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Avatar universal

can-do-man couldn't this time

Hello all, not around here much anymore so most people might not remember me. And most people who do try to forget me. :) Just found out that i relapsed. Disappointed sure, shocked no. As i'm sure not alone in the relapse class. knew the odds was very much against me. Time to figure out plan B now.

Hope the gals around here have been behaving. (not really)

For all the people who is in tx. or getting ready to start don't let this discourage you as alot of people beat this thing. And soon i think we all will.

Now back to misbehaving as i have more fun that way.

Can-do who can but couldn't this time but will.
65 Responses
86075 tn?1238115091
aaaah shoot, our friend Ina had mentioned that she couldn't get a hold of you lately, and she was worried about this, just wishing you the best....and there will be a plan B that will work for you, like so many others...miss your humor around here too...be well Canny Man....
Avatar universal
I don't know what to say. Hopefully the time on the tx drugs has bought your liver a little time. You probably need a rest now, but have you looked into any of the Vertex trials? It was really good to see your name on the board but not like this.

All the best,

-- Jim
179856 tn?1333547362
OH no..........I"m so sorry my friend I had wondered what happened to you since you didn't post or email me anymore.

I'm so sorry for this news - oh man that just sucks.  Have you been looking into one of the trials or doing an extended treatment at all?  It did work for Kalio and I and we were really lookin' like we wouldn't get SVR ever if you remember.......

Oh I'm so sorry.  You've always been one of my very favorite people on here and I am just so saddened.  I was sure you'd made it through just fine and were out there enjoying life and had no reason to post at all.

Plan B has worked for MANY of our friends in here as you've seen so don't you dare give up.  It was so great to see you had posted - but not like this.

I hope you hang around and chat with us again - we could always use your wonderful personality and attitude in here regardless of anything.

Debby
Avatar universal
I'm very sorry to learn about your news. I was so hoping that you'd beat the odds. Good luck, Mike
Avatar universal
Forsee, thanks and have you took the plunge yet? And how are the california girls doing? Seen the beach boys a few weeks back. Oh geez not the same as 30 years ago. :)

Jim, good to see your still around. Hope all is well, hope you gave up creame de what stuff, You had be worried. Any suggestions?

Angel, hope all is well and glad your not behaving, its to late in life to change us now. :) As for plan B don't know????????

NY girl, How in the heck have you been? I haven't been around to drive you any more crazy then what you are.:) As for extended tx. I did a total of 86 weeks so i guess i need to try something new.

Thanks people, i got alot of laughs here....... Now back to being bad.:) Want any ice-cream little girls?

Can-do

Can
Avatar universal
Thanks mike, you been there and more. Hope all is still going good for ya.
Avatar universal
Cando: Jim, good to see your still around. Hope all is well, hope you gave up creame de what stuff, You had be worried. Any suggestions?
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Any suggestions?

It depends on your skin texture and coloring. I actually did give up the "creame de what" but would glad to give you my overstock. Thought you would be the last to visit the otherside, but ya never know.

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Or maybe you were asking for tx suggestions, wasn't sure. Let me know and I'll be glad to share whatever I know, but I did forget most of your treatment history and stats except that you were stage 4.

-- Jim
223152 tn?1346978371
The dreaded post.  Darn it. Zach.  It was not supposed to happen.  I guess that means you will have to keep on popping in occasionally to see if anyone has come up with a new treatment.

Like Jim said, you have probably done a world of good for your liver.  I think you said you printed off the thread about all the vitamins and such recommened by HR that would help fibrois.  Are you going to take that to your happy hepo and get his take?  

I guess all you can do right now is heal from the treatment and take a breather.

frijole  
96938 tn?1189799858
Sorry to hear the news. I hope you can take a little more recovery time and come up with good advice and a good plan.  For me (and still don't have 3 month pcr yet) it was a matter of longer and stronger with the emphasis on stronger. Hope you have some breathing room to possibly include other ingredients with soc.  Take care cdm.
Avatar universal
It depends on your skin texture and coloring. I actually did give up the "creame de what" but would glad to give you my overstock. Thought you would be the last to visit the otherside, but ya never know.
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Thanks but no thanks on the cream de what stuff, Still on my side of the tracks andd have no plans on going to the other side. If i do i have left orders for people to just shoot me.:) Like they wouldn't like to anyway.

Geno type 1b, stage 4... Slow responder, didn't clear until around week 24 had a 3 and a half log drop at week 12. Extended from 72 weeks to 86. Had a script for 12 weeks more at week 72 plus a extra two weeks that was given to me at week 48 in case my insurance gave me trouble.

Waited for 14 weeks post tx. to have my PCR done. Found out today my viral load was 470,000 was unde from week 24 though the end of tx.
Avatar universal
Speaking of vitamins/supplements and such, an interesting recent thread on HCV friendly botanicals. And, as you may know, good ole' Coffee has shown to potentially have protective properties with the liver.
http://www.medhelp.org/posts/show/373346
Avatar universal
The relapse isn't surprising given your slow response combined with stage 4. I'm assuming this was the first time you treated?

Suggestions other than "Creme de What":

(1) I always believe in getting as much info as possible before moving on. In your case that might be another biopsy and/or Fibroscan to see what's going on inside.  I'd suggest both if feasible. Fibroscan mostly in trial here in the U.S. but you can check with the following center:
http://clinicaltrials.gov/ct2/show/NCT00125762?term=fibroscan&rank=1
Also, Dr. Eugene Schiff in Florida has a private scan and "HR" also has scanned folks here. A post or private mail to "Forseegood" should put you in touch.

(2) More brainpower also helps. Not familiar with who you were treated with. GI? Hepatologist? Ice Cream maker? Never know.

But it really doesn't matter who, I'd still get another opinion -- or two or three -- depending on logistics, resources and energy. The more brains you get working for you the better. At this point, think of each of these doctors as consults, not doctors, and collect as much info and ideas as you can. Of course, bring along your entire medical history, organized up a bit, along with all blood and procedure reports and the original biopsy slide set, not just the biopsy report. What part of the country are you in btw?
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Anyway, that would be how I personally would start to approach things. First, find out where you're at now in terms of histology and speak to as many experienced clinicians as feasible looking for ideas. I would limit my list to hepatologists. Here's a short list of some very good ones and a day or two spent traveling might just be worth it.

Dr. Nezam Afdhal -- Beth Israel Hospital, Boston. (Has a Fibroscan)
http://tinyurl.com/nbavn

Dr. Ira Jacobsen, NY Hospital, NY (Will not take insurance, around $600 for consult but well worth it by all accounts. NYGirl saw him and gave a big thumbs up)
http://www.cornellphysicians.com/imjacobson/

Dr. Douglas Dieterich, Mount Sinai Hospital NY.
http://directory.mssm.edu/faculty/facultyInfo.php?id=21794&deptid=18

Dr. John Mchutchison, MD, Duke
http://www.dukemednews.org/experts/detail.php?id=356

(3) There are lots of new (and old) things to consider when treating again I could go into, with the new PI's (like Vertex/Telaprevir) leading the list. Other things worth mentioning are: Alinia, phlebotomy, double-dosing, pre-dosing ribavirin, etc, etc, -- but I really think that is putting the cart before the horse. The horse again being to collect information -- biopsy and/or Fibroscan -- and then get some good input from the brains in the field who will have the advantage of having your entire medical records in front of them.

(4) Take that job as "Pool Boy" you've been looking for. Find the right pool and nothing else will probably matter.

-- Jim
Avatar universal
Forgot a few for that consult list, and this list is by no means complete:

Dr. Eugene Schiff, Miami
http://www.med.miami.edu/med/faculty.asp?id=34887

Dr. Donald Jensen, Chicago
http://www.hcvadvocate.org/Medical_Writers_Circle/jensen.htm

Avatar universal
FLguy, been wondering how your second go with tx. went. Hope your post 3 months pcr is good news. Used to live in south FL (hollywood) so maybe a trip to see Doctor Schiff and a second opinion from him. Thanks and best of luck to you.

Jim... Lost that "Pool Boy" job, i was a day late and "something" short... Oh yeah a dollar short i think.:) Seeing a Hepatologist thats head of the liver department here in Indiana at I U medical center.

If your into cornfields Indiana is a exciting place to be. Cornfields come in handy for the side of the road stops sometimes. Corncobs can be a little rough though.

I agree a second maybe a third consult is needed..... As i told FLguy i used to live around where Doctor Schiff is so maybe his opinion and maybe a fibroscan wouldn't be a bad ideal.

I can't see going the same route tx wise without some changes;

can do.....Still pushing his ice-cream
Avatar universal
I'm verry sorry to hear the news. It's already crowded here on  the relapse bench, but hey, we'll scoot over and make room. I'm going to chime in on the bx/fibroscan song for two reasons. First is that particularly with 86 weeks of tx there may be good news there and it'll take some of the sting out of that vl test. Second is that monitoring and reducing fibrosis seems more on point than eliminating the virus. If that long a tx didn't do it, it looks like anything short of taxidermist-like dosages of ifn/riba isn't worth pursuing so the options would seem to be  maintenance with/without anti-fibrotics pending the arrival of new options.  Take good care - it's not much comfort, but you've got plenty of company.
173975 tn?1216257775
I'm so sorry to hear of your relapse.

best of luck in the next round.

wyntre
Avatar universal
Doggonit cando im sorry to hear this, but i bet your liver got some good healing on it...im trying to remember some kinda creme you almost used or did use that was your wifes and we all got a kick out of that...hope your feelin good and eatin good again....good to hear from you....
Avatar universal
Willing, glad to see your name again and thanks for the seat on the bench. You allways seemed to have much knowleged on hep-c. Great respect for you and the way you handled things. Thanks and hoping the best for you. Now move your butt over.

wyntre9, Thanks and was wondering how things were going for you?
108191 tn?1199599905
I don't come on much these days, waaay too busy with, ahem, a new martial arts regime.  

I feel awful that the tx didn't work for you!  After so many months and back it comes, major disappointment.  Something will come around to help you get rid of the virus.  At least that is what I have been hearing.  My next door neighbor is a research virus doctor at the UW, I will ask him if he has heard of anything developing on the HCV front.  He is an incredibly bright guy.  Thanks for coming online to let us know.
Avatar universal
LOL, oh my does that bring back memories. The creme was metro-gel, and they have different kinds. The one i used was for your skin and the other one is for, well "womens infections" so when my wife called our family doctor to order me some somehow he thought it was for her and called in the wrong one.

I should have known better but like allways didn't think and used it anyway. My hepo and his office staff had a good time with that for a long time.

Hope all is well with you and thanks for the laugh as i thought everyone had forgotten that.

can-do tried but the cream didn't work. :)
Avatar universal
Thanks, you back to breaking bricks with your hands again?

Note to all..... Be nice to anise....   OUCH
Avatar universal
I agree that at least one eye should be on monitoring/dealing with fibrosis -- but the new Halt-C data is very discouraging in terms of Peg "mainteance" if that is what you were referring to.

-- Jim
254544 tn?1310775732
From one relapser to another.... I'm so sorry.  

Mouse
P.S.  I'm starting my second round of tx tomorrow.
Avatar universal
can-do-man...good to see yr handle but bada55 news ...ya did all the time,trx and poison anyone could do...sorry to hear that the poolboy job didn't work out for you..but i'll bet the ice cream brings out the best in them indiana corn-fed gals...nevr mind about the cobs,use them stalks for cover
willing-   a taxidermist-like dosing-HAW.....i think we all got stuffed on the sh!t
anise-you can come up north and split wood any oldtime
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