1.5 years post

[ricpark]

Sorry not posting for a long time, dealing with life.
But, had my new rural Doc include with my checkup labs hepC for my peace of mind. Good news HepC not detected one and a half years post and AST 22, ALT 27 plus all other blood work normal.

Only long term effect I think is pain in joints in hands (not bad can live with). Hard to tell what is from Harvoni and what is from Chemo for cancer just before treatment for HepC (Harvoni was nothing compared to chemo). Gave up on taking anything for my leg,foot,hand cramps, still have them. I have Barrett's esophagus (upper endoscopy) from heartburn, Trying to kick Prilosec been on for 3 years (put on during Harvoni treatment). The longer you are on Prilosec (proton pump inhibitor) the harder to to get off (body makes more acid making cells so when you get off heartburn is much worst). It's a rock and a hard place, cancer from Barrett's esophagus or Prilosec. My goal is to take no drugs and treat heartburn with tums and Gaviscon don't know if I can make it (long term heartburn can cause Barrett's esophagus and then esophageal adenocarcinoma-fatal cancer)

[lporterrn]

What a great way to end 2016 and begin 2017! Congratulations. Sounds like you are working towards your goals.

[KimInTheForest]

So great to hear from you, Rich! My treatment partner. We started the same treatment (12 weeks Harvoni+ribavirin) on practically the same day. You started 1 day ahead of me, if I recall.

I too am still clear of Hep C. Such a good feeling after all these years.

Keep the faith!

kim

[chino1969]

It's been 1 1/2 years that I've been free of Hep C after 24 weeks of Harvoni.

I'm taking part in two clinical studies at The Univ. of Penn. Hospital in Phila., PA.  One is being run by Gilead which studies and tracks those who have cleared Hep C.  It involves blood work every 6 months along with a FibroScan every year.  It is a 5 year study.  The other study is one involving a more sensitive method than the current AFP test.  I do have mild cirrhosis.  My Hepatologist is hopeful that the cirrhosis will remain stable and may possibly improve now that the Hep C is gone.  I don't drink and take reasonable care of myself.

My blood work is all normal with the exception of low platelets which my GI and Hepatologist keep an eye on. 

So far everything is encouraging and looking much better than several years ago.  I hope everyone can be cured one day.   

[chino1969]

So great to hear from you, Rich! My treatment partner. We started the same treatment (12 weeks Harvoni+ribavirin) on practically the same day. You started 1 day ahead of me, if I recall.

I too am still clear of Hep C. Such a good feeling after all these years.

Keep the faith!

kim

Kim,
We had similar treatment failures in the past as well as the big success.  Do you feel different now that you are cured?  I lived with Hep C for so long that I am still adjusting to this new feeling.

[Lynn K]

Hi chino and congrats on the 1.5 years!

I will be 2 years post on May 4th. Would you have that study number? I would like to get involved with something like that if I could.

I also have cirrhosis with low platelets mine improved from 90 something to 110 but still low. I had a Fibroscan before treatment result was 27 and one year post treatment was 33.

How  low are your platelets and has there been any changes to your Fibroscan and platelet counts from before treatment and now?

Thanks

[chino1969]

Hi chino and congrats on the 1.5 years!

I will be 2 years post on May 4th. Would you have that study number? I would like to get involved with something like that if I could.

I also have cirrhosis with low platelets mine improved from 90 something to 110 but still low. I had a Fibroscan before treatment result was 27 and one year post treatment was 33.

How  low are your platelets and his the as there been any changes to your Fibroscan and platelet counts from before treatment and now?

Lynn,
On the bottom of my HIPAA Auth. Form is the following; Gilead Sciences, Inc. GS-US-337-1431.  The Protocol Title is: A Registry for Subjects with Cirrhosis Who Achieve a Sustained Virologic Response Following Treatment with a Sofosbuvir-Based Regimen without Interferon for Chronic Hepatitis C infection.

My Fibroscan in June 2016 was 18.4.  I'll get another this June and will let you know
My platelet count before treatment was around 70.  That was before my 1st treatment of Solvadi/Olysio in 2014 of which I relapsed.  Platelets dropped down to around 43 when I was undetected with Solvadi/Olysio in 2014.  They came back up after I relapsed.  My AFP after relapse shot up to 477 which alarmed my local GI who was in the process of getting me approval for 24 weeks of Harvoni.  It was at this point I did my own research and found my Hepatologist at The Univ. of Penn. Hospital.  I began seeing him every 6 months and he stays my local GI in the loop but he is clearly the Lead.  My AFP now resides around 3.4. 

My current platelet count is around 30 and I just had an endoscopy with banding.  My local GI performed this with a platelet infusion and I am due for one more in March.

I'll keep you in the loop.

Thanks

[KimInTheForest]

Kim,
We had similar treatment failures in the past as well as the big success.  Do you feel different now that you are cured?  I lived with Hep C for so long that I am still adjusting to this new feeling.

Hi Chino. I too am still adjusting to the new feeling of no more Hep C. But I have noticed better mental functioning, and am thankful for that. I now have some serious health problems post-treatment, which actually arose midway through treatment, and which I attribute directly to the treatment (despite the people here who will dispute that correlation - my body has spoken). So, my feelings about the whole experience are honestly mixed. But I am of course glad to know I am rid of Hep C, and to have better mental functioning. This was my first attempt at treating it. I never went the interferon route in earlier years.

best,
kim

[Lynn K]

Wow chino rough stuff

My AFP was about 30 or so most of the time it is now since treatment at just over 10.

I also had grade 3 esophageal varicies in 2012 that I had banded so I had 4 upper endoscopies over 4 months to complete the bandings.

I my signature you can see I treated 3 times with interferon in the past and relapsed after 12 weeks of Sovaldi and Olysio. So i then started treatment with Harvoni in Nov 2014 for 24 weeks and we later added ribavirin for 15 of those weeks.

Best of luck to you hope you have improvements in the future and thanks for the info about the study.

Edit I found the study https://clinicaltrials.gov/ct2/show/study/NCT02292706?show_locs=Y#locn

Says it is by invitation only maybe if I change to UW Seattle I could get picked up for it.

[lporterrn]

You can cal either of those Washington locations Lynn and ask if they will consider you. If you have any trouble reaching them, you can try to get contact info through Gilead: To learn more about the clinical trials that are underway and to find out if a study is enrolling patients in your area, please visit www.clinicaltrials.gov or call 1-(800) GILEAD-5 (800-445-3235) between 8:00 a.m. and 5:00 p.m. Pacific Time.

[Lynn K]

Thanks Lucinda!