EOT - 48 WEEKS

[frijole]

EOT – 48 – UND

I completed treatment 2 weeks ago but it take that long to get the results on the QuantaSure and I just picked them up today.  I tell you it is a long time from the last VL test at 24 weeks.  As expected, it was <2. --    but I have been here before so we shall see.  Was 44 weeks of Victrelis enough?  I sure hope so because I don’t want to do this again.

History – treated in 2005/06 with Pegasys and Ribavirin for 56 weeks and relapsed.  I went the extra weeks because I still had detectable virus at week 12 (40IU/mL) and was not UND by sensitive test until week 20.  I thought 36 weeks UND would be enough and it was not.  Should have done 72.

In the interim my liver went from Grade 1-2, Stage 1-2 in 2007 to Grade 3, Stage 3&4 in 2011, so when the PI’s were released, it was time.  I chose Victrelis because I didn’t like the sx for Incevik and was familiar with anemia.

It hasn’t been an easy trip but we do what we must.  I found the PegIntron a lot harder on my system than the Pegasys.  I adjusted to it as time went by but it was a rough start.  It may have knocked out my thyroid.  My EOT  TSH test was 5.04 – above the range – which is hypothyroid.  The PA siad it will go down but I think she was talking hot air.  My hemoglobin stayed in the 9’s (with a couple of 8s) for 60% of my treatment, even with procrit and some riba dose reductions.

From about the first week that I added the Victrelis, my ankles and feet started swelling and I had a seemingly related rash – or crazy itching on my ankles and calves.  It continued all thoughout treatment and two weeks off, it still exists.  If it does not clear up soon I will have to admit that it is from the cirrhosis, not the treatment meds.  I see a serous low sodium diet in my future.

I had 3950 IU/mL at the end of the 4-week SOC lead in.  I was UND by QuantaSure at week 6 – after two weeks of Victrelis, and remained so throughout treatment.  I was 99.5% compliant with my biggest problem taking doses in a timely fashion.  I know I missed riba twice and we found a couple of Vic on the kitchen floor one time – I think they fell out of my hand when I was in my 5am fog.

So, now we wait.  

frijole (bean)

[coeric]

hopefully 42 weeks of being undetected with the most sensitive test commercially available is a harbinger of SVR.  thank you for all your wonderful posts. eric

[belle19]

i'm sending you hugs and prayers for your SVR.  congrats on finishing tx.  good luck to you.  belle

[dointime]

Glad to hear that you are done but sorry to hear about the damage on the way.  Here's wishing you nailed the f****** virus this time,

All the best
dointime  

[his3707]

Congratulations on finishing!  You have been such an inspiration and support to me and many others!   You ARE on your way to a HEP FREE LIFE!!!!  

[kmatucson]

Ha!! Yippee!!  So happy for you Bean... Finally DONE!!!  

[BoceprevirGal]

  I really do think things will go your way this time, you were Und 2 weeks after the Victrelis was introduced, so we know that Vic does the trick :)
   I'm sending you a big hug, and you will be in
my thoughts and prayers~

[frijole]

idyllic -- I had a friend whose dad (in his 80s) and lived in New Orleans, wore flea collars around his ankles. Don't think it would help here, ha ha.  So are you taking thyroid meds? What did your TSH skyrocket to and was it tx related?   Interestingly I got a call today from my doctor's office saying they were faxing the results to my internist here in town.  I noticed when I was at my appointment 2 weeks ago that my labs were only initialed by the PA (who has given me misinformation before).  I wonder if the doctor finally looked at the labs and was more concerned than the PA.  I am concerned.

lookingforward - so you were still itching 4 weeks post?  Hmmmmm  Sometimes I wonder if I really have a rash problem or I am farming the scabs to scratch when they get close to healing (it feels too good to scratch).

ejoli - my EOT AST and ALT were 17 & 20.  At one point they were 17 & 9.  I am feeling better but I remember how sick you got post tx and am watching carefully.

thank you everybody

[Idyllic]

56 weeks was a long time to treat the first time. I still cannot believe folks used to treat 72 weeks back then.

You took a well calculated risk with the Victrelis and it seems to have paid off. Like others have mentioned in EOT posts taking (and waiting) for those SVR labs can be frustrating. You really hung in there despite all this and I hope and pray SVR for you. Like Jules said it is encouraging for those of us on the same journey. There are times I get really worried wondering if this will work or not and seeing how others made it gives me hope.

I don't know what your baseline was but 5.04 TSH is only slightly above the LabCopr reference interval of 0.465 - 4.680. Maybe on your 3 or 6 months labs you can have a thyroid panel and see the extent your labs return to normal. I would keep faith that this might happen. I mean you just never know. My TSH skyrocketed and I dread the idea of having to take thyroid meds forever.

I had to laugh when you said that about itchy ankles. Last year there must have been a new variety of flea or something in south Texas since we were so taken off guard. It was hot and we had the dogs in during the day and about a week my ankles itched like crazy. I remember standing in line trying to itch one ankle with my foot. It is a weird place to itch. Anyway, I hope the swelling subsides the longer the meds are out of your system.

Once again congrats on sticking with treatment despite the odds and crappy side effects. I hope you continue to post as you have a lot of insight and wisdom to offer.♫

[LookingForward12]

Contratulationsnat reaching the end of what has been an arduous journey for you. I just have faith that this one is the winner! Best to you!

By the way, I am eight weeks post treatment and had itching for about four weeks after I finished. I still have some post rash ski. Issues. My hair is just beginning to return ( a strand here and there). I am thinking your itching will slowly diminish.

[skiyaltr]

congratulations.  appreciated all your support and data capture.  wishing you best for SVR.

[1swimmer]

Incredible that you could keep up with the Vic, I mean what a rigorous schedule for so long. I am so hopeful that you will reach SVR.

Ahh, to sleep in, in the morning and no pills!!!
Bean, I'm wishing you the bestest forever,
C

[hrsepwrguy]

Congrats bean, wishing you all the best, will be looking forward to your SVR post

Keith

[2mlbb]

Wow Bean...you gotter done. totally done and UND to boot. Congratulations big time. You really did the big haul. What an inspiration that you have been to me and so very many others on our forum. I wish you a fast and total recovery to a much healthier you. Onward to SVR.    :)

[zako7]

Congratulations on EOT. This time around, I am sure you will prevail. You story is a great motivator and I have enjoyed your valued advise. Congratulations !!!!!!! Onward to SVR!!!!!!!!!

[Woodpeker]

Congrats and best wishes to you.

[Dawn703]

Great news, so happy for you. Good thoughts for SVR.

[slideman]

So nice to see you have done it!! You have certainly completed your part, and performed a lot of work for the good of the forum family. For me, I found it difficult to wait for the PCR's to finally be over with. Even after SVR, sometimes I cant believe its really gone. After so many bad blood tests for so many years. I still look at your charts to see the SVR behind my name, thank you so much for that. Tx is very tough, but so are folks like us!!

[stormy456]

It's excellent to see that you have successfully completed tx.  I agree with willb, I have a very good feeling about this...  Congratulations, bean.  Now go update that chart with your good news, will you?   ;)  - H

[Proactive]

Congrats on finishing your TX Bean. Best wishes for a speedy recovery and that final SVR pcr!
pro

[ejoli]

   Hi,
           I knew you could do it!  I'm proud of you for sticking it out. I know what a hard time you have had!   Wishing you some blood cells to take care of that anemia. You'll feel better once your levels go back to normal.  What are you liver enzymes now that you are done?        Don't over do it. Give yourself some time to recover. These really are some strong drugs.  Take care,    -Libby

[jsf52]

Congrats on the EOT and most importantly the UND.  You are a true champion - will keep prayers and thoughts for the SVR post that is sure to come!

[Advocate1955]

Congratulations on EOT and UND.  So happy for you.
Advocate1955

[beeblessed]

Hey Frijole,

Wonderful, wonderful news that you are finished!!!  I echo what Willy50 said and will pray all the best to you in the future.  Love how you listed the cost and number of meds.  Puts things in perspective when you look back and say to yourself, "Wow, did I really do all of that?"

Hugs,
Bee :)

[frijole]

Can-do - thanks for sticking with me.  You and Libby were my inspriation to treat with Victrelis.  3 months is a long time.  I just may ask for a 2 month VL..... and  I'd rather count birds than pills.

NY girl - hope you are right that this is the one.  I would like your take on this hypothyroid thing.  I remember you went hyper and then hypo.  I am really wondering if it will go back to what it was and I know you have talked thyroid with lots of people on the forum.