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Hepatitis C Main Forums => Living with Hepatitis C => Topic started by: Tommy E on June 18, 2017, 07:30:54 am

Title: Hello and in treatment! Yeaa!
Post by: Tommy E on June 18, 2017, 07:30:54 am
Hey guys! Just started my third and last bottle of Harvoni. First time treatment with almost no side effects. Actually, Harvoni makes me feel relaxed. I do notice a tendency to headaches if I'm doing something that may create headaches like wearing my hat for hours. But no complaints here.

You know what's weird? I had given up on treatment when I heard about the price of Harvoni. My previous doctor didn't do anything to help me. Never mentioned getting me into treatment. I didn't much like her (for other reasons) so I got a new doctor who immediately sent me to a terrific gastroenterologist. This doctor told me he was going to treat me and not to worry about the price of Harvoni. His office would deal with the insurance company. He was a 'grab the bull by the horns' kind of doctor. So here I am 3 weeks from completion and $0 out of pocket costs - except for the office visits of course. How good is that! 
Title: Re: Hello and in treatment! Yeaa!
Post by: gnatcatcher on June 18, 2017, 09:33:18 am
Welcome, Tommy!

Glad your treatment has gone so well. At $0, you have set a new record (AFAIK) -- some of us paid just $5 per bottle in 2015 because Gilead was drumming up business for Harvoni. Interesting that it relaxes you. Some of us got the "Harvoni High" (lots of extra energy); others were fatigued. As for the headaches, you're staying well hydrated, right?

May you sail through these last 3 weeks.

Gnatty
Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on June 18, 2017, 12:15:37 pm
Hello Gnatty and thank you. I'm pretty good with hydration. Loads of bottled water in the fridge though I didn't know about the link between headaches and keeping hydrated. I've been trying to keep my liver in shape. Doc says I have mild cirrhosis which may clear up after treatment. Fingers crossed this all works out. 

ps. congrats on your results.
Title: Re: Hello and in treatment! Yeaa!
Post by: gnatcatcher on June 18, 2017, 05:39:57 pm
Yes, your mild cirrhosis may indeed go back to just fibrosis, as mine did. Several other people here have had their F numbers go down quite a bit after successful treatment. Good thing you "fired" your original doctor and found a specialist who knows the game, so that you didn't develop more serious cirrhosis before starting treatment.

Harvoni seems to like a lot of water. My hepatologist's assistant stressed liquid intake, and there are people here who said it minimized their headaches.

Thanks for the congrats. I'm looking forward to congratulating you when you reach the official cure point.

Gnatty
Title: Re: Hello and in treatment! Yeaa!
Post by: andrew j on June 18, 2017, 08:16:58 pm
Nice one, Tommy!

I had a breeze of a time on Harvoni like you.
... Well, maybe not exactly like you ... I was really unwell before Tx - but things just got better and better for me - almost from Day One.

Good luck with the rest of your Tx.
Sounds like you won't be needing it!

Best wishes,
A.
Title: Re: Hello and in treatment! Yeaa!
Post by: Lynn K on June 19, 2017, 02:47:59 am
Hey Tommy congrats on getting treatment and being almost finished. I also have cirrhosis by was diagnosed 7 years before I finally was cured with Harvoni two years ago. 

Not sure for me that I will improve but at least I should stop progressing. So you could say that Harvoni saved my life!

Congrats again 
Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on June 19, 2017, 08:51:13 am
Andrew, we're more alike than you think. I was losing weight (dropped 35 lbs) and losing sleep over itchy skin before treatment. And yeah, from day one things improved. Ditched ichy skin meds and now up 10 lbs.
Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on June 19, 2017, 08:54:28 am
That's a huge plus, Lynn. I'm hoping Harvonni will save mine too. Like everyone else here, I've got things to do. :) Cure verdict around Halloween.
Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on June 21, 2017, 04:00:06 pm
After second month, blood tests showed negative viral load. Nurse said this is exactly where we want to be. :) Harvoni treatment is over July 6.
Title: Re: Hello and in treatment! Yeaa!
Post by: andrew j on June 22, 2017, 10:52:17 pm
Good stuff!
Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on June 28, 2017, 11:32:43 am
Thanks Andrew.

8 days left in treatment. Any effects or changes to getting off Harvoni? I have noticed a slight change in my joints (stiffer) but that may be due to old age. Dunno.
Title: Re: Hello and in treatment! Yeaa!
Post by: gnatcatcher on June 28, 2017, 01:11:22 pm
Well, since Harvoni gave me lots of extra energy, I was sorry that the energy boost disappeared soon after the last pill. The only other noteworthy change was that I had much less dental plaque at my post-tx six-month cleaning, and what there was wasn't rock hard, the way it had been before tx. A few others in the Harvoni class of 2015 also noticed less plaque. The quantity of my plaque has gone back up, but it's stayed less hard.

Congrats on nearing the finish line.
Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on June 28, 2017, 03:16:16 pm
Interesting. I never got the energy boost. Mine was a relaxed laid back kind of experience. Maybe I'll get more energized. We'll see - and looking forward to it. 
Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on July 01, 2017, 03:13:10 pm
I gotta knock off my 2 morning coffees. I'm getting heartburn later in the day. It's been about 5 years since I experienced heartburn. Also read that Harvoni doesn't play nice with some people's heartburn problems. Anyway, only 5 days left of treatment. 
Title: Re: Hello and in treatment! Yeaa!
Post by: abacomike on July 07, 2017, 05:47:41 pm
Hi, all.  It's been almost 2 years since I last posted to this forum.  Diagnosed Hep C in 1996.  Tried interferon injections + Ribavarin in 2006 but did not work.  Took Harvoni for 12 weeks in 2015, but 4 weeks after treatment, virus was back.  Started Veikira Pak in October of 2015 with Ribavarin but had to discontinue regimen due to suffering a hear attack.  In April, 2016, was diagnosed with liver cancer caused by Hep C virus (heptatic carcinoma).  In September, 2016, had surgery to remove 3 malignant tumors (liver resection) and after 2 hospitalizations and 2 weeks in ICU and 7 weeks of rehab, I got home.

Doctor just put me on Epclusa 11 weeks ago.  2 blood tests show no detectable viral count.  Doctor just informed me he wants me to take Epclusa for another 12 weeks because I have failed 3 treatments for Hep C and wants to give me another 12 weeks to rid my body of Hep C before cancer recurs.

I agreed to the additional 12 weeks (total of 24 weeks) which I will start next Friday (have 6 pills left from first 12 week treatment).  I've really been through a lot and am lucky to still be alive.

Has anyone been on Epclusa for 24 weeks?  Sure would like to know the chances of being virus free after 24 weeks.  Am scheduled next Thursday for 3rd blood test to determine if I have any viral count.
Title: Re: Hello and in treatment! Yeaa!
Post by: andrew j on July 08, 2017, 08:15:44 pm
Hi Mike,

I can't answer your question, as I haven't taken Epclusa myself, or heard of it being prescribed for 24 weeks - but looking at a Gilead fact sheet (via Google), I see that 24 weeks is prescribed in certain circumstances.

I'm sure your Drs know what they're doing.

24 weeks of Harvoni is routinely prescribed.
Epclusa can't be that different.

Looks like you've been through it a bit there, my friend.

Your results are looking good!

Best of luck with the rest of your Tx - and here's hoping for better things on the health front.

Best wishes,
A.
Title: Re: Hello and in treatment! Yeaa!
Post by: abacomike on July 08, 2017, 08:27:34 pm
Hi, A.

I appreciate your kind words representing kind thoughts.  Yes, I've been through the mill, so to speak.  But I always have hope.  I won't get excited by undetectable viral counts until I take a blood test 4 months from now (4 weeks after the 24 weeks of treatment) and the virus is still undetected.

You can't imagine the depression I went through when I learned that Harvoni failed to eliminate the virus.  My genotype is 1a - the most common strain - yet it just didn't work.  I'm over that depression now and pray and hope for the best.  If it was meant to be that I cannot defeat this virus, then so be it.  I only worry about cancer recurrence which is more likely than not.  I live alone and it is difficult for me to care for myself in case of serious health issues.

Again, thank you for your words and thoughts.

Mike
Title: Re: Hello and in treatment! Yeaa!
Post by: andrew j on July 08, 2017, 08:38:08 pm
Sure, Mike.
Title: Re: Hello and in treatment! Yeaa!
Post by: andrew j on July 08, 2017, 10:44:37 pm
... I live alone too - and have also been through some big health issues (different to yours).

It is about thoughts and prayers, I think (have some from me!) - and doing the best you can.
You will know that already.

It's good that you've developed a philosophical attitude.
That helps, too, I think - with everything!

Once again -  hoping for some good outcomes!
You deserve it!

Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on July 27, 2017, 04:07:07 pm
Results after finishing treatment. I guess this is good. Hopefully in 3 months still undetected.

Test Information:       Comment      The quantitative range of this assay is 15 IU/mL to 100 million IU/mL.
Hepatitis C Quantitation       HCV Not Detected
HCV log10   
Title: Re: Hello and in treatment! Yeaa!
Post by: andrew j on July 27, 2017, 10:46:26 pm
This is good, alright!

... All you need now is a bit of patience - and to keep looking after yourself!

Best wishes,
A.
 
Title: Re: Hello and in treatment! Yeaa!
Post by: gnatcatcher on July 27, 2017, 11:15:26 pm
Yes, Tommy E -- that's exactly what you want to see -- congratulations!

Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on October 30, 2017, 03:14:40 pm
I just now got the 3 month after treatment end, test results. "HCV Not Detected". This was posted in my online portal with appropriate blood test date etc. I haven't spoken to the doctor yet but I'm thinking this means I'm cured.
Title: Re: Hello and in treatment! Yeaa!
Post by: gnatcatcher on October 30, 2017, 04:10:37 pm
Yes, you're CURED -- SVR12! Welcome to the club.
Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on October 30, 2017, 04:41:26 pm
I feel like I'm floating an inch or 2 off the floor. 
Title: Re: Hello and in treatment! Yeaa!
Post by: abacomike on October 30, 2017, 05:28:28 pm
Congrats, Tommy.  I am hoping for the same.  Finished the 24 week regimen of Epclusa almost 4 weeks ago.  Going to Lab this Friday morning to have blood test.  Hoping for good results - no detectable viral count - i’ve Been in limbo for 3 months since the Doc did not think labs were necessary until 4 weeks after my last pill.
Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on October 30, 2017, 05:56:31 pm
Thanks, Abacomike. All the best this Fri!
Title: Re: Hello and in treatment! Yeaa!
Post by: Tommy E on October 30, 2017, 05:58:05 pm
Gnatcatcher: What is SVR12?
Title: Re: Hello and in treatment! Yeaa!
Post by: gnatcatcher on October 30, 2017, 07:37:13 pm
Tommy, SVR12 means "sustained virologic response 12 weeks after the end of treatment"; it's shorthand for the official cure.

Abacomike, here's hoping you get your wish -- and fast results. (Many labs send the viral load test out to a specialty lab, and it can take quite a few days for the results to come back.) You've already had to be an unusually patient patient.

Gnatty