Thanks Huey  My stick is always on the ice because I am a Habs Fan lol..

Hi,, a lot of 1a's in the USA ,, we all like to hear those SVRiffic storys but the 1a's have been lacing in encouraging news as of late,,, your relay needed here. 

We are all in this together Keep your stick on the Ice, (Red Green Show) 

Thanks Malcolm    I trust you are doing well and really appreciate all of your help over this journey. I will always check in to say hello and offer some emotional support to those that are feeling a little down because we both know how that felt.. You take care !

Hi Terry,

Thanks for checking in. The SVR stories keep this Forum ticking over, so go out and enjoy life. Cheers mate.

 Well I just had my second to last test and at 40 weeks I am still SVR so that makes me feel good and one more test in two months and I was told that it would be up to my doctor to keep testing for cancer from there.

 My energy level has come back and the only thing that I developed from the treatment was I am told I have irritable bowel syndrome so I am hopeful that will go away with time.

  I still come on the site to check on everyone but Tig56 is doing such a great job there is no need for me to have any input. It sounds like a lot of people are doing very well on the treatments so that is a great sign for all concerned.

  I love reading some of the success stories because I am very aware how long a lot of us waited and how hard we worked to get through treatment. And again I would like to thank all of you that showed such great support over what seemed like a very long journey.

Not to worry I smacked myself in the head after my fibroscan for thinking that I could have the beers.. The drinking is done unless I make a miraculous change and I show no signs of cirrhosis at all and we know that's not happening...lol  I have started to read up on cures for cirrhosis because that is what got me on the Abbvie trial. I have been reading claims that it can be reversed and when I started hunting for my Hep C cure the doctor told me 30-40 per cent success rate and now look at how far it has come so worth looking into.  I am really happy that more and more are getting cured. Take care all !! 

Focus on you, your example is what will help him, he is just in his last drinking days, the drinking is teaching him but he cannot say this out loud but I believe he hears that voice every second of his life, I drank heavily till treatment with i terferon and riba in 2004 then never again, I do not miss it one bit either. Today on olysio and solvaldi and cycling 35 mile treks! Life suddenly changes for many. Wishing you the very best!

Hi Terry:

I'm sorry if my reply was abrupt.  My brother (who also has hepc) drinks beer and it breaks my heart knowing that, even though it is just a few beers, he may really be harming himself.  Sometimes I just want to smack him in the head!  I understand that we all have our own decisions to make and are doing the best we can. 

Your 24 week SVR is wonderful news and I wish you all the best.  :)

 I want to thank you all for the help throughout the long journey and I know you are right about the few beers. I had limited myself to 2-3 per week but this could be why my results are not progressing so I guess I will find something else to drink.

 I still don't have the energy back that I once had but now that I have come back from a bit of vacation I will start jogging again and see if the increased exercise helps. Still golfing and that helps with getting out for some fresh air and rid ones self of the frustrations. Ha Ha  And thx Jill for merging that for me as you know I am not a computer wiz by any means. I have been following the site a lot just not posting and it seems a lot of people are having good results so that makes me very happy.

 Times are good with the new drugs on the rise but we need FDA approval so the competition will drive the prises down. Take care all !

Congrats Terry!

I bet it feels incredible to have second chance. Stay healthy friend.

Hi Terry, great to hear such good news, congrats on your SVR 24! 

Give your liver chance to heal and it`s quite likely that in time you`ll see a much improved fibroscan result.  It takes years for Hep C to cause damage to our livers and once the virus has been defeated it takes some time for our livers to recover.

Take care and look after yourself, the hard work it done!!

By the way, my drink of choice nowadays is tonic water with ice and a slice... and that`s how I plan to continue! 

(PS- I`ve merged your last 2 threads together so we can see the details of the Abbvie trial you did, to save people having to refer back.)

yayyyyyyyyyyyyyyyyyyyyyyyyy

Hey Terry 

Welcome back its good to hear for you and more important the SVR 24 news.

The fibroscan will come just give it time and good health with your help.

I know having a beer is temping but I have found that the non-alcohol one are not that bad if you get a beer make it a non-alcoholic Coors or one of the others there are many to choose from. Hope all goes well in your future.

matt    

Hi Terry,

Congrats on the SVR 24. As Tig mentioned, my Fibroscan score improved dramatically, but I had to pester my doc to do one, and he waited for just over a year after EOT. He said it would take 2-3 years for further regression.

Mate, a few beers and cirrhosis don't mix. A liver 'flush' is a waste of money IMHO. Cheers.

Congratulations Terry on the SVR 24.  I'm really having a hard time getting out of the CFS (chronic fatigue syndrome) but only 2 weeks post EOT.   I haven't had any alcohol for 6 months.  When taking the high dollar Sovaldi and Olysio each morning I would consider how fortunate I was.  Thinking about having some wine on our vacation NOT   

Hey Terry,

Good to hear from you! I have to agree that any improvement in your fibrosis will likely take a year or more and there aren't any promises with that either. Our member Malcolm has seen some improvements but I remember him mentioning it was over a year since his EOT that any progress in that area occurred. There's quite a bit of information on the web, but I think the best chances for success will depend on time post treatment. The liver is an incredibly resilient organ and will in time recover some of it's lost elasticity and vigor, but time will be the most important factor. 

The thought of having a few beers might seem enticing at times, but I've decided that like HCV, it's part of my past and I don't want to do anything that might give it the foothold it needs to return. The chance of relapse at our stage of recovery is less than 1%, and even though the chance of relapse is low, it's still possible.  The single worst things we can do to a liver infected with or damaged by the HCV virus is to feed it alcohol in any quantity. Whatever we can do to keep the possibility low, is worth the effort IMO. I know there are two schools of thought on this, and you're well aware of them. I'm sure you've given them both plenty of consideration. If I should relapse for any reason, be it a wily old virus hiding under a rock somewhere or due to an immune system failure, I'll know that it wasn't because I did something as easy as giving up drinking. 

Thanks for checking in and letting us know how you're doing. Fibrosis will likely take a long time to turn around and in the meantime, just do what you can to keep things moving in the right direction! Good luck Terry....

Tig

Terry wrote:

---

 Well I have not posted for some time as I waited for the results from my 24 week tests. I just gave blood for my second to last test and received the 24 week ones and everything seemed really good.

  BUT the part that had me concerned was the fact that I also had a Fibro Scan done and my results from that were not any better then when I started treatment. I have had a couple of beers a week with the boys but even my guy told me it should not have any effect on the reading. So not feeling to good about that because I had quit drinking for over a year and was exercising regular so I was hoping that it would drop a bit.

 I am looking at doing a liver flush so hoping for some tips on how I should do that.

---

Forget the flush.  Lose the beers.  Seriously.   

Fibroscan improvements can take time and the results vary.  Some people see significant liver improvement post SVR and others do not.   

 Congrats on SVR and I wish you the best.  :)

 Well I have not posted for some time as I waited for the results from my 24 week tests. I just gave blood for my second to last test and received the 24 week ones and everything seemed really good.

  BUT the part that had me concerned was the fact that I also had a Fibro Scan done and my results from that were not any better then when I started treatment. I have had a couple of beers a week with the boys but even my guy told me it should not have any effect on the reading. So not feeling to good about that because I had quit drinking for over a year and was exercising regular so I was hoping that it would drop a bit.

 I am looking at doing a liver flush so hoping for some tips on how I should do that.

Thanks Malcolm    My Hep guy thinks I am over sensitive about the readings but I just want to get back to normal readings again and gain all my energy back. But what I really want to know is why I am always either standing in the rain or the cold and every picture I see of you is with a beautiful lady in the sun ? LOL I think I need a change of scenery...

Hi Terry,

I wouldn't worry too much about your neutrophil count. Actually, the lymphocytes are the ones that reflect autoimmune capacity.

Also, being cirrhotic, your platelet levels are OK. Anything over 100 is par for the course. They will gradually edge up towards 150. Enjoy life. Cheers.

Well I just did my 24 week blood test so once again I have my fingers crossed. Something that has created a problem is my neutrophil count and WBC are both low so because at this time of year there are a lot of people sick I have now started to avoid going out and while getting my 24 wk ultrasound I left the waiting room because of three or four patients that were coughing all over the place and I have become really nervous about catching anything. I might be over cautious but had to take a week off work because all of the offices I have been in have people hacking so not taking the chance. Bad time of year for colds so any ideas would be appreciated.

terry,

sorry to learn that your immune system isn't doing so well.

i'm 3 months eot & have jumped w/ my white blood cells & neutrophils.

perhaps you should speak to your dr. i believe there's a rescue drug for this.

i know for a fact that Tig was on it.

actually, read my new post for i fought off strep & all other bacterium while on vaca in manhattan!!!!!!

wishing you all the best life has to offer. at least we're 3mo. UND!!!!!!

sandy,ucbgal

I was wondering after treatment how long most of you took to get your immune system back. Three months after treatment my neutrophil count is still 1.3 my platelets are 109 and my WBC is down. I feel fine but my energy is not yet back to normal and occasionally I get some small lines on my fingernails explained to me as the low immune system.

Great news, Terry, congrats on your SRV12!!  It must have been frustrating for you having to wait since Dec 23rd but you`ve responded very well all the way through so this result is no real surprise.  A big relief for you to get that call though I`m sure! 

Your platelets are still quite low but as Matt said I wouldn`t worry too much about them, your body is still recovering from treatment and they should start getting back to normal soon.

Thanks for sharing your journey through this trial with us, we appreciate it.

Wishing you all the best! 

Hey Terry

Well done Terry, congrats on achieving SVR12, I would not sweat the Platelets they can vary based on how hydrated you body is, also your spleen can enlarge and decrease the count as well. Enjoy the change and away you go, thanks for keeping us up to date.

matt 

Well I have not posted much in quite some time because I had my 12 week EOT blood samples given on Dec 23rd but my next appointment is not until March 21st so I have tried to get results and there was no answer..lol    But I received a call today because they want to do an ultrasound and I found out my 12 week test was in fact still UND so that sure took the sweat off my forehead. My ALT and AST have been normal but my Platelets dropped again to 109 so that concerned me a bit but the UND after 12 weeks sure was a great thing to hear about. I also had been mentioning the constipation problem and after seeing my doctor a short while ago he suggested a product called Normatrol . It seems I have IBS or Irritable bowel syndrome and this product works very good. I have been reading lots of good results from everyone so it seems we are all on our way to a better lifestyle and that is sure great to hear. I wish you all the best and keep fighting !

I must have been lucky. I had no digestive problems during or after treatment with Abbvies Turquoise  study

My clinical coordinator suggested that when I took my meds  to prevent stomach issues to take them with toast & peanut butter, which I did religiously.

Anyone else get that tip?

-- Edited by balagan51 on Friday 17th of January 2014 02:11:22 PM

Hi Terry,

Just finished 18 week Merck trial two days ago.   I had a lot of stomach issues the last few weeks--mostly very bad gas pain.  Couldn't take antacids of any kind with the trial.  Seems some people just have gastric issues with the meds.  No pain yesterday and just a little today.  So it must have been the meds.  Wish I could offer suggestions, but I finally just decided "grin and bear it"  was all I could do.  And I took my meds with food as required. They did a gall bladder scan, but it was normal.  

Congratulations on 8 week UND.  I don't have my EOT labs back, but I've had the same numbers as you during the trial and was UND at week16.  My trial coordinator is very optimistic that I am and will be fine.   

Hang in there!  At least it is not interferon.

SuziQ 

Hi Terry,

Congrats on your 8 week Undet. Don't worry about the platelets. 120k is fine at this stage. They will climb after SVR. Cheers.

Terry,

I also did the turquoise trial. I just received my 6 month laB & still UND , all liver enzymes normal and for the first time in I don't know how long,my platelet count is 226.WNL!!!!!!!!

it too was all over the place. Before tx they were hovering around 100/110 .

On nov 4 I had a hip replacement, lost 700ccs of blood and my platelets dropped to 86!!!!!

But in a week bounced right back , which an only mean my system is back to working

My History:

I was a G1B 2005 IFN/Ribo non responder. My viral load actually tripled after 3 months!!!!

On Jan 11, 2013 I started the trial, went UND 4 weeks in. The first 2 weeks were <25

I was in treatment for 24 weeks

best of luck to you, eat some psyllium husks and increase you water intake. :)

UND at 8 weeks is a really good indicator that you may have HepC in the rear view IMHO

Mike

Hey Terry 

Congrats on your week 8 EOT results, that is a very important week and your odds only get  better and better every week. As far as platelets they can easily vary up and down, so I would not be concerned. The stomach thing could be just your body getting used to not being  on the Abbvie Tx and other possible gastric issues.

Keep the faith, your going to make it.

matt 

Hi Terry, great news about your 8 week result, congratulations!  Your platelets are a bit on the low side but I don`t think you need to be too concerned at that level.  I expect they`ll go back to normal again after your treatment has finished.  The main thing is that you`re still UND! 

You`re doing the best thing seeing your GP about the discomfort in your stomach, that must be quite unpleasant for you.  I think it`s natural to be a bit anxious, especially while on tx when we`re so aware of what`s going on in our bodies.  You`re doing very well though so try not to get too stressed.

Keep in touch, and thanks for sharing your good news! 

Hey Terry,

Congrats on the continued UND!! Keep charging buddy, you're doing great and as usual your attitude is pretty darn good. I like to see that positive outlook, especially when you have reason to be down. Don't let that happen, it just ruins a perfectly good day, lol!

As for your platelets dropping, that's going to happen. At 120 you're still looking pretty good in my opinion. Mine dropped down to into the 90's and we've got others here that dropped down below 50. You don't want to cut yourself or have a nose bleed, you'll have a hard time stopping the bleeding! If it gets too low they might add some medication to your already full cabinet or transfuse you. But I don't think at 120 you've got anything to worry about. Do a search here on "Low Platelets" and you'll get a few threads that have been started to discuss this. Mallani has some good information on the subject.

Have you had any problems with constipation? Until I got that under control I had those same stomach cramp and gas problems. Hydration, Metamucil and prunes work well. When I had no other choice I resorted to Milk of Magnesia, which calmly got things moving. The fact that you're used to more activity than you're getting could have a lot to do with it. I've been walking and using a recumbent exercise bike here at home to get some exercise. I've also got a set of stairs that I walk up and down a few times each day. It's not much but it helps and keeps me believing that I'm doing my best under the circumstances. I used to live in Washington State, moved to Florida years ago. I know what your weather is this time of the year, ughh! Pretty gray and foggy most days. You might take a short break and come down to Florida. It's 81 degrees and blue skies today. Lot's of tourists taking in the good weather. Might as well be you!! Hang in there Terry, your day's coming!!

Tig

Well I hope everyone had a great Christmas !   I was in to this time give 10 vials of blood and my 8 week test came back as UND so that was great news. But the part that had me worried was my platelet count went from 149 the last time to 120 this time and he is not sure why this happened but told me a lot of factors could have skewed the readings . But over the last while I have had gas and my stomach has had small pains and feels uncomfortable so I am going to go see my own GP and see if he might have any answers for this . It might be the stress for all I know.  My next visit is now 3 months away so I am hoping that it of course comes back negative as well. Funny how just one small ache and I start to diagnose the worst and I guess that comes from being panicked for so many years . My running has been curtailed because we are in to rainy season in Vancouver so no need to get a cold..lol   

Your results have been improving all along and your positive outlook has had a lot to do with that I'm convinced! You just made your way over a rough road and now are on a smooth road to success. Enjoy your accomplishments and let the future be your guide. Right now I think it looks pretty bright!! Good luck my friend! As for Christmas, I like to think that we've already been given a gift  Anything else will be like a cherry on top!! Merry Christmas buddy!

Terry, sounds good. Best of luck to you, and hoping for a good Christmas for you

Hi Terry, congrats on the 4 wks post tx UND, and all best of luck for your 8 wk result!  You`ve responded to this drug combo very well all the way through and were UND by the second week, so I don`t think you need to be too worried! 

It`s still early days after 24 weeks of tx so try not to be too impatient, give yourself a few more weeks and you`ll soon be feeling much more energetic.  I know it`s frustrating but waiting is part of the game, unfortunately! 

Fingers crossed for a great Christmas, keep us posted! 

Thx Matt and Malcolm     

   I am starting to feel a bit more energy at times but I never though it would take this long. I will give my 12 week sample and receive my 8 week results on Dec 23 so I am hoping for a nice Christmas present.  lol 

  And Malcolm I was told after an ultrasound that I had a bit of a fatty liver and I did discuss the next Fibro Scan and he told me they like to take it about six months after treatment so your information is right on the money.

  At times I was worried because I was still tired and started to get itchy on my chest and back like I had from the riba but I also think that I let my mind work me over as well so just need to relax because I can't do anything about it now. Just need to wait and see what happens. You guys take care !

Hey Terry 

Congrats on your week 4 EOT result,  your odds of SVR only get better from hear out.

You should be getting back your energy level soon, you will make it Terry you are on your way.

matt

Hi Terry,

Good to hear from you. Good luck with your 8 and 12 week VL tests, but I don't think you have much to worry about.

Up to 20% of cirrhotics can have a normal ALT.  As you say, a range of 2-3 times normal upper limit is more usual.  In cirrhotics there is a lot going on in the liver, with regeneration, remodelling and hepatocyte damage when nodules outgrow their blood supply.  In itself, this is enough to raise the enzymes, even in the absence of HCV activity.  The fact that your ALT is normal indicates a fairly quiet liver, which is great.

Your Fibroscan reading of 33 kPa is just a bit more than mine was. It measures liver stiffness, which equates to fibrosis, but the reading can be higher when there is fatty infiltration. I obviously had quite a lot, as I have seen from my recent MRI.  Using the new fat-suppression sequence, it is now possible to quantify the amount of fat.  Mine has decreased markedly, so I expect my next Fibroscan reading to be a lot lower.  It'll probably still be >17. You may be the same. Wait 6 months after your SVR and get the Fibroscan repeated. I'm willing to bet the reading will be a lot lower. Cheers.

 Went in to give my 8 week blood samples and this time it was 7 vials. I have had 12 down to 7 and was 8 last week so who knows ?  lol   

 But after my first four weeks I am still undetected so that is a start and I am of course hopeful that I can make that 12 week standard that they seem to be aiming for. They tell me they have yet to have a relapse so naturally I have my fingers and toes crossed.

 The part that has then baffled is that I had the highest fibro scan reading  yet my ALT is 36 and the other cirrhotic people seem to run in a range from 70 to above 100 so any of you heard about this ?

I haven't posted for a while because like most sports people we have these superstitions . Like not talking to a goalie in the final period if no one has scored or not telling a golfer on the 18th hole that a par will give him a course record. lol  It's all about superstition and I didn't want to jinx myself..lol

 I hope everyone is doing well.  I have been reading some exciting news on the drugs over the last while so we are so close to the end of this ball and chain we have carried around. 2014 is going to be a great year for all of us ! Take care all !