Mike Simon Thread Continued

[jmjm530]

Mike,

The other thread was closed so I hope you didn't mind I grabbed an open slot so we can all follow your progress in one spot.

First, I guess a kind of congratulations in a weird way is in order! In fact, I think you mentioned earlier that you never thought you'd want the virus to return -- but it really appears to be the MUCH better of the two alternatives. Of really good note is that your liver is "soft" and only stage 2 out of 6. That's practically virginal!

I understand, based on some recent studies I've seen, that elevated enzymes can correlate with hepatitis C in the liver, even if non-detectible in the blood.

Assuming though that your're still hep c negative via senstive Heptimax TMA, then how will they monitor any future progress regarding viral eradication if that is their intent with the proposed peg and riba? Or, are they simply using peg and riba for mainteance until let's say Vertex proves itself -- and then they plan to try that.

Last question -- and if you're too worn out -- please don't bother to answer. When they found Hep C in your liver via biopsy, did they do any special tests to locate it -- or was it just a normal biopsy? I assume this was some special test they used since a number of people have post-tx biopsies but haven't heard any report back that they were hep c positive but VL negative.

Again, glad you're liver seems to be working out, and as for the pesky virus, I'm sure you'll have it beat. This also I guess accounts for why your wise transplant team has had your viral load tested every month after your SVR.

All the best.

-- Jim

[jmjm530]

Yes, I've been known to go very low :) Thanks for your thoughts. Hope this finds you well and improving every day.

-- Jim

[DoubleDose]

The thread below  (Mike Simon Thread Part II) is worth a full read.  TnHep spoke to several HCV related experts, with interesting results, and Willing has some excellent observations.
Since that thread is max'ed out, we might pick up with comments on this thread.

Opinions about HCV range 180 degrees, and even leading and 'venerated' medical experts often are out of touch with the state-of-the-art ideas and research.

Enjoy.

DoubleDose

[mikesimon]

I want to congratulate you on your great news. The thread above was closed so I hope you get down this low to know that I am so very happy for you. CONGRATULATIONS JIM. Mike

[cuteus]

that pill box from Roche is the best! Willing is getting a good deal there!

nice to see the golden oldies drop by, sad that it is under these circumstances, to wish our friend, Mike, the best outcome possible.

Ina, I just recently heard my home phone messages, sorry, the machine is in my kid's room as you know. I have lunch at 12:30 today, if you read this before then.
take care

[can-do-man]

Haven't been on a while. Found this site and want you to know i been thinking about you. No advice, just that your a heck of a guy and i sure hope this all works out for you. Wishing you the best of luck going forward.

[willing]

wow, a designer handbag and a video - now that's progress. I'm sorry the bad old sides are as bad as ever. Some memories are hard to shake. When I start again, I know  I'll be feeling the sx before I even fill the syringe. Still, I hope the half dose is a bit gentler.

I'm just speculating here, but the lne

HCV Titer of <30 IU/ml or <1.48 Log IU/ml

from your results looks to me as if they might have run a non-TMA serum PCR as part of the bx. The in-house RT-PCR run on the biopsy tissue wouldn't be calibrated, as standard commercial tests are, and thus there wouldn't be a way to translate the test output into copies, let alone IU.

[mikesimon]

I don't really know about personality types, and especially when it comes to my own. As to taking it lying down: I don't know what you'd have me do but it's obviously more than I am doing. I can get a Heptimax any time I want one - the script for monthly tests is written and at Quest. I had one May 3 so I can get it any time in June. I am not too concerned with what it was yesterday but rather what it will be tomorrow. I just thought I'd give it a week or so before I test. I get the results the next day so I won't be sitting around wringing my hands over it. As to when I will be undetectable with the FK reduction and the TX: I may be undetectable now as far as my serum is concerned. Right now I'd like to see a decrease in my enzymes.
willing, you may be right about the test - you know more about that than I do. As I wrote, the only description on the report was: "The test used was an in-house quantitative real-time RT-PCR assy (sic)".
Mike

[willing]

pretty tempting...maybe you can put that pill box on lay-away for me? One thing's for sure: if you and Magnum were competing for the same interferon sales job (see his "Update on Infergen torture" post above) I think you'd win hands down. All that talk about shooting the dog and strangling passing strangers really puts a dent into the carefully-crafted marketing pitch.

[mikesimon]

I am hoping that is the case. I have joined the TX club again. I got my drugs today and man, times have changed. I got a blue and red cooler handbag with the drugs and a video and all kind of meaningless junk. I shot the 90 mcg. and I think I can feel the misery already. I recall having to wait about 3 days before I felt bad but this time it seemed to hit me fast but maybe it's my overactive imagination. I will get a Heptimax next week and I'll post the results. I hate being the guy in this position but it has provided a true learning experience for a lot of us here and I can well imagine people's interest in my upcoming PCR. I can also imagine the grief many doctors will face when the questions start flying about all the things we have been discussing. And, it probably serves them right. I can not stress enough that Paulo did not seem at all surprised with my biopsy results. There was not a scintilla of surprise when he looked at my biosy which confirmed his initial call that it was HCV. It was like "yea, the enzymes are  high because of the hepatitis". I guess he's seen this enough that it's old hat to him. I can tell you one thing: it sure wasn't for me. I was floored. Mike

[drfrankenstein]

ok listwn forgt who QHO I m . WhaT i Want to know is what you ARE SAYING? Mike I know you and I trust you and I fully 1000% believe you with my life, understnd me bro? I got you! I believe YOU!!!!!!!!!!!!!!Il be back

[mikesimon]

Harley Dude/Ral - It's great to hear from you guys. Thanks so much for your kind words to me.
Mattie, if rejection is mild and caught early enough dose adjustment might fix things. The blast stops it right away and though we HCV people worry and though it does shock the pancreas(can contribute to diabetes onset and increase insulin requirements of diabetetic for a month or so...oral steroids usually follow the blast for a few weeks or a month) and it also sjocks the liver but it halts rejection and that's the killer. Just make sure that if your husband gets a dose adjustment they increase lab frequency - insist on that... I like weekly labs after dose adjustment but every other week is probably okay too - but get them and scream until you're heard if you see any changes in lab values.
Ina, I don't recall anyone specifically mentioning the possibility of relapse in the context of this particular dose reduction but HCV relapse has always been recognized as a possibility - that's why I got monthly Heptimax Tests. Yes, I would have still acquiesced to the dose reduction had it been discussed. FK is nephrotoxic and as the history of transplantation evolves the damage to the renal system has been well documented and the possibility that significant dose reductions can be made without prompting rejection is now the course that most cutting TP centers are pusuing. In the old days they'd just maintain the original dose and the renal problems would ensue and often kidney transplantion was the only option.
Mike

[willing]

OK, maybe this is mere small-print quibbling, but, until your VL test comes in, I don't believe you can be certain you've relapsed. SVR is defined by the absence of serum VL. There is very limited data on liver tissue RNA and we don't really know how many SVRs have continuing but controlled low-level infections. Perhaps I'm being foolishly optimistic, but I'd say there is still some chance the prograf dose increase will quiet the T cells back down and ALTs will return in range without the VL ever reaching detectable level.

[couchpotato]

Can't even say anything, I'm shocked to hear about the outcome of Monday's session with Paulo, just didn't think THAT would be the culprit. Have a quick question for you. IF it was rejection, is getting the "blast" the only "fix"? That damned word (rejection) is always lurking in the back of my brain and I'd never heard anyone mention it before.

Hubby found out today the TP doc's have scheduled him for a bx JUne 29. Then it will be time to decide about tx. If he does tx then the 2 of you might be doing it together. The only 2 tp recipients on the forum......Misery loves company!!!!!

Take care Mike
Mattie

[harley dude]

Hey Mike,
  Haven't been here in a long long time, at least not to comment anyway, but had to say GOOD LUCK to you when I saw your name. I know you'll be just fine, your to nice of a Guy, nice guys always come out on top. You sure were there to cheer me up when I was down in the dumps. Well Mike, hang in there and good luck. -- Harley Dude

[Wasabi Pea]

I wanted to echo Ral's thoughts and just wish you well.  I haven't been logging on as much recently, but I have always enjoyed your posts.  I have my fingers crossed for you.  You sound like you're in good hands.  Hopefully it will end up being nothing more, like you said, than a tricky balancing act between medications.  Hang tough.

[ral]

Hey Mike I have not been around much but I just wanted to say GOD BLESS and that I am thinking about you and am praying for you. All that has been said about you is right on. You are an inspiration to all of us

Your friend in this war
ral

[doglover28]

Hi Mike,

I was saddened to read about what has been going on with you.  Please know you are in my thoughts and prayers.  You've always been very helpful to me and all the other people on here.  You are an inspiration to me with your positive attitude.

Pam

[friole]

I was so, shall I say, freaked out by your post of HCV in your TP liver, I don't think I could see the big picture.  You may be embarrassed by all this attention, Mike, but it is certainly helping the likes of me to understand all the ramifications of HCV and transplant.  Now I am happy for you.  Liver rejection would be an awful turn of events.  Treating the HCV with low doses of INF and RIBA seem to be the absolutely prudent thing to do. Paulo is my hero.

So.... welcome back to the Friday Night Club (or whenever).  I am sorry to see all these relapsers recently, but I think we all need to know that this disease is still not easily eradicated.  Also I am glad to see so many old knowlegable posters coming back on board and sharing the wealth of information they have.  Sometimes in the heat of tx it is absolutley impossible to study anything - at least that has been my experience.
kathy

[mikesimon]

I think I should clarify Paulo's comment that he wanted me to stay away from the hepatologists at the center. I think what he was saying is that I didn't need to be on big doses of interferon and ribavirin and that the hepatologists might treat me like any HCV patient and vigorously attack the virus with standard doses. I may be reading a little into this but that is my belief and I certainly don't want to disparage or make it seem as though Paulo was disparaging that group of doctors because that certainly wasn't his intent, nor is it mine. It was meant more in a humorous manner when I wrote that. Sort of a little comic relief, if that term can apply to this serious thread. Again I can not express how overwhelmed I am at your wonderful reponse to my situation. I feel a little awkward and undeserving but I am trying hard to get over it. You people are just so great and you've really helped me get through this "little bump in the road". You really have and I am so touched by all of your comments. Every one of you has touched my heart. Thank you so much. Mike

[OnAPrettyPoison]

I wish you had gotten good news instead of the bad news, but it is better than the worse news.  Rest up, we are saving you room on the "GROUP W" bench!

[Pdilly]

I don't even know what to say.  I have learned so much from you and what has been said of your experience with HCV.  My gosh, if someone is testing your strength they can quit anytime as you have won.

[avidreader]

I Just want to weigh in with my good thoughts and hopes for you. You were one of the first people who responded to me when I was confused about my 12 week log drop. Your steady,kind comments to all for the year I've been on this board have been appreciated by more of us then you will probably ever know--even us only occasionally posting lurkers! Good luck to you--you certainly have Karma on your side!

Tracy

[strator]

Mike

[willing]

the transplant drs in the above paper seemed to have reached the same conclusion:
<em>"In our previous study, we reported that the late virological relapser was the only patient positive for HCV RNA in the graft at inclusion. A separate manuscript detailing our center's experience about using tissue HCV RNA RT-PCR as a more accurate predictor of SVR is currently in preparation. In fact, many questions, such as the optimal duration of therapy have still not been resolved in the treatment of recurrent HCV infection and it is interesting to speculate that the direct detection of HCV RNA may suggest longer durations, resulting in improved SVR (16,17), especially in patients with genotype 1."</em>

sounds like RNA quant of biopsy tissue might become more routine, at least for transplants.