Hep C Discussion Forum

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

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

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......

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,

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.

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

Hi Mike,

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

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.     

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

Good job. Time to relax.

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

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

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

Thanks Jill.

 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.

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. 

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

 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 !! Enjoy Allman Bros, they awesome.

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

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"!

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.

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