait to stop!
How are you doing? We haven't talked in a while.
I am worried about Meki though. Her last post, many months ago, said she was going to Anchorage for a hysterectomy. She has not posted since then and didn't respond to mail that I sent to the website that google turned up. Have you heard anything?
I hope all is well with you.
Eric
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