A new oral supportive treatment for patients with HCC.
INDICATIONS
STIVARGA is indicated for the treatment of patients with metastatic colorectal cancer (CRC) who have been previously treated with fluoropyrimidine-, oxaliplatin- and irinotecan-based chemotherapy, an anti-VEGF therapy, and, if RAS wild-type, an anti-EGFR therapy.
STIVARGA is indicated for the treatment of patients with locally advanced, unresectable or metastatic gastrointestinal stromal tumor (GIST) who have been previously treated with imatinib mesylate and sunitinib malate.
STIVARGA is indicated for the treatment of patients with hepatocellular carcinoma (HCC) who have been previously treated with sorafenib
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!!
wmlj1960 said
Sep 1, 2017
Beautiful cats RC. I'm sorry about Kona. I feel for Chris and you and Rocky. They really do become like true family. My little companion is the only thing that keeps me sane some days. I hope your LT recovery is purring along. Take care of yourself!
Sorry for your loss....pets are a big part of our lives. How wonderful that Kona had a long happy life.
boxers
robertsamx said
Sep 1, 2017
Thanks Eveyone. I just wish we could have been there. Kona has a brother named ROCKY, he is a Ragdoll seal point.He is 3 months younger than KONA.They are the best of friends.Both cats came from the same breeder.Rocky is very affectionate- he is glued to Chris. Rocky is 13 years old. I may get KONA #3 the first of the year!! KONA IS ON TOP OF COUCH AND THATS ROCKY BELOW HIM ON COUCH. KONA PIC RC
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
wendyo said
Sep 1, 2017
Very sorry to hear about the loss of Kona. I like to think he is watching over you and Chris. Just another guardian angel for you. Hoping you get some rest this weekend.
Observer said
Sep 1, 2017
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
Canuck said
Sep 1, 2017
Aw. Poor you and Chris and Kona. So sorry you lost him. Understand the broken heart. Lost ours after 18 years and they do break your hearts when they leave us. So sorry for how this is making you feel. Sometimes I think nothing worthwhile is easy. Minute by minute, hour by hour, and day by day - tomorrow IS a new day - see what it will bring. Hoping you get a bit more sleep tonight. xo C.
Tig said
Aug 31, 2017
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?
robertsamx said
Aug 31, 2017
Chris and I have been nursing one of our cats the last 8 months. He is 13.5 years old, had him all his life. His name is KONA, he is a Ragdoll. He's a seal point minted. He came down with kidney disease early this year. There isn't much we can do for him, other than changing up his food to kidney support food.He has sat in my lap or at my side all through my tuff times. I'm so bonded to this cat. He has been loosing weight and we cant get that turned around. We have done everything we can to make KONA comfortable. He comes down stairs with me to the hot rod shop, he follows me all over the house.He's the best cat i have ever had. On Sunday august 13 I got the call from Swedish, they had a liver waiting for me. We packed up some things and I picked up KONA and kissed him goodbye. Said a prayer asking for him to hold on. On 8-24-17 I got a call from our Vet. KONA Was not doing well, and that it was time to let him go home. Chris and I held each other, cried together, and agreed that KONA needed to go home. The following morning 8-25-17 I called our vet and said goodbye
It feels like the Transplant surgeon nicked my heart, it hurts so bad. RIP KONA. RC
Tig said
Aug 31, 2017
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
RC-Glad you're doing well but sounds as though it's a real challenge to get you to slow down! BTW, I LOVE the "Ragdoll" name and although I don't know its origin, it warms my heart whenever I see it in your posts!
robertsamx said
Aug 31, 2017
Boxer. Check your P.M.
robertsamx said
Aug 31, 2017
Boxer. No the place I'm going to is not on the list. I can put in a good word for you, with L/T timing is everything. Hi C- no I'm not sleeping well, I haven't slept right since I got introduced to Mr. RIBA. That was 3 + years ago. Last nite my pain broke through and kicked my as$. I might sleep 1 to 1.5 hours then im up for about the same time. It will return, one thing at a time. Jimmy,so sorry about your TEXAS. Have you started to grow webbing between your toes?? You all need my flat bottom jet boat right about now, and if i were close by I would help.Tig- We reall have been watching that temp number- I check it often daily. Today its off to labs, then I can take the 9am pills. (13) of them now. That will change often in the first 3 months. The pill count in 24 hours is (24). I'm lookingtogoto target store this morning to start getting thins for the temp apartment. Ragdoll and I want to spruce it up a bit. I'm looking forward to the move over to the apartment . Its a roller coaster- this L/T recovery thing. Its hourly, good and bad blended into the day. Back later. RC
Canuck said
Aug 31, 2017
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.
boxers said
Aug 30, 2017
RC, is the apartment you got on the list they gave you? I am so glad to hear about your experience, you give me hope. The tumor board is going to review me again next week and the plan is inactive list until I complete the second phase. More to this story but I will share when you get better. I hope and pray for quick recovery and that your new meds KILL KILL KILL!!
JimmyK said
Aug 30, 2017
Ask your Doctor about adding something like Boost. Really helped me post Zipper.
robertsamx said
Aug 30, 2017
Hi all- We have been checking my temp 2 to 3 times a day. I have not had a temperature. I'm really interested in my load at 5 days On treatment .I went out this morning and my legs hurt, not to mention my incision (zipper). We went out to look at a 2 bedroom apartment at ground level with parking, we like it . We need to go out and buy a few things to set up the apartment. Its furnished and is only rented out to transplant recipient. But you all know there's no place like home. Ragdoll is dragging her feet,she likes it ok but once we move in we can do a few things to make it feel more like home. I have a good day and the next day i pay for the good day.Somebody needs to put me on house arrest.My taster is out of wack, I Think they stapled my stomach, im full 1/3 the way into the meal, and there are times food makes me sick? They have a Starbucks in the hospital and I got a scone the size of a large strawberry, and I coulden't even eat all of it. I had to force it down so i could do my meds.Then the next day i could eat a horse? At some point i will find my happy place with the meds , but it will be a while. RC
Tig said
Aug 30, 2017
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....
Lindsmatt52 said
Aug 30, 2017
Hi RC-Hopefully that Vosevi will kick the s*** out of those LFT's!! Amazing that you're walking 3x a day-very impressive. Continue to take care of yourself!
robertsamx said
Aug 30, 2017
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
wendyo said
Aug 30, 2017
The V Train has left the station!
Observer said
Aug 30, 2017
Yay RC
So glad you're starting your treatment, gotta protect that lovely new liver.
bbomb said
Aug 29, 2017
yay RC ...you got this Party started!
Canuck said
Aug 29, 2017
heeheeRC, ..."better already", haha. BUT, I agree!, just a little dab 'll do ya!
Let the apocolypse begin.
https://www.youtube.com/watch?v=P73Z6291Pt8
Tig said
Aug 29, 2017
robertsamx said
Aug 29, 2017
Its done.I got the first one down the hatch!! Feeling better already! RC
Tig said
Aug 29, 2017
A lovely photo indeed! I gave it a little twist for you so we didn't have to lay on our side to read the bottle! A very boring brown colored pill though! They could've at least put some sparkles or something in there, lol!
I've got a picture of the Vosevi Train chugging away from the Seattle Station........All Aboard!!
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.
polosilver said
Aug 29, 2017
RC -- we love all this good news!! Keep it up and WTG!
Lindsmatt52 said
Aug 29, 2017
Wonderful news RC! Vosevi to the rescue!
robertsamx said
Aug 29, 2017
Hi all. The VOSEVI has arrived. Just got it. I have decided to take it every day at 3 in the afternoon. The Polaris 5 trial has begun. Lets get ready to rumble!!! RC
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!
robertsamx said
Aug 29, 2017
I just went online to look at some blood test results, and my Quan count is Greater than one hundred million. Man thats out there! The dragon is at work I would say. Today I drop a new bomb on him. VOSEVI to the rescue!! RC
robertsamx said
Aug 29, 2017
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
Canuck said
Aug 29, 2017
In the record books is right! So many "firsts" for you RC! First in line on the transplant list! First in line for a choice of not one but two livers, no less! First class treatment, in first class facilities with your first class medical team! First signs that all will really and truly be well now. First in line for the Polaris 5 trial. First class HCV drugs on the way! First time you are going to kill this HCV forever! A whirlwind of firsts for you RC, these last months and years. I am just so thankful you, and Chris were strong enough, tough enough, brave enough to withstand all that was thrown at you - you are number #1 in our books! I coudn't possibly be more proud of you and pleased for you. You so rightly deserve all the good things.
A good day for a war tomorrow, as the tactics are planned. Your Vosevi day one! (finally). We'll be there. XO C.
Tig said
Aug 28, 2017
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...
robertsamx said
Aug 28, 2017
Nothing new to report, had a blood draw this morning and will have clinic visit tomorrow. The VOSEVI will be here tomorrow . I had family in town yesterday, did a little too much and man am I paying for it today. Tomorrow will be a big day!! RC
Lindsmatt52 said
Aug 27, 2017
May get you into the Guinness Book of Records! Thanks for paving the road for so many in the future!
wmlj1960 said
Aug 27, 2017
RC the 'Pioneer'. Wow, that has a great ring to it. That dragon doesn't stand a chance!
wendyo said
Aug 26, 2017
You will go down in the record books!
Tig said
Aug 26, 2017
I'm confident that this was meant to be and so it shall be.......successful! Sovaldi has been proven time and again, Velpa is good for just about everything known to us when combined with Sovaldi and then we have Voxilaprevir to complete the Triple Crown of HCV treatments. If I had the money and someone would accept my bet, we'd all be rich taking this bet. It's a sure winner!!
robertsamx said
Aug 26, 2017
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
movebo said
Aug 26, 2017
Hi RC,
I am very happy to hear all is going well, and the biopsy came back good!
I had a "wide awake" one, bedside, two years ago: first try no yield, so he tried two more times. I was very wide awake at that point. Still no yield. Hepatologist found it appropriate to remark that "the liver is in pieces" then and there, which did not improve my psychology at all... So they put me in a wheelchair and pushed me to the ultrasound room, where I got (after a three hours wait) some fentanyl, and the fourth needle went in and got the sample ... Since then, however, things have improved considerably ...
This VOSEVI seems to be quite a drug, beating the Harvoni numbers handsomely. So I think, wish and hope you will be fine!
Cheers, Tom
JimmyK said
Aug 26, 2017
This is great news! Today is a GREAT DAY! That spoken from a Texas sized Hurricane. LOL
Lindsmatt52 said
Aug 26, 2017
Such wonderful news RC! I was just telling my husband last night that I was worried about you because we hadn't had an update about the biopsy! SO happy for you and the great news. I've been reading up on Vosevi and it sounds like another miracle drug and I'm sure it will be for you! Enjoy the time with your family and continue to take it easy.
wendyo said
Aug 26, 2017
Enjoy your family this weekend RC and congrats on the good news. Thrilled for you and Chris.
Cinnamon Girl said
Aug 26, 2017
Fantastic new, RC, so good to hear all`s ok with the new liver and you`re home with your loved ones, such a relief for us all.
You`ve come such a long way over the last few years and no pesky Dragon is going to defeat you now!
Rest and recuperate this weekend!
Observer said
Aug 26, 2017
Robert,
I am so relieved your biospy results are good. And it's so, so, so good to hear that that darn dragon is going down starting Tuesday! You really are the ultimate dragon warrior.
Have a lovely weekend with your family and don't over do it, let them all spoil and pamper you. You DO deserve it.
A new oral supportive treatment for patients with HCC.
INDICATIONS
STIVARGA is indicated for the treatment of patients with metastatic colorectal cancer (CRC) who have been previously treated with fluoropyrimidine-, oxaliplatin- and irinotecan-based chemotherapy, an anti-VEGF therapy, and, if RAS wild-type, an anti-EGFR therapy.
STIVARGA is indicated for the treatment of patients with locally advanced, unresectable or metastatic gastrointestinal stromal tumor (GIST) who have been previously treated with imatinib mesylate and sunitinib malate.
STIVARGA is indicated for the treatment of patients with hepatocellular carcinoma (HCC) who have been previously treated with sorafenib
Stivarga - HCC
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!!
Beautiful cats RC. I'm sorry about Kona. I feel for Chris and you and Rocky. They really do become like true family. My little companion is the only thing that keeps me sane some days. I hope your LT recovery is purring along. Take care of yourself!
Sorry for your loss....pets are a big part of our lives. How wonderful that Kona had a long happy life.
boxers
Thanks Eveyone. I just wish we could have been there. Kona has a brother named ROCKY, he is a Ragdoll seal point.He is 3 months younger than KONA.They are the best of friends.Both cats came from the same breeder.Rocky is very affectionate- he is glued to Chris. Rocky is 13 years old. I may get KONA #3 the first of the year!! KONA IS ON TOP OF COUCH AND THATS ROCKY BELOW HIM ON COUCH. KONA PIC RC
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
Very sorry to hear about the loss of Kona. I like to think he is watching over you and Chris. Just another guardian angel for you. Hoping you get some rest this weekend.
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
Aw. Poor you and Chris and Kona. So sorry you lost him. Understand the broken heart. Lost ours after 18 years and they do break your hearts when they leave us. So sorry for how this is making you feel. Sometimes I think nothing worthwhile is easy. Minute by minute, hour by hour, and day by day - tomorrow IS a new day - see what it will bring. Hoping you get a bit more sleep tonight. xo C.
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?
Chris and I have been nursing one of our cats the last 8 months. He is 13.5 years old, had him all his life. His name is KONA, he is a Ragdoll. He's a seal point minted. He came down with kidney disease early this year. There isn't much we can do for him, other than changing up his food to kidney support food.He has sat in my lap or at my side all through my tuff times. I'm so bonded to this cat. He has been loosing weight and we cant get that turned around. We have done everything we can to make KONA comfortable. He comes down stairs with me to the hot rod shop, he follows me all over the house.He's the best cat i have ever had. On Sunday august 13 I got the call from Swedish, they had a liver waiting for me. We packed up some things and I picked up KONA and kissed him goodbye. Said a prayer asking for him to hold on. On 8-24-17 I got a call from our Vet. KONA Was not doing well, and that it was time to let him go home. Chris and I held each other, cried together, and agreed that KONA needed to go home. The following morning 8-25-17 I called our vet and said goodbye
It feels like the Transplant surgeon nicked my heart, it hurts so bad. RIP KONA. RC
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
RC-Glad you're doing well but sounds as though it's a real challenge to get you to slow down! BTW, I LOVE the "Ragdoll" name and although I don't know its origin, it warms my heart whenever I see it in your posts!
Boxer. Check your P.M.
Boxer. No the place I'm going to is not on the list. I can put in a good word for you, with L/T timing is everything. Hi C- no I'm not sleeping well, I haven't slept right since I got introduced to Mr. RIBA. That was 3 + years ago. Last nite my pain broke through and kicked my as$. I might sleep 1 to 1.5 hours then im up for about the same time. It will return, one thing at a time. Jimmy,so sorry about your TEXAS. Have you started to grow webbing between your toes?? You all need my flat bottom jet boat right about now, and if i were close by I would help.Tig- We reall have been watching that temp number- I check it often daily. Today its off to labs, then I can take the 9am pills. (13) of them now. That will change often in the first 3 months. The pill count in 24 hours is (24). I'm lookingtogoto target store this morning to start getting thins for the temp apartment. Ragdoll and I want to spruce it up a bit. I'm looking forward to the move over to the apartment . Its a roller coaster- this L/T recovery thing. Its hourly, good and bad blended into the day. Back later. RC
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.
RC, is the apartment you got on the list they gave you? I am so glad to hear about your experience, you give me hope. The tumor board is going to review me again next week and the plan is inactive list until I complete the second phase. More to this story but I will share when you get better. I hope and pray for quick recovery and that your new meds KILL KILL KILL!!
Ask your Doctor about adding something like Boost. Really helped me post Zipper.
Hi all- We have been checking my temp 2 to 3 times a day. I have not had a temperature. I'm really interested in my load at 5 days On treatment .I went out this morning and my legs hurt, not to mention my incision (zipper). We went out to look at a 2 bedroom apartment at ground level with parking, we like it . We need to go out and buy a few things to set up the apartment. Its furnished and is only rented out to transplant recipient. But you all know there's no place like home. Ragdoll is dragging her feet,she likes it ok but once we move in we can do a few things to make it feel more like home. I have a good day and the next day i pay for the good day.Somebody needs to put me on house arrest.My taster is out of wack, I Think they stapled my stomach, im full 1/3 the way into the meal, and there are times food makes me sick? They have a Starbucks in the hospital and I got a scone the size of a large strawberry, and I coulden't even eat all of it. I had to force it down so i could do my meds.Then the next day i could eat a horse? At some point i will find my happy place with the meds , but it will be a while. RC
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....
Hi RC-Hopefully that Vosevi will kick the s*** out of those LFT's!! Amazing that you're walking 3x a day-very impressive. Continue to take care of yourself!
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
The V Train has left the station!
Yay RC
So glad you're starting your treatment, gotta protect that lovely new liver.
yay RC ...you got this Party started!
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
A lovely photo indeed! I gave it a little twist for you so we didn't have to lay on our side to read the bottle! A very boring brown colored pill though! They could've at least put some sparkles or something in there, lol!
I've got a picture of the Vosevi Train chugging away from the Seattle Station........All Aboard!!
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.
RC -- we love all this good news!! Keep it up and WTG!
Wonderful news RC! Vosevi to the rescue!
Hi all. The VOSEVI has arrived. Just got it. I have decided to take it every day at 3 in the afternoon. The Polaris 5 trial has begun. Lets get ready to rumble!!! RC
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!
I just went online to look at some blood test results, and my Quan count is Greater than one hundred million. Man thats out there! The dragon is at work I would say. Today I drop a new bomb on him. VOSEVI to the rescue!! RC
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
In the record books is right! So many "firsts" for you RC! First in line on the transplant list! First in line for a choice of not one but two livers, no less! First class treatment, in first class facilities with your first class medical team! First signs that all will really and truly be well now. First in line for the Polaris 5 trial. First class HCV drugs on the way! First time you are going to kill this HCV forever! A whirlwind of firsts for you RC, these last months and years. I am just so thankful you, and Chris were strong enough, tough enough, brave enough to withstand all that was thrown at you - you are number #1 in our books! I coudn't possibly be more proud of you and pleased for you. You so rightly deserve all the good things.
A good day for a war tomorrow, as the tactics are planned. Your Vosevi day one! (finally). We'll be there. XO C.
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...
Nothing new to report, had a blood draw this morning and will have clinic visit tomorrow. The VOSEVI will be here tomorrow . I had family in town yesterday, did a little too much and man am I paying for it today. Tomorrow will be a big day!! RC
May get you into the Guinness Book of Records!
Thanks for paving the road for so many in the future!
RC the 'Pioneer'. Wow, that has a great ring to it. That dragon doesn't stand a chance!
You will go down in the record books!
I'm confident that this was meant to be and so it shall be.......successful! Sovaldi has been proven time and again, Velpa is good for just about everything known to us when combined with Sovaldi and then we have Voxilaprevir to complete the Triple Crown of HCV treatments. If I had the money and someone would accept my bet, we'd all be rich taking this bet. It's a sure winner!!
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
I am very happy to hear all is going well, and the biopsy came back good!
I had a "wide awake" one, bedside, two years ago: first try no yield, so he tried two more times. I was very wide awake at that point. Still no yield. Hepatologist found it appropriate to remark that "the liver is in pieces" then and there, which did not improve my psychology at all... So they put me in a wheelchair and pushed me to the ultrasound room, where I got (after a three hours wait) some fentanyl, and the fourth needle went in and got the sample ... Since then, however, things have improved considerably ...
This VOSEVI seems to be quite a drug, beating the Harvoni numbers handsomely. So I think, wish and hope you will be fine!
Cheers, Tom
This is great news! Today is a GREAT DAY! That spoken from a Texas sized Hurricane. LOL
Such wonderful news RC! I was just telling my husband last night that I was worried about you because we hadn't had an update about the biopsy! SO happy for you and the great news. I've been reading up on Vosevi and it sounds like another miracle drug and I'm sure it will be for you! Enjoy the time with your family and continue to take it easy.
Enjoy your family this weekend RC and congrats on the good news. Thrilled for you and Chris.
Fantastic new, RC, so good to hear all`s ok with the new liver and you`re home with your loved ones, such a relief for us all.
You`ve come such a long way over the last few years and no pesky Dragon is going to defeat you now!
Rest and recuperate this weekend!
Robert,
I am so relieved your biospy results are good. And it's so, so, so good to hear that that darn dragon is going down starting Tuesday! You really are the ultimate dragon warrior.
Have a lovely weekend with your family and don't over do it, let them all spoil and pamper you. You DO deserve it.
bless
Alison