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
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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