New Tx Plan

Okie-dokie,

I haven't been in here for a while. For a refresher, here are my stats:

51 year old Caucasian male
Genotype 1a
Grade 2, stage 3.5
226 lbs
Diabetes M. type 2
Dx with HCV 12/04
Treated with Pegasys/ Copegus total 56 weeks, from 2/05 through 3/06.
Slow viral response at 12 week assay, so increased riba from assigned 1200 mg/day to 1800 mg/day.
Became undetectable to <50 IU by week 20.
Relapsed within 30 days post Tx.

I recently saw a new hepatologist, and have come up with plan B. I'll be treating with Peg-Intron 150 mcg/week, and 2g ribavirin/day; the treatment duration to be determined by my individual viral decline slope. PCR's at baseline, 4,8,12, 24, and EOT. Will extend if necessary to maintain 36 weeks past non-detectable.

Health Net of Northern California approved the off-label dosing of ribavirin within hours of submission, to the amazement of the RN/coordinator. She deals with quite a bit of off-label Rx, and told me up front that I might have to appeal this one to the state insurance commissioner.

The pharmacy wanted to ship on the 17th, but I told them to back-burner it until I contacted Commitment to Care. The good folks there took my application over the phone, and assured me that I would qualify for assistance with the IFN. My co-pay with Health Net was 30%, so this will save me a considerable amount over the course of treatment. The ribavirin is now generic, so my co-pay on that is only $15.00/month.

Hopefully, I'll start back up within the next ten to fifteen days or so; make some room on the sick bench for me will you?

Be good all,

Bill

[Kalio1]

I'm scooting over! there is room for you of course!
Sounds like you are a man with a plan. I am so glad it worked out and the ins. ok went smoothly, that is rare indeed. Though I am sorry you have to retreat, I am glad to have such a good guy join us on the bench!


Do you think you can talk the doc into doing a 24 hour PCR too? I hear that is predictive of SVR. Sincce they are being so accomodating maybe the will throw that one in too.

[Mister beagle bailey]

Glad to hear your starting tx again, this time you'll beat it.  I wish you all the luck and just know we are all here for you.

Beagle :)

[jmjm530]

Sounds like back on the horse, albeit a stronger one :)

Yeah, Weight-based Peg Intron sounds right for a big guy like yourself.

Since you apparently are somewhat going the high-dose riba route, have you considered pre-dosing with riba say a few weeks before treating and possibly adding Procrit to the mix to get your serum riba levels up even higher. In the Swedish study, everyone ended up on Procrit (epo) but IMO it wasn't just because they were anemnic but because it allowed them to take more riba -- sorta the same thing but a different take. Anyway, something to talk to your new doctor about.

And as I know you're aware, some preliminary riba saturation studies suggest that at higher levels (and I think 2000mg/day qualifies) you might want to split the riba into three doses for more bioavailability as well, and of course  take the riba with at least a moderate amount of fat and no antacids, flax, etc.

Lastly, since this is the second go around, I hope your new doc will do viral load "reality checks" at week 4 and 12 at a minium, and ideally weekly from week 1 until you become non-detectible.

Mauka just posted -- see below -- that the new doc on re-treatment is doing a week 2 PCR to see if it's worth proceeding beyond that point. I thought it very enlightened. Also , if you haven't seen it yet, Mike Simon posted (see below) an excellent link to an article that summarizes many of the newer treatment protocols.

All the best and let's knock dem virus dead this time.

-- Jim

[fishdoc]

good luck. We are all on this slow train together.... I saw snails passing us by yesterday!!  Good luck, grit your teeth, and dive in... the water sucks, but hey, what can you say??

[goldyn]

Sounds like you got yourself a good recipe , thank goodness the insurance is pulling through, you sound like your in a good frame of mind to all the best of luck to you.

[friole]

whoa, that's a mega dose of riba -- is that 2000 per day?  I like the amount of PCR's you will get.  I hope committement to care comes accross.  Does your insurance pay Procrit?  Bill, it sounds like the right thing
k

[Bill1954]

Hi all;

Kalio- Thanks for scooting over; there always seems to room on that d@mn bench, huh? I must have missed the info on a 24 hour PCR. If you have a link handy, I'd appreciate it. I haven't been in lately, but from what I can gather, I understand they reclassified you as cirrhotic? If that was via biopsy, how did they obtain a sample will on Tx? Was it Percutaneous needle sample? Thanks for the good words, and best of luck,

Bill
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Beagle; thank you for the kind thoughts-- I hope you are doing well and enjoying what looks to be a possible SVR status? Take care,

Bill
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Jim-- some interesting thoughts there;

Pre-dosing does sound interesting; I'll check with my doc; I'm not sure I want to push the insurance any harder at this point, but I'd think the clinic would have enough extra riba to take me 2-3 weeks. Thanks for the ref. to Mauka's thread- however, I think I'd probably continue on through 90 days, even if my response was less than adequate initially.

I was talking to an educational RN with Schering Plough at a local support group in town last week. She appeared to be a really sharp gal, with an extensive background in oncology, and several years in hepatology. I asked her to address the issue with riba/antacids, and she said that the official party response was that it didn't affect bio-availability. She also noted that this was her personal understanding as well. This contradicts the discussions I've had with two or three local pharmacists, who said it would be a good idea to space the antacids 1.5 to 2 hours away from the riba. Again, I guess if we're concerned, let's err on the safe side.

Hang in there, buddy-- and let us know the results of the big six month post coming up.
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Ms Consuelo dos gatos-- thanks for the good words. From what I gather, you're in for the long haul now; I'll be giving you some company shortly. See ya soon,

Bill

[mikesimon]

Good luck Bill. Mike

[Kalio1]

funny you mention that I asked the doc the antacid question he said it was a nonissue but the pharmacist said it was an issue and take them spaced a few hours apart like Jm and others have said.. I agree with you, better to err on the side of caution and take them at different times.


I kept bugging the doc about worrying about my liver condition sincce I didnt have a biopsy he says it isnt needed because all my testing came out showing no issues and regardless of what I found I woulld still be doing the same thing anyway and that he doesnt do biopsies for "curiosity" sake but to make tx decisions. He broke down and had me get a CT scan (w and w/o contrast) and the finding was cirrhosis. luckily no other probs were found though my spleen is slightly enlarged.  Not good news, but I am glad I do know. The only thing it changes is my doc wants me to do maint. if I achieve SVR. He is still  confident I will achieve it this time, Im a bit more of a skeptic. We relapsers have reason to be skeptical!
It was the final push for me to stop smoking so it was a good discovery in that regard. Early cirrhosis can be SO dang sneaky and give no clues to your doc or to us.

[jmjm530]

This suggests antacids do reduce riba bioavailablity by 14-16%.
http://www.medsafe.govt.nz/profs/Datasheet/c/Copegustab.htm

Although it says "no clinical relevance" -- all that means to me is that they haven't done any studies on it. Since there are good alternatives -- actually better alternatives -- to antacids such as PPI's like Nexium, or H2 Pumps like Zantac 100 -- it seems reasonable to err on the side of caution and to distance antacids by 2-3 hours from the riba.

== Jim

[bobbyullc]

goooood luck!

[Better_Angels]

Bill:

I'm glad to see you're already getting back on the horse. Decided against the infergen huh? Probably a good move, Greg swears it "ruined" him. Of course, I don't think he's ruined at all, but I'm biased.

I have to tell you, I have no confidence in the stat, numbers, probablilties, possibilities, magic or potions. Greg was undetectable the first time around at 18 days, and the second time by day 10. Didn't mean anything in the end.

I think you know now that it's just about what feels right to you. If it helps mentally, take the tests early. Anything that makes this a little less ex-cru-ci-at-ing.

I have a soft spot for relapsers, so I'm cheering for you.

Be as well as you can,
Debbe

[tulsatime]

Looks like we both start second round about the same time. So ya'll make room on the bench for me too. That darn bench is just too big!! Good luck, Talk to you later, Debi

[dyce]

Bill , hope this rd . of tx does the job. I believe the pegintron is a stronger dose if I remember right. Thats a lotta riba but if I recall yur stats right , your a big man and need the higher dose. Idon't see how anything can live in this body I got , with thease drugs flowin thru, so I'm sure a this round you'll beat it.

  Jim, thats is a good soundin idea , the swedish study. If they would control the anemia from the get go , this tx would be alot easier. Thats a little temptin ha jim , get the 2000 mg of red blood cells busters goin(LOL) No doubt your glad ta be off this stuff.

[amirtracy]

just wanted to wish you luck. you're one tough cookie! plenty of room on the bence but you might want to sit on the other end- shaving and showering are low on my list lately. takes entirely too much energy. LOL. best of luck, tracy

[Bill1954]

My goodness; thank you all for the good thoughts!

Golden; you said"...you sound like you're in a good frame of mind...". Thanks for the complement, but I assure you it's only temporary ;-), take care, Bill.
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Kathy Beans, I seemed to have managed at 1800 riba through most of my last Tx without epo; using Hgb as a barometer, I never dropped below 12.3. I'm hoping for the best this time as well (gulp!). Did I hear you say you were an ex-Buckeye somewhere here? I'm Cali native, but received honorary Ohioan status after working in Columbus on and off for three years. How are you feeling since you've been off the battery acid and rat poison for a bit?
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Mike-- as always, it's good to hear from you. It looks like I'll be around for a while longer, so I'll catch up with you soon--
------------------
Kalio; FYI-- prior to last treatment, my ultrasound revealed splenohepatomegaly, with "pronounced" enlargement of the spleen. I had another ultrasound last week, and in a comparison the previous enlargement was non-existent. My doctor said this was probably due in part to histological improvement from the last Tx. A hearty congratulations on giving up the fags. I was puffing 2.5 to 3 packs a day for many years, and quit cold turkey 3 years ago. Man, that was probably the hardest thing I've ever gone through; I was sick as a dog for a while... One little trick I used was postponement; the cravings came over me in waves, and I noticed if I just waited a few minutes, the worst would pass. Eventually, I found that minutes, then hours, and even days would eventually pass where I'd "forget to want". For myself, I expect the want to be there as long as I live-- but it is way controllable now, and I rarely think about them anymore. It's hard to describe the freedom that we feel now, huh? No problems with long flights, waiting in line at public places, etc. Take good care, gal; and I'll see you on the other side of the rabbit-hole-- Bill.
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Dyce, thanks also for your good thoughts; I couldn't work through Tx as a carpenter-- I think of you often working your @ss of in that humid summer h3ll, and wonder how you do it... be good, my friend--Bill
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Debbe-- It's funny you mentioned the Infergen. I was fully expecting that as the next move; but my doctor told me up front that he wasn't a big fan of CIFN. Although he said he would prescribe it if I wished, he said that none of the SOC meds stood out larger than the others for relapse/non-responders. He claimed that for every study showing Infergen as being more efficacious than Peg Intron or Pegasys, he could produce contradictory studies as well. The side effects coupled with the fact that daily injections are harder to remain fully compliant with for many patients makes him a little wary of Infergen. This is a really large west-coast interferon mill he's running, and I decided not to even *try* to argue with him. You're right; it's gonna work or it won't... Hope Greg feels better soon, Bill
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Tulsa-debi; maybe well be shot buddies, huh? Thanks for checking in-- it looks like I'll be in good company now-- stay in touch, Bill
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Bobbyullc-- glad to hear you're off this cr@p finally- let us know how your post-PCR's are doing-- Bill
Tracy; I tend to get a little ripe myself during treatment-- I think I'll just snuggle up with you on that bench, figure I won't stand out as bad that way ;-). Stay in touch, and I'll be joining you soon, Bill

[Better_Angels]

Cuteus,

Aw, thanks for remembering. Actually, what's funny is I think Greg's story shook you up so much I remember you were going to do a 9 month PCR just to make sure between 6 months and 12 months you hadn't relapsed. I stopped by and saw that indeed you had taken that additional PCR and I saw again when you reached your SVR at 12 months. I should be better at posting "congrats" though, and I'm sorry I didn't drop a line But, I did smile and nod my head when I saw your results. Good, good, good...

We don't know if Greg will SVR yet or not. When this Infergen treatment ended, he decided on larger intervals between PCR's because he (like me) doesn't have much faith in the results. He did however take 1 PCR at 7 weeks because he was convinced he relapsed again, but lo and behold it came back undetectable. He is going to do a 6 month though. We are going to ask for a TMA so it will be sensitive down to <5. I'm going to follow your lead and ask for a 9 month too, just for my own peace of mind.

If Greg doesn't SVR this time, we don't know what we'll do. He probably will do maintenance and wait for the newer drugs. His concern is the virus will damage all the improvement we've seen in his liver. You know how it is, it's a wait and see life.

Glad things are well for you. Really glad...

Debbe

[mikesimon]

Regarding the spleen: I've told this before you if you've heard it I apologize. My spleen was so enlarged pre-transplant that my dentist would comment on it and once when I brought my Akita to the vet he said "hey fellow, you've got a pretty big spleen on you" and he wasn't talking to my dog. Anyway, when I awoke after transplant I said to my surgeon "hey, I had 2 gallstones I forgot to mention, did you do anything about them?" and he said "you don't have a gallbladder anymore - we took it with the liver". I said "how about my spleen?" and he said "You still got your spleen. When we perfused your liver your spleen shrunk like a balloon when the air is let out of it - it was normal size in no time". The point is that when portal hypertension is relieved the spleen responds quickly so I would assume your liver architecture has improved significantly if your spleen has shrunk. Mike

[Bill1954]

Elaine; good to talk to you again. I hope your son is feeling even just a little better after his bout with Infergen. I've heard from others here on the forum that that stuff has teeth-- hopefully, Nick will start to recover soon.

I've been busy with insurance and doctors, as you mentioned: but I'm also guilty of being a little flaky when it comes to posting comments in here. Sometimes I take a break, just to get away from all the liver talk; it's nice to at least try to have a life outside of HCV now and then.

I appreciate the offer of help, and I might take you up on that sometime. Hmmm... Hugs are always welcome... If you want/need to contact me, you can always leave me a Private Message (PM) or my e-mail is listed at Linda's Aussie site: http://hepcaustralia.thruhere.net/.

Thanks for thinking of me, and stay in touch--

Bill
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Kathy McBean, OSU alumnus eh? GOOOO BUCKS!!!!!! Yeah, it's a little dusty out here, huh? I was working off the 270 outer belt near Georgesville Road in S.W., and then on another site closer to... say, Bryce and Reynoldsburg. Real pretty country back there, but the humidity just about cleaned my clock in the summer. I'd come home now and then for a long weekend, and every step I took it felt like I was raising a cloud of dust. I just always assumed the rest of the country was dry all summer like it is here, LOL.

Yeah, ditto on the Fishdoc metabolism thoughts as well. My new doctor was amazed when I showed him my last Hgb profile; and this clinic handles a *lot* of HCV patients. They are principal investigators in ongoing clinical trials, and highly requested for national and international speaking engagements. I guess this is just kind of unusual; he was more than happy to jack up the dosage and see what happens, though! Regarding increasing the riba above 2g, as you mentioned; I guess well wait and see. These guys seem to be aggressive, and work off-label frequently; I sure wouldn't discount the idea just yet.

Tune in, turn on, drop out. Yup, was there too. If I see the late Dr Leary blowing around in the wind, I'll say hi for ya. Take real good care, and stay in touch, gal-- Bill

[cuteus]

Bill, you did the 36 wk past undetec the first time and did not work, why not go for 72wks total?  just to play it safe?

debb. how are you? you don't post enough!  I will always remember Greg's case, because I was befuddled by his relapse!  He did infergen and did not SVR?  Man! that is tough to take!

folks' Greg is the member I mentioned a while back, when someone stated that they never saw a person posting a negative PCR at 6 month and show relapse at the yr mark.  Unfortunately, it was Greg, the one who had to be the unlucky minority.  
Early response, PCR negative to <50 at month 6 post tx, and relapse by the 12 month PCR.  Hearthbreaking to see!
what is greg doing these days, Debb?

Bill, please consider going longer than 36 wks from clearing...

[Bill1954]

Mike; Holy ****, that's scary/funny; and no, I've never heard you mention that story before. That would be wonderful news if I

[friole]

Yes, I will always be a Buckeye at heart. I was raised in Parma, suburb of Cleveland and spent 3 years at OSU in Columbus so know that part of the country well too.  I miss it terribly - have lived out here in West Texas 30 years and will never get used to the lack of water.  I also did spend 3 years in your state - San Franciso -- you know, the old turn on, tune in , and drop out.

Sounds like maybe you have the same kind of constitution as fishdoc's with the Ribavirin.  If the hgb doesn't drop below 12 this time will they consider increasing the dose?
kathy

[cuteus]

that is GOOD news deb! 7 wks post tx is real good, but I know what you mean, you two have been through that same path before...TMA negative at 6 months should definetely be a GREAT indicator!  I am so hoping for you guys.  When is the 6 and 12 month PCR?

[Tater-ToT]

bill, I almost missed this...

congrats on getting started again.... but geez I do NOT envey you..... I cringe for you... bless your heart

I have to tell you that(FOR ME) that insurance situation & only approving for 90 days would bug the stew out of me, I don't think I could rest easy out of FEAR of a Lull in my TX to make the switch-over!

I mean, okay you get the 3 month test ... then have to wait a week to 10 days to get your results.... then you have to fill out the paper work for the old insurance, & the paper work for commitment to care... & that takes an additional 2 weeks....

Uggg, do you see what I mean.... that's gonna be cutting it to close for comfort.... (Of course I am merely speaking from my own experiance that went askew)... is there anyway to get like 1 month ahead on your scripts before you start to avoid that uncomfortable possability?

I mean suppossedly that shouldn't happen, but it can!
:)

[FlGuy]

Good luck as you start again.  I'll be behind you - restarting in mid October.  When it comes to all that riba, I read that one of the riba manufacturers is now making them in 200, 400 and I think 600 mg capsules.  Counting out 10 a day would be depressing and they wouldn't fit in my pill box.

[friole]

tator is right -- maybe yu should start looking to qualify for the peggasist program so ou won't have a lapse is treatment!!! wouldn't hurt.  

Yikes! You came up with my real name!  How did you do that?  Better chill on that -- of course, if anyone recognizes me here - well ,,, welcome and lets talk.  You are right about Ohio humidity.  Can't take it now.  Yep - it is a comfort knowing that Timothy is floating around, isn't it
k

[FlGuy]

You're going to do fine.  The whole thing requires pacing in all that you do.  It will be a long haul and I found it best for me to take it in small steps.  I caught myself thinking yesterday 'One of 48' and put it quickly out of my mind. All that the first one is, is a prelude to the second.

[merlino]

Hi, I see you will be tx around same time as me. Hope all went well with your Dr.'s appt. My vacation was wonderful. Actually put Hep C and other issues away for the week and rested well.I couldn't believe it, I was up at 6 every morning, took a long walk on the beach and didn't feel tired. Its amazibg what your frame of mind can do.  I haven't felt this good in a long time,  but reality sets in rather quick.

[merlino]

My Dr.'s appt is Sept 19. So what ever bloodwork is required and time it takes for meds to arrive will determine exact date. I know you don't think its wise but I have decided not to tell my kids unless its absolutely necessary. I have managed in the past to work and do the mom thing no matter how sick I was so am hoping I can do the same on tx. Their dad is about the same no better but no worse (yet). Hopefully next yr this time you and I will be UND and finishing tx and ready to live again!!!!

[Bill1954]

Hey Vicki! Yeah, I hear you. The pharmacy that I use is located in Orlando, and last year they had to change all the shipping dates due to a hurricane warning; I got my dope on time, but it was a close call. I remember you going through all that **** last time; it's enough to p!ss off the pope, huh? My doctor's nurse/coordinator said she deals with this all the time; hopefully she knows what she's doing. On my part, I'm going to wait a week after receiving the meds to start TX, so I have that one week buffer in front of me to help deal with things like shipping problems, etc. Thanks for thinking of me, and give 'em hell at the airports,

Bill
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FLGuy-- looks like I'll have good company this go around. I wish it didn't have to be this way for either of us, but I figure if people like us didn't relapse, they'd have to change all the stats. Regarding the riba, I thought I would put them out on the coffee table along with the M&M's and hickory-smoked almonds. Kinda get a party atmosphere going... whaddya think? Take care, and stay in touch--

Bill
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Kathy-- OMG, I can't believe it!! So sorry, I was just fooling around! I remembered when you first came on board and responded to someone's question about how you arrived at your screen name. I think you said something like "frijole is a play on words from my ex's last name" or something like that. For some reason, that has stuck in my brain all this time and I just made a WAG (wild a$$ guess)!! I can't believe I spiked it! LOL, it won't come up again, promise. Thanks for checking in, gal--

Bill

[Kalio1]

You are so smart! What a good idea to wait a bit before you start tx to give yourself a cushion. Eliminates stress and if they goof up the send date or there is a holiday you are covered.
Told my husband you are starting up again ( he knows you as Bill the carpenter) he's a carpy too over thirty years, now he's superntendent and does more pointing and talking on the phone but you know how it is once a carpenter always a carpenter. First thing he said was " holy s__t how could he do construction on this stuff?" I just dont know how people do it,when Strator would talk about crawling thru attics I couldnt believe he kept that up for so long!  I am glad you have your disability situated. You really planned this well. It's gonna fly this time for us both! Thanks so muh for the input about your spleen and so glad tx was beneficial and it is now norma size! I look at my relapsed tx time as a positive too just knowing I suppressed the virus but to have actual proof histoogically is so cool.Means you are starting with a liver/spleen that is better off this time and that has to help.

About the 24 hour PCR somone in here mentioned it is preditive of SVR, I tried to find the article that was sited, I think maybe it was from Clinical Options the one about treatment strategies but I just cant seem to find it. I was just thinking if you could swing it it would be another arrow in your quiver of confidence that this time you will hit that SVR target.

[FlGuy]

Welcome back. Sounds like you had a real vacation. I plan on starting sometime in October.  I've got a few things to take care of first, referrals to GI, Hemo and Endocrine for all the baselinng and rx's.  Then should be good to go.  I'm starting out at a lower weight than the first time and with 50% more riba so going in a little leery.  Only decision is which peg to use.  Got clear with perintron the first time, but didn't really like the redipen.  Do you have a firm start date?  Talk to the kids?

[Bill1954]

Geez, Kalio-- I wish I could take credit for the "wait a week" tactic regarding the meds, but I saw it posted in here over a year ago. LOL, thanks for the compliment, though; I've learned over the years to take'em when we get 'em ;-). This bout with disability is an eye-opener for me; 30+ years in construction and I've never filed for workman's comp, unemployment, or anything else. I always looked down on seemingly active individuals who collected disability; now I know better. For instance, the last three months or so, I've been perfectly suited to return to work. However, I'll lose my benefits by doing so, and have to re-qualify. This SSI system is intended for permanent disability, and doesn't address the needs of those like us. Oh, well-- I'm done with my rant for now; thanks for checking in, and I'll talk to you soon,

Bill


Chevy! How was your trip up north? Glad to see you back in one piece; drop me a line if you find the time and fill me in on the details. I hope you caught up with your friends and enjoyed yourselves-- talk soon,

Bill