Hi Mike, sorry to hear you`re going through such difficult times and not feeling well, and please do feel welcome to vent here any time you feel the need to, it`s what we`re here for.

My own mother had dementia and so I know how stressful and upsetting that can be for a family, and my heart goes out to you and your wife.  It seems like you`ve had an awful lot to cope with over the last few months and having your sleep disturbed by restless leg syndrome in recent weeks can`t be helping either.

Keep in touch and do let us know when you get your blood test results.  Take it easy, and all the best of luck, hope things start to improve very soon.   

Thanks tig.

won't get a read till middle of next week. I'm not scheduled to go back to the trial center till march 25

didn't want to wait

im just going to lay around , push fluids, and pray this passes.

really, thanks

mike

Hey Mike,

Damn Bro that's not the kind of thing you need to be going through now! What do the doc's have to say? I'm sorry you're feeling so lousy, along with everything else going on at home. I know it can't be easy for anyone at your house right now. Dementia is difficult for the entire family, especially for related caregivers. My best to all of you dealing with that.

Have you had any fibrosis score updates since EOT?  You mentioned having a number of new tests done, how have your numbers been up until yesterday? It sounds like these latest issues have taken their toll on every part of you. I hope you can get this current ordeal resolved quickly. When you do, I think it's time to take that dream vacation you've always promised yourself! We all know you've earned it. You're welcome to vent anytime you feel the urge! We're always here to talk... Good luck!

Tig

1. Went to my primary care doc yesterday. had a qt of blood drawn at docs office.  A few weeks ago I started having restless legs at night. Last week my palms started looking red with splotches. 3 days ago my face began to feel flushed. Day before yesterday I didnt feel like getting out of bed..flulike symptoms

Ive gone through carpel tunnel and ulna nerve release , hip revision surgery, then a Physical Therapist dislocated it. more heavy drugs..All since last August.

I cant talk with my wife about this, she's got enough on her plate with a mother with dementia.......

I'm worried and just had to vent

Thanks

Thanks Matt and nice hearing from you.

its amazing how active the gilead board still .

guess its because its been approved.

amazing isn't it, that in trial it cures folks but the FDA still wants the IFN,eh?

bcbs of Florida is his ins co. They apparently are approving it in other states according to him. So maybe.......

how are you feeling and what are your plans to get rid of this ...?

mike

Hey Mike

Congrats on your 6 month from EOT , the 24 week Abbvie Turquoise II arm has had no relapses that I have seen in any forums or blogs. But its likely that their will be some or those have have left the trial (lost Contact) which degrades the % of SVR 12

Terry who was the last forum member on the Turquoise II trial I believe is waiting for his 12 SVR, have not heard from him lately.

Maybe 2013 was your year to get all your medical issues out of the way, like a 75, 000 mile checkup. Lets hope so

That insurance company sound almost criminal , what company did he have? 

matt

Thanks Tig for your kind words and the info.

I don't see where they have posted the results with cirrhotics..It may be that they haven't released them. 

 I think when they do they Abbvie is going to jump to the fore front of Hep c treatments.

I have a friend trying to get  his insurance to cover the Gilead drugs. They are denying him.

 He has to take IFN with them  at this point . He says he'd rather wait than to go thru that again, even if they do decide to pay....hopefully that will change

I guess we will just have to wait and see what the FDA is going to require Abbvie to do if and when they get approved.

 People aren't talking much on any of the Abbott trials threads that were involved with the Turquoise study with me, so maybe I'm the exception and not the rule.....

Hope not......

Hi Mike,

Welcome back! It's great to see you're doing so well. Except for all the bone problems and surgery that is. What a year of medical drama you've had! Like the study trial, it seems like you fought hard and won. Congratulations on the 12 month UND! Obviously SVR and then some. I'm so happy things are finally going the way you hoped for, good job!

i found this info on the Turquoise II trial results. Are these what you've been looking for? Let me know and if not, we'll keep looking. Stay in touch, it's good to hear from you!

Tig

http://ir.enanta.com/mobile.view?c=147990&v=203&d=1&id=1883481

even though the ABBVIE trials threads seems to have all dried up I will still post my EOT results. Am I the last man on left?:)

MY one year draw is still UND and all the inflammatory markers are WNL even after wrist aand elbow decompression surgery, a hip revision ,and the hip dislocating and a closed reduction. (tons of drugs) 

I cant believe the company hasnt released the results of these trials yet............

I feel like this may be a message in a bottle, but I know everyone suffering from this horrible disease will be looking a cure not in years, but in months. I pray everyone finds their way into treatment and those crooks they call   insurance companies will agree to pay for......

Sincerely,

Mike

Hi Mike, congratulations on your 12 weeks UND result, this is wonderful news!  Sounds like SVR to me too!  You have good reason to be proud of your achievement in finally ridding yourself of this virus! 

Wishing you all the best for your future, and thanks for sharing your treatment journey with us.  We all benefit from hearing about other peoples` experiences and it`s a joy whenever we hear of a successful outcome. 

Hi Mike,

Congrats- sounds like SVR to me. Like you, I still find it hard to accept that the virus has gone. The cirrhosis continues of course, and I have to adjust to that, knowing it shouldn't get any worse. Just ENJOY! Cheers.

Hello Mike 

Congrats on your 12 weeks results, yours numbers look real good. They actually look good from the beginning through the end showing how little Abbvies quad treatment causes side effects on the labs. After reading your labs I got jealous and wished I had your numbers While I was on the same drugs, of course I was on the 12 week arm and who knows what would had been my outcome if I went 24 weeks. 

I am very happy for you as you have had other failed SOC HCV treatment and you deserved a break. I know for all of us that have lived with HCV for 40 plus years it's a life changing moment that you will never forget.

So it's upward and onward so enjoy the rest of your life. Hoping to be there with you.

Matt

From the cuff.

Thought I would share my 3 month follow up. Cautiously optimistic, but I was told that I have cleared.

Its hard to describe what it feels like to be rid of something that has been with me since probably 1972.

Although I still have cirrhosis, I cant tell you what not having that constant insult feels like!

 For all those on treatment now, ones that didnt clear, and the rest on the fence, please know that IMHO within the next 18 months everyone will have access to drugs that will put you at the same table I am sitting. A table without this damned virus.

For the first time in your lives you can have HOPE.

I know this from the bottom of my heart

I am blessed to have found my way to this trial and blessed to have found a thread I can ramble on

Thanks everyone

Congrats on those results, Mike, excellent  And how reassuring for you!  Yes, you`re right, being part of an online community like this has untold benefits.  Nothing beats sharing your ups, downs, and triumphs with people who truly understand how you feel.

Best of luck with your ongoing health issues, keep moving forward.  And thanks for sharing your lovely photo! 

Hi Mike,

Great lab. results! Thanks for the relaxing, beautiful photo. Cheers.

Hey Mike 

Great to hear from you, more importantly fantastic to see you are still virus free after 8 weeks from EOT with all the other physical non HCV issues you have run into during your 24 weeks of Abbvie trial treatment.

Yes their will be a lot of new HCV drugs coming out in the next 15 months and the uses of Interferon with be less.

Hope all continues to go well for you Mike your Lab numbers really looks great, some day I will join you and will look back at those days as the days when we use to have HCV.

Matt 

I just wanted to thank you for your amazing post on hepcfriends today.  I read your post and I'm so happy you shared the good news about inspiring possibilities in how these new drugs might just turn things around.  It sounds like it's been quite a long haul for you and hope you keep on trucking!  THANK YOU, SOOO MUCH for sharing this glimmer of hope.     

I also want to thank everyone for the advice, thoughts and well wishes   I have found here. Sometimes the internet gives folks like us a common thread to share what our spouses, friends and even doctors just don't understand.

much aloha to all

Mike

Haven't been posting much. Hope this finds everyone doing well. 

Wanted in infuse some positive Vibes

Attached are  my 2 months post EOT labs

Crazy that they say i have cirrhosis but all the inflammatory markers are WNL

I have had Wrist and Elbow Decompression Surgery and  Upper GI Since EOT!

I am looking at Bilateral Hip Revision Surgery before Christmas too.

Considering all I have been through with my back since April, its truly a miracle that I'm still virus free.

Just want to tell everyone (especially you Matt) That I know that Gilead & Abbvie will have their drugs on the market really soon.

I asked my Doc about the IFN.   He said they would prescribe it  with IFN per the FDA. Then with a smile said."but we cant be there to make sure people use it."

He says the drugs we are taking are working without it... Stay Tuned

Best of luck to all who might be still tracking this dusty thread....

Going for my 2 week post treatment draw this a.m. (6 hours round trip.)

trying not to read too much on Medline these days. Some threads have become pretty negative. I guess I cant blame some for that.

  Id like to share Something I've experienced  lately. . Might be due to the normal stresses of running a restaurant with 55 20 somethings... with this chronic pain stuff. but  after stopping my meds I have actually felt fatigued more so than when on the drugs

Well, as they said in one of my all time favs as a child..."I'm off to see the Wizard....."

Wishing everyone the best

Best stories ever...

Congrats Mike!

Good job. Time to relax.

Hope your back gets better and all your EOT VL's are UND.

thanks Bob and thanks chris.

leaving for our 2 hour drive in a few minutes for my final draw,exit ultra sound and EKG.

kind of sad in a way because we were so fortunate to have a trials staff that made my wife and i feel like family and not lab rats.

we have been given the option of home health care for our EOT draws but may forego it just go go down and visit.

crazy,eh

going to be a long 4 weeks, grateful they let me know every 2

Thanks to you guys for hanging with me and sending positive vibes.

Congrats Mike on making it for the whole 24 weeks, you deserve only the best outcome.

I know that feeling of security of taking the daily Meds. Without them you are on your own.

Having 24 weeks to reach all the deep areas of your liver and time to deal with the Rav's you  will have everything working in you behalf.

Try to sit back relax and enjoy the feeling of weightlessness, that's what you will feel like in about a week or two after stopping the Meds, the first week you may feel less energy but it come back slowly week after week a little more and more.

You have a great attitude and you always have, I appreciated all the positive vibes you sent my way.

Matt

Good for you Mike, i say the same thing. We have done our best no matter what.

Very good luck to you. ~Bob

Last Dose 7.16.13

Honestly? I'm more afraid than when I took the first one.

I've been dealing with a blown disk since April 4. Its been a miracle that these drugs have worked since then given the fact that ive been on pain pilss, havent slept 3 hours in almost 4 months. I have contributed nothing since then. no meditation, no exercise, not the best diet...

Im just grateful to have been given an opportunity to kill this Dragon after being told there was no hope. If it should come back, Im at peace with myself knowing that I did everything I could . 6 months of seeing my labs normal and no trace of the virus has been a miracle in itself.

chronic pain is something im not dealing with very well and apologize for ranting

wishing all the best

Mike

-- Edited by balagan51 on Wednesday 17th of July 2013 12:58:09 AM

Hey Mike

Congrats on week 20 , my lab results were also super late.

Keep the flow of chi going toward your liver.

Matt

Thanks Jill.

That`s excellent news, Mike, another good result!  I know it hasn`t been easy for you, but these continuing UND results must be giving you a huge boost and great encouragement. 

Not much longer to go now...best of luck, and thanks for the update. 

 On June 17 I went for my monthy  draw. There was a problem with the lab. I just recieved the results today.    

Week 20   UND. all other labs WNL

EOT July 16. Praying for the best.

Looks like most of the studies most here enrolled in back in Jan are winding up. I sure hope the respective companys conducting these trials learn enough that in the future, folks like ourselves will be assured a cure for this horrible disease.

Hi Valerie,

Geno 1b is now regarded as easier to treat than 1a, with the new drugs. With the old SOC, the 1a's had the edge, but the inherent structural stability of the 1b virus makes it more resistant to RAV's( drug-resistant mutations). Cheers.

Thanks Matt

For the chart, it does give me hope, when I knew I was a 1B and then a TT on top of it.  It kind of bummed me out.  But the nurse did say these drugs were good. 

Hi All,

I am finishing my last day of week 6 and go on Thursday for a visit.  I assume things are fine as my nurse hasn't called.  I hope the last 6 weeks pass as quickly as the first 6 weeks.  I am really tired, but keep going(maybe no choice still working fulltime - long days).  I do have some dry skin and that is unusual, the headaches are gone except the odd one. It will be interesting to see my blood work from week 4, because my white blood cells were up slightly, and mine are quite low. I had to use neupogen the first time on treatment, with the interferon every week.  So, nice not to have shots twice a week, this time. By the way, I am genotype 1b, and a TT(which is suppose to be the hardest to treat) But my nurse said these drugs are so powerful, that there really is no reason to test for the CC, CT and TT anymore.  I hope everyone is doing great too. take care

the pain i am having is from a failed hip replacement in jan 12

its apparently caused a shift in my cervical and lumbar spine

Its amazing how anything can cause one to lose focus.

thanks for  your concern and advice.

 Arent you about done yourself? 

 praying that 3 months from now you are still SVR

Hey Mike

Sounds like your going through a down swing, I can relate. The meds seem to most days have me feeling up and in control, but there are others days that are downers where I'm doubting myself, and over analyzing little pains, anomalies of my Liver, spleen, and Gallbladder.

The only real painful event I had was when I took my PM dose before I had eated anything and that caused some real pain in my stomach which took about 20 minutes to dissipate with food and breathing. 

Is your pain in your liver area? Can you relate it to stress, foods, or taking of meds?

If it's clearly real physical pain caused by inflamation or other issues your Doc should have some insight. Sometimes we are hesitant to mention to the Trial Doctor because fear of being booted out of the program, but remember they are pulling for you and expect some complications. Or possibly you might have a friend thats a Doctor or othe connections. 

If its stress or nerves can you find a place to chill out by yourself and practice deep breathing and meditation, or prayer or whatever calms you.

Sometimes exercise or walking can release hormones that act as pain relief and calming agents, this works for many people.

Also trying to find something good to do for someone else less fortunate that you. Logging on the the forum and building up others can focus yourself on someone other than oursleves.

Your going to make it Mike it's just a bump in the road,  Feed your Faith and your Fears will starve to death.

Matt

Hi Balagan,

I don't know why you're nervous about your Trial! Your blood work is fantastic. I must admit to being envious. Even though you're on Ribavirin, your Hb only dropped to a minimum of 13.3, and is now 14. After 12 weeks of triple Rx with Victrelis, my Hb was 8.6, and ended up at 7 after 48 weeks!  No wonder you guys are having fewer side effects.  It's a great indicator of what the newer treatments will bring. Keep up the good work. Cheers.

 im really nervous about my trial. i have had to take pain pills and some muscle relaxers these past two weeks

so im worried that its going to put me at a disadvantage in regards to treatment

Just got home from my last biweekly blood draw (12weeks). so i guess i will know so enough.

ive attached my lab results

going monthly till the EOT, which is good and bad. Ive been spoiled with constant updating and now having to go 30 days is a little nerve wracking.

when reading trishes posts about having to wait, i honestly didnt know how she did so and still have any fingernails left..  i think im going to have to tape mine.

i remain cautiouly optimistic

mike

 Matt, please let me know how things are going. i understand that you are in a 12 week arm and you should be wrapping up soon

praying for you. i know you are going SVR...

-- Edited by balagan51 on Monday 22nd of April 2013 10:54:52 PM

Great news, Mike, congrats on still being UND!   You`re making great progress, and your Hgb level is very good!!   What a nuisance about your strained neck, hope the pain eases up soon.  Must have been amazing seeing the Allman Bros! 

I`ve joined your threads together to keep all the posts in one place, by the way.  ~ Jill

Great news !! Enjoy Allman Bros, they awesome.

Hi, i just finished 4.4.13 Sapphire I, was double blind; at EOT told got drugs and then got call 9 days later re virus being undetected. now 2 weeks post EOT, 1st blood draw 2morrow w undetected.

Does anyone know how the PH2 people (Abbott Aviator), the pre-Sapphire PH3 are doing with SVR? they s/b at week 40 by now.

Hey Mike

Great news , you are two weeks ahead of me and on he fast track for SVR.

Have great time at the Allman brothers concert, let me know how Greg Allman is doing he had a Liver transplant about a year ago due to the Dragon HCV.

Your lab results look very goods, especially your billirubin, mine has not drop to that level yet.  How are your AST and ALT scores ?

I think I remember you saying that you are on the 24 week arm of the study, is that correct?

Wish I was on that arm, my study end after 12 weeks. I have only 3 more weeks to go.

I have attached a chart that will inspire confidence in these combo drugs on the previous study called Avaitor which did not include ABT-267

Matt

Meant tp post this on my Abbott thread

apologies

Just received  a call from my coordinator...still UnDEtectABle at 10 weeks!!!!

Going in for my 12 week labs on Monday

HOPING for more good news

HGB 14

Bili 1.2

Platelets Up to 120 !

sides: insomnia,transient anxiety

Strained my neck & finally told them I had to take something for pain, which I have an ample supply of from an operation last Jan.

Very concerned about how this may effect the plan.

She gave me the green light to use them judiciously .

We decided to live a little and are at the Allman Bros Wannee Festival on the Suwannee River.

good thing is its half way to the Trial location!

wishing everyone continued success in our battle with the Dragon,

Cautiously Optimistic I remain,

Mike

Hi Everyone,  I just returned from the hospital and week 4. The good news is that the Dr. still believes that I am on the real thing as some of the tests are showing activity that indicates that something is happening.

Next week I should have a better analysis, it seems that all the data from these trials shows that by the end of week 4 you should have cleared the virus or at the very least have <25. She said that after todays bloods are analysed if I am not responding that they will call me back in next week to re-test. So I guess if no phone call next week I can assume that I am responding well ! !

The biggest factor that they have been able to identify so far is keeping to the 12 hour regime of meds. My advice is to take the meds no later than 30 mins on either side of 12 hours!!

Ok,  side effects for week 3+4 were pretty much non-existant. I had a couple of small headaches, no nausea, dry skin so a little itchy but that was about it.  Feeling good, keeping the faith, crossing my fingers etc....

Will check back in next week or 2 weeks from now.

My mantra is Hep C get out of me... I repeat it everyday,  "Mind over matter"!

Hello Brittney and welcome to the Forum

You have found a good place for people who can relate to your situation, the site is full of great insights on all things HCV.

Make sure you read all the threads on Clinical Trials and use the search engine for questions on topics that you have interest in.

You are nornal to have nervous feelings about whether the treatment will work, the track record so far has been very good.  So stay positive and keep your vision on a good end result.

I will paste in some thoughts from my own experience with the Abbvie Meds from a early post for a member named Trish thats on your same study that might help ---

(My first week was a whirlwind of events which I wish wasn't the case, because if I had to do over I would have taken alot more days off work and other social events. I could tell I was on the Meds, but the side effects were not that debillating. Trish you already have the habit of twice a day taking the Meds so remembering what Balagan51 said he did after taking his Meds might be useful. He mentioned finding a quiet place to meditate after dosing to uptake not only the physical metabloic aspect but the body mind power of intention aspect.From the physical metabolic side,  remember that these drugs are going to render millions of HCV dead because it does not allow them to repicate. The first two weeks you will be expunging millions of old HCV so drink plenty of high quality filtered water. So give your body only the best quality foods and drink to do its job.Of course this is from only my perspective, but I wish I could have known these insights.  Also if your billirubin elevates do be alarmed it seems to be normal in some participants)

brittney most of the posts from our members are just there viewpoints, opinions, and observations they are not scientific proved facts.The truth on how effective treatments will be is distilled down in time.

The power of the forum manifests itself in the loving support and encouragement of its fellow members going through HCV and all its personal isolation that make a person feel alone on there own, but not alone because now we have hundreds of other going through the same worry's and distresses, but now we can communicate our thoughts to others that truly understand.

Please feel free to ask or post a concern any time.

Matt

I just started treatment in the AbbVie clinical trial for ABT 450/ritonavir/ABT 267 & ABT 333 with Ribavirin or a placebo. I have genotype 1A and I'm nervous about whether or not this will work. I don't know who to talk to about this and found this forum for people who are going through the same thing. I feel lethargic and heavy, shaky, itchy, and have been sleeping a lot. Any advice or experience with this would be much appreciated. I am also going nuts trying to figure out whether or not I got the placebo or the ribavirin, I just need to let go and give it up to God...i guess I'm just scared and curious and tired.

It's great to hear you are undue table still. it seems that Matt and you both went undetectable at week 6, so I'm just going to have to sweat it out the next few weeks. Did you suffer from any insomnia? I've had trouble waking up early in the morning and being unable to get back to sleep. keep the good news cominI - it helps the rest of us behind you hold on! Alan

Congrats to you, Balagan51, that is very good news! 

Thanks for sharing this, you`re doing great so far, and it sounds like you`ve worked out a good strategy for keeping yourself as healthy as possible. 

This result must be a great motivator for you, keep going!  ~ Jill

Just got a call about my 8 week lab from 7 days ago.

* Still Undetectable*

15 weeks to go...

The folks running these trials cant talk about others. They have to remain scientifically objective

Its great we have this forum to share our experiences

So good to hear all the positive results from folks on all their respective trials.

 I remain cautiously optimistic