thanks for the update. I had missed your earlier post. Interesting theory about residual hcv as a diversionary tactic for keeping the immune response busy ..I wish it workedfor me! I'm bothered by various minor auto-immune issues (hayfever, psoriasis, lately some neuropathy); sure wish those T cells would find something better to pick on - like my HCV-infected cells.
The Sirolimus sounds promising - I was laboring under the illusion there were no proven anti-fibrotics - and I'll read up on it; anti-fibrotics are part of my near-term strategy as well.
Be well!
PS - next time I happen to see HR around I'll have to ask him about that test as the details (intra/inter cell) still bother me. When they extract the needle it seems they wouldn't collect any more than a couple of MLs of blood (far less than in a standard test). and by the time you extract serum there's even less..I wouldn't have thought there was enough for a serum-based assay.
Im so glad to hear you are doing so well! I hope you have a peaceful and joyous Holiday! Keep up the good work.
It was in the serum collected with the tissue sample. Did you happen to see my post that according to my surgeon when transplants completely eradicate the virus they are prone to rejection problems? Presumably the virus has immunosuppressive properties and that would figure since because I have such a tiny bit of HCV in my liver my immune system must be involved. I would assume that in the SVRs who show HCV on biopsy their immune systems must too be working to keep the virus at bay. When it no longer has to concern itself with that task it gets perky and decides to get rid of the liver. My surgeon basically said that maybe a little HCV is a good thing for me. Of course, now that they know that rejection might be a concern with complete eradication they could tweak the anti-rejection meds to protect against that possibility.
Regarding my changes I know what he's doing:
1)He lowered my Prograf dose to spare my renal function because tacrolimus is nephrotoxic.
2) He added Sirolimus aka Rapamycin/Rapamune. This is an immunosuppressive drug used primarily with renal transplant patients which has been shown to halt fibrosis in rats. It is used by Boston Scientific to coat their stents because it keeps them open and functional. I believe that my guy thinks that any slow ongoing fibrosis due to the HCV can be slowed or halted with this drug if it works in humans the way it has been shown to work in rats. I feel a bit like a rat.
3) He stopped the low dose Cellcept (mycophenolate mofetil) because, though it was once thought to be a good drug for HCV, that is no longer the prevailing belief.
I can't argue with any of the changes, with the possible exception of the rat drug, but I would have preferred to make one change at a time. Like stop Peg/Riba and see how I do. Then cut Prograf and see how I do and then switch the Rapamycin for the Cellcept. That sounds reasonable, doesn't it? I like to try the conservative approach when it's me who is the patient.
I hope you're feeling healthy and happy willing and I wish you a wonderful Holiday and a prosperous and healthy New Year.
Mike
Bill: great attitude, great results. Best of luck!. und @ 8 sure is a good motivator. The stats you quoted look like a CME course slide on the importance of weight-based dosing.
Mike, glad to hear you're laying off the hard stuff again. Take care.
All: happy holidays!
(and least this post not be forum-appropriate). Nice article ( <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17124290&query_hl=2&itool=pubmed_docsum"?Pfingsten'06</a> ) in 12/11 Science on ribosome binding to a viral IRES, including reconstruction of of the virus' docking to the ribosome. This only applies tangentially to HCV, but protein synthesis is a key early step in HCV's replication and the IRES is the most conserved part of the HCV genome - hence my personal favorite for a drug target it won't be able to mutate away from.
Thanks Kathy. I am ready to kill my surgeon. Just when we really got to talking he was called to surgery - someone was lying there waiting to be transplanted and as you know these cadaver transplant surgeries aren't scheduled - when a liver becomes available things have to move at the speed of light. His beeper went off and our discussion came to a grinding halt. But not before he discontinued Peg/Riba, reduced my primary immunosuppressive by 33%, eliminated my secondary immunosuppressive and initiated another new immunosuppressive drug. Now, when I see the slight increase in LFTs I have no idea whether it's to be expected immediately after the discontinuation of the Peg/Riba or, if not, which of the other 3 changes is responsible. There are too many variables for me and notwithstanding the enormous respect I have for the guy I don't like the myriad changes in my drug regimen. I reordered and received all of my old drugs and am seriously considering just changing back and sitting still for a couple of weeks and then seeing him again and gradually moving toward where he wants me to be - like one change at a time. I may just get my license and start practicing medicine too - do you think I'm too old for that? I hope you're feeling well and I wish you a joyous Holiday Kathy. Stay well. Mike
So you stopped the inf and riba. I am glad to hear it. I will be really anxious to see how it goes too for you. I understand your insecurity when there is even the slightest elevation in those liver enzymes. Please post what happens. I hope you will get to feeling better after the nasty drugs leave the system. Happy Hanukka, Mike.
Kathy
Bill, I am impressed with your tight glucose control. If you're averaging in the 60s at home then your HbA1c might very well be valid. That's quite a low average and though I am tightly controlled I am not down that low. I average in the low 90s. When I was treating I had an HbA1c of 2.5 and that's when I started researching to try and figure out why it was so low. Sure enough it was due in part to hemolytic anemia.
About me: I am still undetectable <5 IU/ml per Heptimax on 12/18.
I stopped the half dose Pegasys and ribavirin 10 days ago. I am starting to feel better but my doctor changed my drug regimen around and I am a little stressed until I see how my labs look. I had labs 12/18 and my LFTs are within range but they did inch up a bit and I always hate to see them head in the wrong direction. I will get labs again Tuesday and then I'll know more. So, all in all life is good. Thanks for asking Bill.
I am rooting hard for you Bill and I truly believe you are going to make it this time. Take care of yourself and have a wonderful Holiday.
Mike
Hi there my fellow sacramentan... Glad to hear that your sides are do-able amazing since you are on such high doses but that just might be all that wonderful exercise you are doing. I wish I could do even a quarter of that. and UND so early, sounds like you are well on your way to slaying that dragon this time.
I am on week 22 and on rescue drugs for both wbc and hgb but all is well here and things have evened out too.
Hope you have a great christmas. Nicki
As I said, my surgeon got called to surgery so it was just a mention of the test and I could have misheard or misunderstood but it sure seemed like he said "serum". I'll check again when I see him about all the other stuff. Take care. Mike
eh.. must need more coffee , that would be <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17124290&query_hl=2&itool=pubmed_docsum">Pfingsten'06</a>.
Mike - I'm glad to hear you say that, since I had wondered the same thing. I can see the argument for trying everything at once at the time he put you on the meds, but after the enzymes stabilized, varying one variable at a time would seem to give more information. Did you ever get a chance to ask about whether that RNA was measured in tissue or blood extracted during the bx?
i would never forget such a nice guy as you...glad to hear your news, hope things continue to go well for you...as stated before you are "the man"...how you fit that regimen into your life boggles my mind...good for you!
and sincere wishes for a joyous holiday!
~michelle
You are looking good! My case was somewhat similar to yours, but in your case you are getting an early response. Do the 72 weeks just to make sure you dont relapse. Your doing 2000 mg. of Riba, and still having a decent RBC level may mean that you do not easily metabolize the Riba. Good move, and if you start dropping in the red cell area, try Procrit first before reducing dosage. I 'squeezed' the vial of Peg-Intron too, and ended up doing almost double the standard dosage. I am now 3 yrs. + SVR. Hang in there, you have a long and winding road ahead, but it looks like you are tolerating very well! Best of luck, and happy holidays!
DoubleDose
Sounds as if you are doing much better. I have not figured out how to get the time and energy together to exercise. I want to but just can;t get myself there. Maybe I need to get on automatic pilot.
Happy Holidays to you.
Pat
Hey Bill I remember you!
I am so glad to hear how incredibly you are doing! People who aren't treating yet REALLY need to see reports like yours. Most of us are such WHINERS that we scare people!
Let's hope the rest of your journey is just as successful as it's been so far!
I dare to say it sounds like you are cured, already. :)
Desrt-- Wow! Quick ciphering there! I saw your comment last night but didn't have time to respond. Yeah, by my math the 150 mcg/.50 mL becomes 202 mcg/.68 mL. Thanks for confirming that, though. Glad to know I'm 'The Man', but I'm a simple guy; I'd be content with 'The Cure', LOL!
Take good care, Bill
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FLGuy-- Thanks for the kind thoughts. Tx groove is a good way of putting it. It is indeed like arriving at some sort of stasis; although I've got tremendous respect for these drugs, maybe I'm getting just enough attitude were they're beginning to respect me a little too, ya think?
Wonderful to hear you've cleared so early; hopefully that will be a precursor for things to come. If you get a moment, let me know what your Tx strategy is this go around, will you?
Wishing you all the best, Bill
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Awww, geez Ina-- Always good words from you... thanks a bunch, gal! BTW, I figured I better not get sick this time or you'd drive down to Sacramento and force feed me coconut macaroons and sauerkraut... LOL, I think I'd rather have the diarrhea back than that!
Enjoy your holidays, chickie! Bill
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MBB-- Wishing you well in your travels. I remember your fight with the riba and your Thalassemia minor condition- can't help but think that may have contributed to the relapse. Any plans for re-treatment in the near future??
Best, Bill
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Mr. JimJim!! Wonderful to see you sticking around to help all of those still punching their way through this cr@p. My Hgb response is actually quite similar to last Tx-- previously I bottomed out around the low 12's as well, and that was at 1800 mg/day, if you recall. My best wishes to you, Jim; take care, Bill
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Elaine, I've been thinking about you and Nick lately; has he been in a position to get to UCD yet for evaluation? It'd be nice to see if they would consider him for maintenance therapy, if nothing else. GI've him my best and stay in touch, Bill
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MikeSimon-- Thanks also for the nice words... as a diabetic yourself, I thought you'd appreciate the 'tight BG control' I mentioned above. My last HgbA1c came back at 3.5; I realize that glycosylated hemoglobin results can be "skewed" due to hemolysis, but this number seems to be concordant with my home test results. I have been averaging in the low to mid 60's with the home unit, so maybe this confirms the A1c results? What's up on your end with that 'anomalous' intracellular PCR assay? Are you still on maintenance? Bring me up to speed if you get a moment, OK?
Best to you Mike, Bill
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NYG-- thanks for taking the time to stop in! You must be getting ready to call this round quits, huh? I assume you're still trying to complete @ 72 weeks? With all the nasty sides you've experienced, my heart goes out to you gal... Merry Christmas to you, Bill
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DD-- Thanks for your input as well. You gave me quite a bit of good advice in here, well, a year and a half ago now. I remember you're story as well. BTW, I'm treating with a large West Coast 'interferon mill', and the NP down there mentioned she has seen a noticed a really wide spread in the way patients tend to metabolize riba as you stated in your comments. Until HPLC-UV testing is approved for serum/riba quantification, anemia *seems * to be the only barometer we have at this point to help guide us to a therapeutic titer. It appears to me that Peg/riba will be around for the indeterminate future, even with the possible introduction of the upcoming PI's? Maybe there will be enough interest left in riba to finally be able to quantify serum levels? Just some thoughts... Take care, Bill
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Hi there Michelle! Always good words from you as well. The only way I can manage the time for this stuff is that SSI put me "out to pasture" earlier this year. Otherwise I would be way to busy taking care of the business to take care of my health, LOL!
Be cool, and thanks for stopping by, Bill
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Debbe-- Sounds to me like Santa already stopped by your place earlier this year with Greg's SVR package in hand.... Remember, he knows who's been naughty or nice, so be good for heavens sake... Bill
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Pat-- I mentioned above that the only way I have time to work out is that SSI stepped in... otherwise I agree. It's ironic as h3ll that I had to get too sick to work in order to find the time to begin a fitness regimen, huh? LOL! I can't remember where you're at in Tx right now, but if you see this and have a moment, bring me up to speed, OK? Take real good care, gal-- Bill
Oops, we cross posted I think, Kathy! I missed you in my reply, anyhow... By the way, how you doing, gal? Have you had a post Tx assay yet? I haven
Dang, Bill, I guess you missed it. I relapsed. I need to join the Bill1954 fitness program. Will you sign on as my personal trainer?
Seriously, as soon as the Peg and Riba left the system I relapsed. 3 mo post VL was 680,000 IU and 4 mo post VL was about 360,000. Liver enzymes are up, higher than pre tx. Can't really understand that. I am still trying to sort it out and figure out what to do. I have an appointment with a specialist in Dallas in April (figured I better make some money first). since my bx was 1/1 I really could get away without treating now, but I am not getting any younger (turned 59 a couple of weeks ago). would like to lose 20 lbs before that April meeting in case I do decide to treat. (thus the need for a personal trainer)
Miss you on the board Bill, but I am not here as much lately either. Take care, Kath
Thanks for sharing. People like you give me will and inspiration which is something we all need. I hope you continue to do well. Careful not to over do it.
I enjoyed reading your story and especially part 2. It appears that things are going really well for you this time around. I wish you the very best of luck. Happy Holidays. Mike
Congratulations Bill. Off to a great start! Wouldn't be surprised if your weight loss is making a big difference in response. Forgot, but it seems your response to riba is a lot better this time (as measured by hgb drop) perhaps due to weight loss, dosing or a combo.
All the best,
-- Jim
My hat is off to you!!! Being able to do what you do on that much riba, all I can say is your the MAN. I'm a 2B that treated 24 weeks and relapsed after 2 months. Please us posted to how this works for you.
Beagle
It's not possible to forget a nice person like you.
Tx surely treats all of us differently. You are lucky so far, count your blessings and hope it remains this way.
Have a wonderful holiday Bill, and I too look forward to the next update.
Did you notice we have 2 hep forums, the other just got up and running a few days ago. Still some bugs over there.
Ina
So glad you dropped in to keep us posted, I know many of us were waiting to hear an update. Happy to see you're in good spirits and doing well on treatment. I think it's a good idea to extend your tx time to 72 weeks, as dreaded as that is, better than having to treat a 3rd time.
I hope you and yours are set for a wonderful holiday season. It's an opportunity to be released from the grip of this monster, and reflect on what is truly beautiful.
Take care,
Debbe
Good of you to check in and update. I am amazed that tx is going as smoothly as it is -- It has got to be your determination and excercise and diet regime. (or your experience???)
Happy holidays to you, Bill. I wish you all the success in the world.
kathy