Aa
OPEN POST
Just wrote a big note to Friole, posted below under "I'm pretty upset" by ohgreat). Took a chance on an open "question" space. Here it is ... it's all yours.
______________________________________
Friole, here's what I said below ...
Hey, I am still hanging in there, for sure. I am a stubborn cuss and WILL beat this one way or the other. Initial VL was 1.3 million.
Won't get into long story, but at 24 weeks I was a non-responder to Inteferon. VL dropped to 49,000. Better than not at all, but not enough to continue w/Inteferon.
I am now on "consensus" Infergen, daily shots. Also still taking my 5 Ribavirin daily. I thought it would be terrible, but so far so good. It's only been a week, we will see what's coming. GREAT IDEA - Forget who suggested it, but called specialty pharmacy and told them I needed to inject with THE smallest needle possible, like maybe neo-natal. I got it and cannot even feel the injections. Y'all remember that if you have to go to daily.
My PCR will be done every 4 weeks for at least 12 weeks. Depending on my response, and how I'm handling daily stabbings, I will continue to one year with daily shots OR stop all meds and wait for a clinical trial for slow/non-responders toward the end of this year.
Sides so far include losing about 80% of my hair ... now can appreciate what folks with bald heads go through in winter. I'm freezing without a hat! And the ever loving riba rash. Those are the two biggies right now. Oh, Procrit of course, and my best friend Paxil.
I'll try to keep you posted, feeling better now. You are rig
______________________________________
Friole, here's what I said below ...
Hey, I am still hanging in there, for sure. I am a stubborn cuss and WILL beat this one way or the other. Initial VL was 1.3 million.
Won't get into long story, but at 24 weeks I was a non-responder to Inteferon. VL dropped to 49,000. Better than not at all, but not enough to continue w/Inteferon.
I am now on "consensus" Infergen, daily shots. Also still taking my 5 Ribavirin daily. I thought it would be terrible, but so far so good. It's only been a week, we will see what's coming. GREAT IDEA - Forget who suggested it, but called specialty pharmacy and told them I needed to inject with THE smallest needle possible, like maybe neo-natal. I got it and cannot even feel the injections. Y'all remember that if you have to go to daily.
My PCR will be done every 4 weeks for at least 12 weeks. Depending on my response, and how I'm handling daily stabbings, I will continue to one year with daily shots OR stop all meds and wait for a clinical trial for slow/non-responders toward the end of this year.
Sides so far include losing about 80% of my hair ... now can appreciate what folks with bald heads go through in winter. I'm freezing without a hat! And the ever loving riba rash. Those are the two biggies right now. Oh, Procrit of course, and my best friend Paxil.
I'll try to keep you posted, feeling better now. You are rig
I guess I read your original post wrong. What you say makes sense.
I got to keep reminding myself that you have the girlie-girlie genotype :)
---------------------
As an related aside, if I remember correctly, pre-tx your doc was going to do a 48-week course and changed his mind based on your RVR at week 4, and probaby -- just a guess -- on some data then just coming out regarding RVR and the shorter-course treatments.
Both of my consults also put a lot of weight on RVR -- the whole "trump" thing -- yet, my tx doc seems somewhat stuck on my pre-tx negative predictors such as age and histology, and of course, the big one -- geno 1. Do wish I had more clarity, but for now it looks something like 60 weeks, but who's counting at this point :)
BTW CDM has suggested I may be sucking up to you for the xtra riba you reportedly have lying around. No idea where he gets that idea from. BTW have I told you recently, what an asset are you are to all of us here at MH?
-- Jim
I got to keep reminding myself that you have the girlie-girlie genotype :)
---------------------
As an related aside, if I remember correctly, pre-tx your doc was going to do a 48-week course and changed his mind based on your RVR at week 4, and probaby -- just a guess -- on some data then just coming out regarding RVR and the shorter-course treatments.
Both of my consults also put a lot of weight on RVR -- the whole "trump" thing -- yet, my tx doc seems somewhat stuck on my pre-tx negative predictors such as age and histology, and of course, the big one -- geno 1. Do wish I had more clarity, but for now it looks something like 60 weeks, but who's counting at this point :)
BTW CDM has suggested I may be sucking up to you for the xtra riba you reportedly have lying around. No idea where he gets that idea from. BTW have I told you recently, what an asset are you are to all of us here at MH?
-- Jim
My Doc was pretty clear that his recommendation would be to stop at 26. On the otherhand, he recognizes it as a guessing game, and if I know all the inputs, he's willing to let me share in the guess. It's a gray area, without an obvious right or wrong decision. He supports my self determination, and I appreciate him for it. 26 and out for me.
It's confusing enough when different doctors give different opinions regarding tx length.
It can get down right unsettling when your own treating doctor starts vacillating, as also happened to me recently. As you know I ended up extending to 60 weeks. Intially a hard pill to swallow as I had sold myself on 48-weeks based on two well-respected consults, but the extension is now something I'm comfortable with and I'm back to a ten-week countdown, once again. :)
As you say, no hard data to show the benefits of extended tx in those with RVR/EVR. But then again, why would your doctor "support" you to extend? Sometimes you wonder how much they really know. All the best whatever you do. No crystal balls here.
-- Jim
It can get down right unsettling when your own treating doctor starts vacillating, as also happened to me recently. As you know I ended up extending to 60 weeks. Intially a hard pill to swallow as I had sold myself on 48-weeks based on two well-respected consults, but the extension is now something I'm comfortable with and I'm back to a ten-week countdown, once again. :)
As you say, no hard data to show the benefits of extended tx in those with RVR/EVR. But then again, why would your doctor "support" you to extend? Sometimes you wonder how much they really know. All the best whatever you do. No crystal balls here.
-- Jim
Just got back from the nurse who gives me the procrit shot and my HGB dropped to 8.7. Last Thurs. I started taking procrit every week, todays shot is the second given a week apart. I'm really WORRIED about them taking me off meds because of the HGB and that I have Thalassemia.
BB
BB
Procrit and/or changes in Procrit dosage can take up to 4-6 weeks to fully kick in. If you not getting them already, weekly (or even more frequent) CBC's are not a bad idea until you stabalize. Hopefully you'll see things better next week. Sorry you're having not only to go through the sides of tx but the anxiety of possibly having to stop or dose reduce. I know I've been in that spot myself.
-- Jim
-- Jim
No use in trying, if its not go go go its leave leave leave.
Oh well i see my "hint" to these gals about their minds always being in the gutter didn't help. Go fiqure
Oh well i see my "hint" to these gals about their minds always being in the gutter didn't help. Go fiqure
<i><b>goofy: GO, GO, GO!! longer! come on!</i></b>
Gee. I've never heard *that* before....
<i>If longer tx does not do it, what does?</i>
Extra riba is my egg basket du jour.
They have data that says not clear at 4 wks and clear at 12 could benefit from extra tx, but dare I say it...... RVR is the trump card here.
Studies say that 12 or 16 weeks should have done the trick for me. I'm going 26, with extra riba for almost the whole ride. I can only hope that's enough.
You're not the first gal to tell me longer is better, but I've always held that it doesn't apply in my case.
Gee. I've never heard *that* before....
<i>If longer tx does not do it, what does?</i>
Extra riba is my egg basket du jour.
They have data that says not clear at 4 wks and clear at 12 could benefit from extra tx, but dare I say it...... RVR is the trump card here.
Studies say that 12 or 16 weeks should have done the trick for me. I'm going 26, with extra riba for almost the whole ride. I can only hope that's enough.
You're not the first gal to tell me longer is better, but I've always held that it doesn't apply in my case.
In this situation it would be great if there was a convienient and economical way (Fibroscan specifically) to evaluate post TX liver histology without invasive bx. If relapse or breakthrough, the improved liver condition, if any, from TX could help those to decide to go at it again right away or fight another day with new meds down the road. It will be a new HCV day if/when Fibroscan and the new drugs pan out and are available.
goofy: GO, GO, GO!! longer! come on!
I agree, with geno 3, there is not enough data to promote longer tx, but then, what the heck is at work with more relapses than geno 2? If longer tx does not do it, what does?
all tx:
when the end of tx approaches, it comes down to what do you fear most: the meds or a relapse? Relapse fear seems to be winning the race for now.
I agree, with geno 3, there is not enough data to promote longer tx, but then, what the heck is at work with more relapses than geno 2? If longer tx does not do it, what does?
all tx:
when the end of tx approaches, it comes down to what do you fear most: the meds or a relapse? Relapse fear seems to be winning the race for now.
Saw my Doc yesterday. He asks how I'm feeling coming ito the home stretch? Expecting reassurances, I explained I was getting the predictable cold feet so many of us experience.
His response? Well, I'll support you if you want to go an extra six mos.....
Ack!! Ohhhhh Noooooooooo Mr. Bill.....
We discussed how there's no data supporting a geno 3 RVR extending six mos. No telling whether odds are improved 10%, 3%, or 0%. Intellectually, it just don't add up.
BTW, I'm going 6 mos total, another 4 injections.
His response? Well, I'll support you if you want to go an extra six mos.....
Ack!! Ohhhhh Noooooooooo Mr. Bill.....
We discussed how there's no data supporting a geno 3 RVR extending six mos. No telling whether odds are improved 10%, 3%, or 0%. Intellectually, it just don't add up.
BTW, I'm going 6 mos total, another 4 injections.
Still have around ten or so weeks left with no final decisions until I speak with my doc again. My hgb has more or less stabalized in the 12's so I'm sticking to 1200mg/day
of Riba which has been my usual dose for almost all of treatment.
As far as "flushing" the riba out -- the only thing I'll probably want to do is flush any leftovers down the toilet. LOL. But seriously, riba has a long half life so I suppose the flushing process will take place in a gradual manner as soon as I stop.
-- Jim
of Riba which has been my usual dose for almost all of treatment.
As far as "flushing" the riba out -- the only thing I'll probably want to do is flush any leftovers down the toilet. LOL. But seriously, riba has a long half life so I suppose the flushing process will take place in a gradual manner as soon as I stop.
-- Jim
Good points. I agree the emotional does enter into the tx decision but in my case this was further compounded when my treating hepatologist came up with a different conclusion from my two consults thereby putting me into an intellecutal conflict as ell.
As far as advising people, I think the best way is to lay out as much information (studes, anecdotal, personal opinion) as possible so folks can make their own decisions. But always be clear what is based on a study, what is based on anecdotal, and what simply is your opinion.
Therefore, when I say I'm going to treat for 60-weeks, I'm always careful to point out that the 60-week recommendation was made by my treating hepatologist (because of age and histology) while two equally qualified consults looking at the same data only recommended 48 weeks.
My *opinion* is that this may have something to do with the fact that the other two hepatologists treat with Peg Intron and not Pegasys, but I have no facts to back this up and freely state this. It may also simply be that there is too little data accessible on geno 1b's who are over 50 with stage 3 and with RVR's.
My *decision* to treat for 60 weeks is based mostly on the suggestion of my treating doctor, but partly I'm sure about the emotional insecurity that you talk about. But one thing is sure, at some point, all of us have to take our last shot and let things fall where they may. Good topic.
-- Jim
As far as advising people, I think the best way is to lay out as much information (studes, anecdotal, personal opinion) as possible so folks can make their own decisions. But always be clear what is based on a study, what is based on anecdotal, and what simply is your opinion.
Therefore, when I say I'm going to treat for 60-weeks, I'm always careful to point out that the 60-week recommendation was made by my treating hepatologist (because of age and histology) while two equally qualified consults looking at the same data only recommended 48 weeks.
My *opinion* is that this may have something to do with the fact that the other two hepatologists treat with Peg Intron and not Pegasys, but I have no facts to back this up and freely state this. It may also simply be that there is too little data accessible on geno 1b's who are over 50 with stage 3 and with RVR's.
My *decision* to treat for 60 weeks is based mostly on the suggestion of my treating doctor, but partly I'm sure about the emotional insecurity that you talk about. But one thing is sure, at some point, all of us have to take our last shot and let things fall where they may. Good topic.
-- Jim
Oh no, I am thrilled to be at this spot, but I am not taking any of this for granted, know it could be another story any time. I treated now because it was good time in my life to do it. Good insurance, flexible schedule if I needed it, Well, um, there is that not getting any younger thing. I probably got this in early 80's (well pretty sure, diagnosed NonA/NonB, they thought it was my BC pills. I wanted best chance of SVR, and I would have stressed more had I waited five or whatever years for the new drug. My personality type is the let's get the bad over so we don't have to worry and they we have can fun and just not worry about it anymore!
You guys are both in the homestretch now, Jim 6-8?, Goof 2-3? Some prior discussions were around the theory of building the riba levels early in tx with the concept of lowering toward the end of tx. Goof is a lttle closer than Jim. Goof just reduced, sounds like grudgingly (a little riba jonesing perhaps)and Jim a few weeks later. With the riba-induced problems you guys have had do you plan to reduce further, or reduce at all? I think I know the answer but I wanted to throw it out there for others who are considering or may be in a similar position. And, when you do finish do you have any specific tactics for flushing that stuff out? (ie ACV, herbs, Drano, power flush with coffee)
hey i'm 'sucking up' 6 ribas a day,and it's workin..(knock on wood) but that don't mean i gotta like the ****!.....if need be,if warranted i will take more for a longer period-like yu,i'm doin a personal countdown:34 to go!.....i remember readin posts about those lookin forward to peg-shot....my best day use to be just before shot,now it seems my body craves the stuff-very worrisome? is vrus rallyin in the trough? i am still waiting on my 12 week vl test..somebody goofed& i got tested for HIV...lucky they still had enuff blood drawn from week 12 to do over.......aww heck,i gotta be responding,but this suspense adds nothing to my quality of life-just more time to reflect on my path to CLEARANCE!!!!!!!!!-we definately live in interesting times,Cheers
Hey all - YES! I did get sleep last night. Woke up once with a subdued itch and put some sarna(menthol-camphor OTC strength) an d then it was bsck to ZZZZZZZZ. Thank you. Bob the hyroxyzine they gave you is the Atarax pasoperson and cuteus also suggested. Alsthough mine are 10mg but maybe because I'm barely 140# now. Question though, mine says 1 every 6hrs. I'm a little hesitant about trying it during the day, especially if I go to work. Don't wanta be too tired or cross a wire someplace and put all of us in the tri state area in the dark. Well- that'd be a stretch but you know what I mean. Any of you use it during the day?
Beamer- HOW you doing? Happy seeing you up and posting. That happened to me last year,pre tx, they tested for HIV instead of a HCV PCR. All's I knew was it was it was 2 weeks waiting, then they told me I had to take test over, no comments when I asked why, then more waiting. My doc finally told me and of course just said the good news is I was neg for HIV.
Don
Beamer- HOW you doing? Happy seeing you up and posting. That happened to me last year,pre tx, they tested for HIV instead of a HCV PCR. All's I knew was it was it was 2 weeks waiting, then they told me I had to take test over, no comments when I asked why, then more waiting. My doc finally told me and of course just said the good news is I was neg for HIV.
Don
prettypoison -- nothing pretty about those cute little pink pills. How nice of you to buy a computer to join us!!!! Remarkable progress. Contgrates. Try some Nioxin for the hair - seems to have helped me. Welcome
goof -- can't believe they want to boost your hgb during the last 2 weeks or treatment. Sounds weird to me. Are you going to continue the PRocrit after tx until your system builds back up (I hope)
jarman -- that totally suxs on the PCR. At first I thought you were saying your vl went up 2x - but I think you were saying you stayed on teh double peg for 6 weeks - is that right? What after this PCR. Will you try the infergen if this is not working?
beam -- good to see you. Are you taking the PRocrit? How are the shots going and do you see any effect yet?
strator - I am glad you finally are getting some relief on the itching. Don't ever think any side is a minor side and not worthy of discussing. I am just glad the meds you found and the OTC stuff in helping.
goof -- can't believe they want to boost your hgb during the last 2 weeks or treatment. Sounds weird to me. Are you going to continue the PRocrit after tx until your system builds back up (I hope)
jarman -- that totally suxs on the PCR. At first I thought you were saying your vl went up 2x - but I think you were saying you stayed on teh double peg for 6 weeks - is that right? What after this PCR. Will you try the infergen if this is not working?
beam -- good to see you. Are you taking the PRocrit? How are the shots going and do you see any effect yet?
strator - I am glad you finally are getting some relief on the itching. Don't ever think any side is a minor side and not worthy of discussing. I am just glad the meds you found and the OTC stuff in helping.
Friole: <i>can't believe they want to boost your hgb during the last 2 weeks or treatment. Sounds weird to me. Are you going to continue the Procrit after tx until your system builds back up (I hope)</i>
Doc has just hit his limit on the hgb - thinks I've been under 10 for too long. My most significant sides have been cognitive and fatigue, and he doesn't want to risk those becoming long term. I think my trip into the low sevens bought me higher scrutiny. Risk/benefit analysis: I seem at higher risk than many and have less to gain since I responded well early on. I'll keep on the procrit 'till hgb looks better.
FLguy: You've always been a riot, but you're getting sharper these days. Nice to see you feeling well. Circles in deed, LOL.
<hr>
FLguy raises an interesting topic I've been chewing on lately. We all know I have a bias against these meds, and I support shorter tx protocols, etc. But interestingly, when it comes to my case, I seem to go the other way. Stretched 16 weeks short tx to 26 weeks. Letting hgb go lower than prudent.
I think part of this comes down to a question of intellectual decision making vs. emotional. Jim may have touched upon this in a post a few weeks ago. Unbiased analysis says that stepping down the riba at this point makes sense for me. Continuing past 26 weeks does not. But it's hard to separate the emotional from the analytical. I think it's something for each of us to consider when we make choices about whether to treat, dosaging, durations, etc. How would we look at these issues were we advising someone else?
Food for thought anyway.
Doc has just hit his limit on the hgb - thinks I've been under 10 for too long. My most significant sides have been cognitive and fatigue, and he doesn't want to risk those becoming long term. I think my trip into the low sevens bought me higher scrutiny. Risk/benefit analysis: I seem at higher risk than many and have less to gain since I responded well early on. I'll keep on the procrit 'till hgb looks better.
FLguy: You've always been a riot, but you're getting sharper these days. Nice to see you feeling well. Circles in deed, LOL.
<hr>
FLguy raises an interesting topic I've been chewing on lately. We all know I have a bias against these meds, and I support shorter tx protocols, etc. But interestingly, when it comes to my case, I seem to go the other way. Stretched 16 weeks short tx to 26 weeks. Letting hgb go lower than prudent.
I think part of this comes down to a question of intellectual decision making vs. emotional. Jim may have touched upon this in a post a few weeks ago. Unbiased analysis says that stepping down the riba at this point makes sense for me. Continuing past 26 weeks does not. But it's hard to separate the emotional from the analytical. I think it's something for each of us to consider when we make choices about whether to treat, dosaging, durations, etc. How would we look at these issues were we advising someone else?
Food for thought anyway.
Speaking of open posts! Where and how are you all? I'm sorry if I've missed posts by any of you the last few days but I'm pretty much a frikkin 'Ditz' as my son says. Says that's why he's studying hard, so he can put me in a 'home'.
How bout a checkin?
Took Dad to the hospital for a urinary infection yesterday. His doc says 'How's your appetite?'...Lousy Doc, that's not like me I love to eat." I chime in.."hey thanks, I didn't realise you like my cooking.".. 'Trust me it ain't your cooking I miss, I just wanta live."
All Be Well,
Don
How bout a checkin?
Took Dad to the hospital for a urinary infection yesterday. His doc says 'How's your appetite?'...Lousy Doc, that's not like me I love to eat." I chime in.."hey thanks, I didn't realise you like my cooking.".. 'Trust me it ain't your cooking I miss, I just wanta live."
All Be Well,
Don
Good morning,
Hope your feeling better today. Sorry with all going on at work. What month will you be done with tx, I for got?
BB :)
Hope your feeling better today. Sorry with all going on at work. What month will you be done with tx, I for got?
BB :)
Beagle: Let me handle that one for NY, That Girl has got a lot o'stuff going on right now and she needs a little schedule help. He biggest challenge right now is to make sure that she does not walk out the door with one 6-inch spike shoe and one flat. She could spend the day walking in circles. Her week 24 should be aprox 2/24 and her 48th around mid Aug. She will be clear later this month.
You have the same attitude as me (I got this about the same time as you and only found out in August). Kill it now who WANTS this creepy stuff inside of them if they can help it? Yuck.
Here's to killing all of the cooties off for good!
Here's to killing all of the cooties off for good!
Welcome aboard, glad you decided to post, "i think". Wonder though, this low vl, little damage, clear at 12 and 25, hardly any sides, feeling fine, and then theres that WOO HOO.
You just wouldn't happen to be a "rubbing it in to us poor saps" here would ya? :)
Just kidding ya, glad your winning and having a mild time of it.
Hope to see you post more often, and also ONLY 895 ribas to go? you need to get with jmjm530 here. I thought he was the only one that new the exact number of those ribas. Good luck to ya.
You just wouldn't happen to be a "rubbing it in to us poor saps" here would ya? :)
Just kidding ya, glad your winning and having a mild time of it.
Hope to see you post more often, and also ONLY 895 ribas to go? you need to get with jmjm530 here. I thought he was the only one that new the exact number of those ribas. Good luck to ya.
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