Thanks Cinnamon Girl and mindovermatter!

I'm less scared, more anxious to start tx now days.

I just got my lab orders in the mail from my doc. I'm supposed to get them in about a month. (They want my blood labs about 2-3 weeks before I go in for my consult in early May.)

Now that I realize what my liver stage actually means, I would start treatment tomorrow if I could!

Waiting is always the hardest part, with anything for that matter.

After the consultatation, and if my doc recommends treatment, I wonder how long I will have to wait to get the drugs etc., and begin treatment. Is it different for everybody?

MusicMan wrote:

---

So everything I have read so far seems to indicate that the success rate of the Sovaldi/Peg/Riba route with 1a people (like me) is around 90%. Did I read that correctly?

I can't seem to find any information that agrees on the success rate of the Sovaldi/Olysio/Riba combo.  

I would love to hear from people on both combos. 

Thank you!

 

---

 Hi again MusicMan,

I can give you some information about success rates.  According to the published data from the Sovaldi clinical trials, the overall success rate for genotype 1 tx naive with Sovaldi + pag.riba for 12 weeks was 90%, but for genotype 1a it was a bit higher at 92%. You can find that information in the full prescribing details, scroll down to 14.2, Table 8, the Neutrino trial...

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf

As far as the Sovaldi/Olysio combo is concerned we don`t have full details yet of the success rates as this is an off-label treatment which is based on the Comos trials which only went to Phase 11 and not Phase 111. The information we do have though indicates SVR4 success rates of 96 to 100% in treatment-naive patients with stage F3 fibrosis or F4 cirrhosis.

Here`s a link to the Cosmos trial results, you can read about it here...

http://www.aidsmap.com/Simeprevir-sofosbuvir-produces-high-sustained-response-rates-for-hard-to-treat-patients-in-COSMOS-trial/page/2787623/

Hope that helps.  Try not to be scared, once you get going with your treatment the anxiety will lift and you`ll be so pleased to be on your journey to a healthy life.  We`ve all been there, and as Mindovermatter said, your young age is on your side! 

Hi MusicMan,

I am about the same age as you. I started treatment a couple of months ago.

I, too, was scared. Just as you are.

It's normal to be scared, you know.

It is good that you have told your boss and he is supportive. On treatment there might be days when you do not feel good and consequently want to leave office early or take an off.

BUT, the treatment is very manageable. Do not pay too much attention to stories of  horrible side effects of Hepatitis C treatment.

Yes, many people had bad side effects. But most of them are older: people in their 50s or 60s.

You are 32, you are young. You are very likely not to have very bad side-effects, although that is not a given.

I am in my third month of treatment. There are some days when I do not feel that I am undergoing treatment at all. Some days are harder.

In 73 days of treatment so far, there have been around 7 days when I felt like trash.

The other 67 were very manageable.

You know what, I was a lot more anxious before starting treatment than I am now.

And I think that might happen to you to.

Hepatitis C treatment is not as horrible as we are led to believe. No, it is not. 

32 is a great age to start treatment. I started at 30.

Go for it, man.

The people on this forum are very knowledgeable and very supportive.

You can always rely on them. They will have answers to most of your questions. You are at the right place, man. And at the right time.

The landscape for Hepatitis C treatment has never been this good.

Thanks everyone! 

I'm nervous but excited to begin treatment. I won't know what that will look like until early may. 

I have only told my direct boss, and two of my closest coworkers. I felt that was best in case I go the Sovaldi/Peg/Riba route. They are super supportive, and that's all I can ask for. My wife is supportive too. Some people in my family know, but not all extended family. 

So everything I have read so far seems to indicate that the success rate of the Sovaldi/Peg/Riba route with 1a people (like me) is around 90%. Did I read that correctly?

I can't seem to find any information that agrees on the success rate of the Sovaldi/Olysio/Riba combo.  

I would love to hear from people on both combos. 

Can I just say that it is so refreshing, and nice, to have this forum to interact with real people living and fighting this disease. It feels alienating at times. 

Thank you!

Hi again, MusicMan, good to hear from you, welcome back!   I remember when you first joined the forum in 2011 and it`s wonderful to hear how your life has changed for the better since then.

Congratulations to you and your wife on the birth of your baby boy, you must both be thrilled!  Great news also about your new house and job too!  I think you`ve done very well giving up the drink, I`m sure it can`t have been easy.  You certainly have many good reasons to keep yourself healthy with a family and a secure future ahead of you.

We already have a growing number of members doing treatment with Sovadli in various combinations and they are doing amazingly well with minimal side effects...you have every reason to be optimistic!

Stay in touch, we`ll be pleased to hear how it goes.  All best wishes,  Jill 

Hi MusicMan,

Welcome back! In 3 years the game has changed a lot in HepC treatment.

As Tig said, your have moderately severe liver fibrosis, and I would want treatment soon. You'll probably need 24 weeks of treatment, and the current options are Sovaldi/ Peg/ Riba or Sovaldi/ Olysio/ Riba. There should be other options coming out later this year.

Glad to hear you've given up the booze. That accelerates fibrosis. Good luck.

Absolutely! We've got members here that have gone on to SVR and within the first year have shown remarkable improvement in their Metavir scores. The liver is a very resilient organ, particularly when it's healthy! We have a member that had a partial live liver transplant and the section actually grew back rather rapidly and he now has a normal sized liver! Incredible stuff! So you've got every reason to be positive!

Tig

Thank you! Now for another question. After tx, can a liver heal? Or is a stage 3 liver just too far gone?

Hi Billy,

Welcome back to the forum! Glad to have you here. Congratulations to you and your wife for your good news! The baby will be a wonderful part of your future together, enjoy the blessing that they bring to your lives. They grow up so quick, so cherish every moment together!

Fibrosis is scored 0 - 4. A score of 3-4 indicates high fibrosis bordering on cirrhosis. If it is actually scored as a 4, then it is considered cirrhosis. But the new triple treatment, Sov/Int/Riba is extremely effective, even with cirrhosis. However, I believe the standard length of treatment for cirrhotic's is 24 weeks. But the old SOCs with Incivek and Victrelis is still 48 weeks for cirrhotic's. It's always improving and the new triples have far less side effects. There are new treatments in trials all the time and your doctor is right, new ones are soon to be released. But with your level of fibrosis, I'd prefer to get started as soon as I could to get that progression halted. Good luck and stay in touch. It's a great time for all of us to finally beat this thing on our terms!

Tig

Fibrosis:  http://hepatitis.about.com/od/diagnosis/a/Metavir.htm

Hi everyone. I am the original poster on this thread. Wow it has been 3 years since that first post. Well a lot has changed. Time to come clean. Ready? Ok, here it goes!

Well, my wife and I tried IVF 3 times to have a baby. I'm happy to say we have a happy baby boy now! He's almost 8 months old now. We also moved to a house this passed summer.

I have a good job now with good insurance. That will come in handy.

Also last summer I had a liver biopsy. It came back with active hep c and stage 3 of 4 fibrosis. If anyone can tell me what that means or share some insight, I would be grateful.

The doc recommended we wait for tx for better drugs to come out. I'm genotype 1a.

Also (useful information), I quit drinking (finally) February of 2013. I think I was in denial for the first 2 years. I might have even drank more to forget. Foolish? You bet! But I'm sure someone out there can relate. 

Ok so that brings us to yesterday. (A full 3 years after my first post in this thread.)

I called my GI doc for a consult. I have an appointment in May. The NP on the phone seemed cheerfully optimistic and told me about new drugs that are out. (I am almost positive she is talking about Sovaldi.) So I will hopefully begin tx this May or possibly June.

I am excited. From what I read everywhere the success rate is highest on genotype 1a people when used in combination with ribovaren and (unfortunately) interferon (yuck!). I am willing though because it appears, again from my research online, that it is a 12 week treatment, and maybe a 24 week treatment at worst. (I'm pulling for 12)

We shall see in May. Regardless I am back, and although lots of things have changed in my life, I am still "Really Scared!".

I hope you all have been well over the last three years. Thanks for reading this. It sure feels better getting this off my chest. 

Oh! And if anyone can share some knowledge about the stage 3 fibrosis, that would be most helpful!

Thanks and be well!

-- Edited by MusicMan on Wednesday 12th of March 2014 02:34:40 AM

Thanks Jill,

I love new places too. I never get tired of going to and seeing new places. I got to see San Francisco last summer and it was great. While I was there I drove out to Yosemite National Park and it was really cool too. Its going to be 98 here again today so I will be trying to stay inside during the afternoon.

Glad to hear your doing well. Ron

Hi Ron, you`re right there, anything that helps you get through this is good news.  I watched a lot of old comedy repeats while I was on tx and tried to avoid as much stressful stuff as possible.  Tx can get tough at times but try to deal with it day at a time and keep on with your energy management, that is so important.

I love to hear about different places in the world.  3 months of the year with sunny 70 degrees would just suit me fine!

Good luck with your 4 wk test, all the best, Jill xxx

Hi PJ, love your new avatar! xx

The weather here is actually great. Enduring the long hot months can be difficult but once that becomes an accepted part of living here we just deal with it. Otherwise it is always a low humidity environment. We have very few overcast days so there is very little gloom type feeling here. Rain days are usually scattered out during late summer. We get a taste of rain and heat (humidity) just a few days a year. lol. It always seems to serve as a reminder of life in Florida. lol. I grew up in Ohio and later my Mom lived in Florida. I spent several month this winter getting my Dad moved out here from Ohio. Talk about inclement weather? Wow, the overcast was continuous. In fact, lol my Dad is like "what the hell" all the time saying "why would ANYONE live in Ohio" lol. lol. He got here on Jan. 15 this year and counted the days looking for a bad one, lol, he gave up counting after 2 months or so. lol. I count my blessings here when we can easily go 3 months at a time with sunny 70 degrees. Anyway, I'm not gloating. I just ended up here in the 70s thanks to one of my Moms excursions and never found a reason to leave.

Thanks for the interest in my test. I'm just going to believe with you that yours will be UND in the first 4 weeks since we wont see your results. This virus has so many unpredictable but the one thing that seems to be constant is that the earlier we hit und the more likely we are to conquer this thing completely so Im pulling for you all the way.     

sx seems to have leveled off a bit in the 3rd week. I was getting some anxiety last week wondering how bad it was going to get. 2nd day after the 3rd injection and I'm thinking "ok, I can do this" I'm learning to use my energy wisely and stay positive. Ive been laughing at dumb stuff on purpose trying not to get weighted down to much with this. lol. Anything that helps right? lol. lol.

Try to make it a great day. Ron

Thanks James and Jill,

I thought the test would be on the last day of the 4th week but better to ask than sit here wondering. I could call the nurse of course but it was a easy question. The dr wanted a hemo test at 1 week but they never scheduled it and I wasn't about to volunteer. lol. The last thing I feel like doing is getting stuck an extra time. There have been no sx that seem worthy of alarm so I will call in and volunteer at the 4 week mark.

Hot is a way of life here about 5-6 month of the year. The high was 93 today and the low is 70. In the desert it can get quite cold at night when the highs are below 90. For the desert rat anything approaching 70 is cod anyway and now the chills and alternating sweats are making it so much more challenging. I say trive under pressure and just get tougher. lol.

Ron

Hi Ron, sorry you`re having some uncomfortable side effects, the first few weeks can be hard going while you`re getting used to the meds.  Well done for getting your 3rd injection done. 

How often are you seeing your doc or hospital team?  Some things are different over here in the UK but I had my 4 wk test a wk after the 4th shot, I seem to remember.

Goodness it`s hot in Phoenix!

Good luck Ron and also PJ, love from Jill xxx

The waiting for results is never fun but I was wondering more about the timing of the test itself. Would it be 1 week after the 4th injection?

Ron.

hi Ron i think it depends where you live but my 4wk blood results took 3 weeks.was a long wait

kaz x

Thanks all,

I'm already getting somewhat used to the added level of discomfort. It not all too bad. Here in Phoenix its already in the 90s and its no fun going out and its only May. Im used to the heat as Ive been here over 30 years but it doesn't make it any more fun.

I actually took the 3rd injection this week which puts me ahead of Pj by about a week (I think) so Im wondering if any of you know how long after the 4 injection I should expect to get my 4 week levels?

Ron

Hi Everybody,

     Ron - Kaz is right, you never exactly know how the sx are going to be until you get there.  After the first four weeks most of my sx would start on Sunday and then last until about Tuesday, although they weren't near as bad as at first.  I would feel a little better each day until I had to do the shot again. 

    Those flu like symptoms went away when I was at about shot seven and if I didn't go crazy and overdo it energywise I could make it through the week without too much trouble.  I took sleeping pills to sleep, because, although I was very tired, I could not sleep at all without them.  That was my main sx throughout tx until the itching skin near the end.

     Congrats on doing shot two!  Just hang in there and you will get  through this, I know it's hard. 

     PJ - It's interesting how they run your study.   I know that I would require reminders to remember my meds, because when I start focusing on something the rest of the world goes away and I might not come back for hours!  I did spend plenty of hours under the electric blanket.  As a matter of fact I had an inch of snow on the ground when I woke up this morning, Colorado weather is so wonderful...  Hope everyone is as fine as they can be, ty

Hi Ron well done on shot 2 i found the first few shots were the worst.yep tx is all about waiting around and seeing what happens hope your drinking plenty of water

you take it easy

kaz

xxx

Well, I made it through the night,

I went to bed feeling very cold. By the time I get up this am I was sweating like crazy and still am now. I hope everyone is doing ok out there.

It sounds like the new drug may be out there later this month. Right about the time I get my 4 week test. All I can do now is wait and see what happens. Hoping for great test results of course.

Ron.

Hope your still doin well PJ.

Wed. is my injection day so Ive made it a full 2 weeks today. The second week has really sucked. I had myself convinced that it wouldn't be so bad. Ugh. I am 51 years old so much of my youth has been spent and I sure wish now I had done this at a younger age.

I am only posting on this thread for now to conserve some energy. Only one of the studies I contacted replied to say they are closed. I see now getting into a study can be very difficult. Sure hope they get the approvals for everyone to start using the faster drug.

Hope everyone is doing as well as posible. Ron

Thanks for sharing Ty.

I did get cold chills the first couple of nights and they still show up on and off. But for the most part its been the sweats all the time. Its like my body doesn't know what to do and can go back and forth in a matter of minutes.

Im sure glad to hear there is at least a chance this will get easier. lol. I was starting to wonder thinking this is only getting worse so far.

Ron.

Hi Everybody,

     Pj - Maybe they test differently to try to help get rid of some of the placebo effect, but what do I know?  It was very interesting to me that they text you to make sure you are staying on schedule, I wondered how they accounted for the variables when dealing with individual patients.  I'm also glad to hear that your sides are being kind so far, just don't overdo it, like I would when I was feeling better, lol.

     Ron - It's interesting that you are having night sweats from the tx.  One hour after my first shot I got very cold and I stayed that way throughout tx.  I don't know if it was because of winter or what.  I know how bad the early sx can be, I was one who suffered the first four weeks, but it does improve.  I'm not sure if it gets better or we get tougher at handling it, but the tx becomes more "doable" over time.

    Here's to getting that UND in both of you, ty

IM pulling for you to be und on your first test no matter when it is. I had a tough time last night with sweating all night and a terrible head ache. Im hoping that just by chance Im one of those that gets an early response. Im heading into the 3rd injection wed, and I sure hope the sx don't get much worse cuz im not liking this much. Nice to see others here completing the course. thanks everyone.

Ron

Thanks Lesley and PJ,

I will be very glad to get a VL count at 4 weeks. I think I would look for a lab on my own if I had to wait 24 weeks. I'm not that patient of a person and it would be driving me nuts. I will be glad to get my progress even if I'm not und at least I want to know if I'm progressing.

We will be rooting for you PJ and you are much more likely to be und sooner so Im sure it will be worth the wait.

Walking is great, I felt 100 times better this morning after walking.

Thanks for the info Lesley, its nice to not be alone fighting this.

Ron.

Hi Ron,

These figures relates to interferon & ribaviron treatment only:-

To go undetected (EVR)at 4 weeks is (if I recall correctly) an exquisite response (I hope I have the terminology correct) & it means a probable successful outcome to the tx.

To attain EVR at 12 weeks is very good news as the virus is sensitive to the therapy.

Undetected @ 24 wks for genotypes 2&3.( End of treatment.)means that the virus is- just that.......undetected & that you have responded to treatment.

For genotypes 1,4,5,6, this test will take place after 48 wks. (End of treatment)

If after 24 wks post tx,  further blood tests come out negative, you are considered to have a sustained virological response ....S.V.R. which is what we are all hoping & praying for.

Hope this helps 

Lesleyx

Hi PJ, good to see you here.

I just started a week ago wed. myself. Genotype 1 and dint even know about possible trails when I started. If I had done my research a little better I would have found one first. But Im on my way now and have about 2 weeks to go for the all important 4 week test. There has been some confusion for me about how it works for us as I was told by the drug co, that I should expect to be UND at 4 weeks if its going to work but a number of people here are going UND at 24 weeks.

As far as sx the second week has been a little worse but still quite tolerable. I drink water and take occasional IBprofen. Other than that Im staying active and sleeping a lot otherwise. Both seem to help. Feel free to write.

Ron.

Everone is different, there are so many factors that affect progression. I heard of a case where a 80 year old man tested positive and he susspected he was exposed during the war some 60 years ago!

The main thing here is its a chronic infection. Some people shake it on there own, some need  medication. The key is, if on Meds, Take the stuff till the end.

if symptoms are too brutal Take less ribovarin but keep your interferon at the correct dosage. If you ever reduce the interferon during treatment, you open the door for the virus to survive.

You can actually shake it with just interferon. But today, I think the better cheaper way is go for the interferon, Ribovarin, plus teleprever, on the shorter time frame.

Ya can get depressed on these meds, just keep telling yourself its just the meds. You can do it. I shook the virus a decade ago.

Hi Musicman, I waited 20 years to get treatment. I cant say if it was a right or wrong decision. I can only say on the pro side I didnt end up suffering from the virus and hopefully the drugs are more advanced than they were 20 years ago. On the con side I can say that for sure I was much better equipped physically to handle the tx. Also, while the side effects are bad I don't think they are near as bad as I had imagined and had myself in a very fearful state about taking the tx for many many years. If I could make the choice over I would have taken the tx much earlier in life as I'm 51 now and realize it would have been easier them.

Ron.

Hi MusicMan, just wanted to say `hello` and welcome - sorry I haven`t got round to speaking to you before.   Being newly diagnosed comes as a shock to most people so
give yourself time to let all this new info sink in and to come to terms with it.  Good news about your ultrsound results.

I`m with the others on the pregnancy plans - treatment comes first without a doubt I would think.  Talk your options over with your medical team and your wife, and get as much info as you can to help you deal with it

Wishing you all the best, Jill xx