Hep C Discussion Forum

It all started in about 1980-give or take a year when I made a poor decision in reguards to the administration of a popular drug of that era. I carried on for about 1 month. Well thats all it took for the dragon(HCV) to find a new home! IN ME! I had no idea what i was flirting with. My friends seemed healthy. Aids had just shown up,but only in the big cities,and remember-my friends are healthy looking. I contracted HCV not aids.I never gave it a second thought. BIG MISTAKE. Some time later that summer one of the gals that I had been sharing the party drug with informed me that she had been diagnose with hepatitis. Thats All I was told, so off to my doctor and sure enough I got Hep also. It was the non-A-non-B. variety.  It would be 9 more years before they put the label type 'C' on non a non b. They told me back in 1980 that I was a carrier of  the virus, because in the acute sage I had no symptoms and never got jaundice. I felt fine, looked fine. Over the next 37 years or so It was recommend that I get treatment. Interferon injections for 48 months. I said no - who wants to self administer a bad case of the flu for 48 months. Then along came Ribavirin, and that mixed with interferon may do the job. "O" Thanks for a worst case of the flu self administered for god only knows how long, NO THANKS- I"LL PASS ON THIS ONE TOO.  But wait-along comes Pegulated (time release) Interferon, and that mixed in with Ribavirin had a fair cure rate of 40% or so. YEAH-I don't think so!! Three times recommended I start a treatment, 3 times I refuse.  And by the way-my old GP told me I had a fatty liver and that would explain the hi LFT numbers. Back then they diden't know much about HCV let alone how to treat it.Fatty liver my ass! It was HCV cirrhosis bridging the gaps in my liver.

At the age of 56-  I decided it was time to get treated. The local hep Dr. Only had peg-riba. But he told me there was this new drug coming down the pipeline, and that i should look into  clinical trials- Long story short I ended up on one In Seattle WA. This new drug was called SOFOSBUVIR and that mixed in with RIBAVIRIN. was going to do the trick. I did 16 weeks,did not go UND until week 8 or 9.  Relapsed after trial was over. About 15 months or so later they offered me a re-treatment clinical trial that was 12 weeks SOF/RIBA/PEG. I took the offer and completed the 12 weeks . After end of treatment I relapsed. That old cirrhotic liver just had too many hiding places. About a year or so later I was offered a third trial. SOF/VEL/VOX   Or.   SOF/VEL.   It was the Polaris trials.  I passed the screening part, and they just wanted a MRI to take a look at a  couple spots they had been watching. Well the spots had grown,and they diagnosed HCC, later a tumor biopsy would congirm HCC-CC two lovely types of HCC.   I HAD LIVER CANCER.   They had to boot me off the trial because of the HCC. I was told my only hope was a liver transplant and that they would treat the tumors as they popped up, and thats what they did. Removed my gallbladder and 3 or 4 ablation's later they put me on the transplant list. About 8 months later here I am- with a happy shiny new liver.  My transplant team at Swedish Hospital did everything in there power to get me on that list, keep me on the list and to get me to a liver transplant. Got the call on Sunday august 13th at 2:00 in the afternoon that they had a liver coming and that i needed to get to the hospital NOW.  We made the trip (225) miles and checked in at 10:00 pm and was in surgery at 1:00 pm  the next day 8-14-17.  Im recovering well they tell me. Im feeling better each day. Seeing that I dont have HCC CANCER any more I'm gunna stop posting on this HCC treatment Train.   I'm switching tracks over to the VOSEVI treatment Train.

RC has left the station!!

Sorry for your loss....pets are a big part of our lives. How wonderful that Kona had a long happy life.

boxers

RC and Chris-so sorry to hear about your loss of Kona.  I know how hard is it to lose one of our furry friends.  We've lost too many over the years.  As Wendy said, you now have another guardian angel to watch over you.  RIP Kona

I'm sorry for your loss of Kona. It's so unfair that our beloved fur babies have such short lifespans. You and Chris had 13.5 years of love with that kitty, and the grief is as impactful as with anyone you've loved for over a decade. 

You guys are in such a whirlwind, please dont overdo it and please keep hugging each other.

xox

Alison

I'm sorry about Kona, RC. Share my sorrow with Chris, please. We lost two of our feline fur babies this past year, one was 16, the other 14. So hard to say goodbye. I have one left, she's a 9 year old Tuxedo. Wants nothing to do with anyone but me! I'm the guy with the bag of treats! My wife wants another she can call her own, so sometime soon. 

Hope things have smoothed out a little for you today! How is the apartment redecorating coming along? Don't overdo it, pal! If I have to come up there, you're going to hear it from me and a few others I'll be bringing along! Then we're taking the car keys for the Lexus, lol! 

What's today's update? Say hi to Chris for me and relax my friend... Steady as possible, ok?

Lindsay,

Ragdoll is RC's wife, Chris.  She's also a longtime member of the forum and Ragdoll is her screen name. She is also a successful Hep C Warrior! She is a wonderful friend.

Here is her profile page, you'll see where she came by the nickname 

Ragdoll

Boxer. Check your P.M.  

I'm with you boxer!!!!!!! (and RC, and Vosevi magic stardust)! ... KILL, KILL, KIIIIILLLL! Time to insert Wendy's clip here i think. Sorry RC had to be done! ; )  C.

https://www.youtube.com/watch?v=HaWtWAvUb-4

Hope tomorrow is a good or better day (either would do). Hope you are sleeping OK.

Ask your Doctor about adding something like Boost. Really helped me post Zipper.

Hey RC,

How has your temperature been? Any elevation in that since surgery? It's very common for your viral load to spike post transplant, at least that's the information I've gathered. Those little viral suckers go right after the new liver, and anytime there's active replication, those numbers are going to elevate significantly. We always see that with HCV in general. Seems one month our own immune systems can control it better than others and then one day, boom, the viral load spikes with a vengeance. During those spikes, the enzymes are going to elevate accordingly.

I'm going to be very interested to see what your blood work shows after a week of Vosevi. I'm sure your doctors are too. I think there's going to be some serious evidence of Dragon slaying going on there. You're going to be published dude! I want a signed copy of that article, lol! 

Take it easy as you can my friend. I know you and that's what concerns me. You never take it easy.... 

Good morning all. Yesterday was clinic day and my LFT's are all up? What's up with that? They shot up to400 just a few days after transplant . Then they started to settle down and have been staying 150ish. The doctor said if they dont start dropping by monday,that they will need to do a biopsy to see what's going on.I go in Sunday for a blood draw and we will see how the LFT'sare doing.I will have 5 days of vosevi in me,that should help. I'm walking every day and am up to one city block 3x a day.My legs get really heavy towards the end of the walk.They increased the water pill from 60 to 160 , that will get the water off me.My legs and ankles and feet really plumped up. My abdomen is distended 25%.  I should feel better when the water comes off. I asked the doctor about the one hundred million VL and he said that wasn't uncommon . Im going to take it a little easeyer today.   RC

Yay RC 

So glad you're starting your treatment, gotta protect that lovely new liver.

heeheeRC,  ..."better already", haha.   BUT, I agree!, just a little dab 'll do ya!

Let the apocolypse begin.

Its done.I got the first one down the hatch!!   Feeling better already!  RC

RC!

WHAT a beauuuuuu-ti-ful picture!

What a relief to see that bottle in front of you.

Of all the pills you have to take, this one I like.

OMG, 100 mil?, 25 mil (I think) was the highest one I had heard of prior - another "first" for the record books?

So, please do share (if you will) - being that you were looking them up - just what some of your prior labs were leading up to transplant, just so we have some background/baseline reference, and wondering what your LFT's were when they spiked after transplant. What were your ALT's/VL's running at, prior to TP, and then after?

3 PM eh? Tea-time, middle of the road, in between other meds I bet?

I hope you feel a little recovered from your weekend (and all), and SO ready to rumble, I hope your abd is getting less painful now? You are going to KILL this thing - I can't wait til you get that first pill down your gullet. This is going to be some crash!  I am SO happy this is finally happening for you! Hooray, hooray, hooray!!!!!!!!!! Tuesday is a very good day!  C.

Wonderful news RC!  Vosevi to the rescue!

If your friend with the trial information doesn't care, we can list the information here on the forum, Clinical Trials section. We've done that many times in the past. 

Good luck today, RC! Let us know when you drop the first Vosevi bomb. Let the slaying begin! 

Thanks C.  Thanks everyone.  I have clinic today.It should go good.  

I have kept in touch with my clinical trial director, and was told that A major drug Co. was about to kick off a trial on HCV . Most drug co.have moved on but I beleave this drug co. Wants a triple DAA so it can compete with the other Company's. Screening starts soon, and I was asked to send people her way. The trial is in Seattle Wa.  If your interested P.M. Me and I will get you in contact with her.  The trial may be available in other states, I dont know?

My wish for you is that you have an opportunity to Slay the Dragon, and live a healthy happy life forever after!   RC

Lately I would say, no news is good news! You don't need any surprise phone calls. I must say though, I'm glad they are right on top of everything. You have been blessed with an outstanding group of people, and all have been looking out for your well being and doing their best to assure success. My respect and admiration goes out to all of them, including you, Chris and the donor that made this possible. I think they knew they were dealing with an individual that doesn't take no for an answer! If I ever get up there, we're going out and find an artist to come up with a suitable tattoo!

We're all looking forward to the next round of HCV treatment or should I say, the last round of HCV treatment! What a day tomorrow will be. I'm going to be sitting (no standing) right here in the front row. If I can find some pom poms, I'll be jumping for joy with them, too! Good luck Brother, it's going to be great... 

May get you into the Guinness Book of Records!  Thanks for paving the road for so many in the future!

You will go down in the record books!

Hi all, just got a call from my Hepatology Doctor. He is hooked up with the transplant center but is not the doctor or surgeon who did my transplant.   He reconfirmed my drugs (VOSEVI)will be here Tuesday.  However----- VOSEVI has never been used post transplant to treat HCV. They did not run clinical trials on its use post transplan. We are going forward with treatment with very close monitoring. Blood draws twice a week just to see the affect VOSEVI has on me, my transplant and what ever else they want to look at. It seems GILEAD is very interested in my progress.  So like I said before- I'm calling my treatment POLARIS 5

Vosevi is so new that no one has been treated post L/T.    I will be the first!!    RC

This is great news! Today is a GREAT DAY! That spoken from a Texas sized Hurricane. LOL

Enjoy your family this weekend RC and congrats on the good news. Thrilled for you and Chris.