Author Topic: Hep C returned (Read 20274 times)

yag1064 · « **on:** February 09, 2015, 10:39:26 pm »

To All who know me,
I could really use what this group has..love and understanding. I just has told that my Hep has returned. I am really having a hard time with this. I finished a 12wk treatment plan of Sovaldi, Interfurion, and Ribaviran. After 2 weeks my tests were all showing no viral load. I took another 6wk after treatment and all seemed good. Well I just received the results of my 6 month blood test and the virus is now detected again. It hit me like a ton of bricks. I believed I was past this disease.
I really feel depressed. I don't know what is ahead of me. My GI is referring me to a University Dr. I will probably have to do battle again with my insurance carrier. This was my second treatment. I don't know how many times I will be allowed to get treatment. Is there a point where everything stops? My mind is spinning.
I am glad there is a place like this to release this pain.

Rick

Lynn K · « **Reply #1 on:** February 09, 2015, 11:29:09 pm »

So sorry to hear of your relapse. I also relapsed last year after treating with Sovaldi and Olysio for 12 weeks when I tested 12 weeks post treatment. I also was very disappointed as I have been a multiple null responder and had never seen undetected on my lab report before.

Are you GT 1? If yo u are there is the newest treatment called Harvoni it is a combo pill of Sovaldi and a new drug Ledipasvir in a single pill.

As far as repeating treatments and insurance I treated years ago 3 times and as I said last year with Sov/Oly and am currently treating with Harvoni for 24 weeks with the addition of Ribavirin. This is my 5th treatment.

Hugs to you Rick and all my best

badbradley · « **Reply #2 on:** February 10, 2015, 12:21:34 pm »

Hi Rick,
I also have received news today that my treatment has failed. I treated on S/O for 12wks. It is disappointing for sure! This was my first treatment and was so hoping to be cured with this first round, but not to be. The trials are not over, we are the trials, all of us! Perhaps we should have treated for24wks vs 12wks. Hoping next time we get it right! This is a new day for Hep C treatment and I am confident that one day, we will be free from this Demon! I will not let this disease control my life! I will fight with all my might and I will defeat this beast, as will you! So, chin up friend, our journey continues. We will be cured! Best wishes.
Brad

Tpropane · « **Reply #3 on:** February 10, 2015, 12:35:59 pm »

That is so disheartening. I'm sure it is very upsetting for you. I can only imagine how I would feel. It is all of our biggest fear and for you it came true. Chin up, if you can. Ask about Harvoni. I'm on for 24 weeks and really praying for SVR.
Lynn (Are you on Harvoni with Riba for the whole 24 weeks?) I wonder with stubborn 1a with a TT allele. There is one more tell as to the type of 1a someone might have.Not sure what it means except my doc said TT is the hardest to cure???)
Please don't get too down. Be sad for a day or so then get back in the ring. Lots of new drugs being worked on and Harvoni looks very promising.
We all worry but we are still breathing. There is always hope.
:(TPropane

Lynn K · « **Reply #4 on:** February 10, 2015, 01:37:48 pm »

Hi T

I started on Harvoni x 24 but at week 10 we added the Riba to EOT or if I need to stop or reduce sooner I just noticed the prescription for the Riba is 12 weeks so maybe Harvoni alone for 9 weeks followed by either 12 or 15 or as tolerated weeks of Riba.

But the Harvoni definitely for 24 weeks

You are talking about the IL 28 gene that has 2 variations the TT or the C/T Allele I am aware of this genetic variation I have never been tested but based on my treatment history assuming I have worst case senario

Info about IL28 gene and allele it is something we have not the virus

http://hepatitiscnewdrugresearch.com/hepatitis-c-testlikelihood-of-achieving-svr.html

yag1064 · « **Reply #5 on:** February 10, 2015, 01:55:50 pm »

I know I am in the right place. Everyone's response is genuine and uplifting. We are all in this together. My gastro called yesterday and is referring me to a Univ of Buffalo doctor. Also he mentioned Harvoni as the next treatment. So that is what is next.
I am a practicing mediator and member of a sangha. The dharma say that life is suffering. Mostly because of grasping on to a story line. When that story doesn't turn out like you wrote it, you hurt. That is what I did. I originally started treatment in 2007 when all that was available was the shot and pills. After 16wk of treatment it was stopped. I was not responding. So I got really depressed and things were generally bad for me. Things changed when I decided to live with the virus, even though it is a squatter. Funny how you can't push things away. I got involved with Buddhism and meditation as a philosophy of navigating through my life. I still have one, ass it is. I relaxed and things were easier to handle. That was the way it was for 4 years. Then my friend showed me an article about the new drugs for HepC. I started with Sovaldi after battles with the insurance carrier and after the 2ND wk my test came back as not detectable, which was a first. I finished the treatment and had a good test after treatment. That's when I wrote the story of being cured. Now when reality showed me what is real, I fell off my horse. Time for me to get back up and ride.

Thank you all your compassion. You have BIG hearts

Sincerely Rick

Lynn K · « **Reply #6 on:** February 10, 2015, 03:38:01 pm »

Couldn't have said it better than that Rick. Just get up, dust yourself off, cinch up your belt, get back on that bronco and hold on for the ride!

Good luck cowboy

Mike · « **Reply #7 on:** February 11, 2015, 10:48:01 am »

Hi Rick,

Sorry to hear this news.

Harvoni would be the next step (on the bright side, at least you don't have to take 3 pills a day and weekly INTF injections).

Hang in there, keep your chin up and move forward - we'll have your back!

Best wishes, Mike

lporterrn · « **Reply #8 on:** February 11, 2015, 12:42:51 pm »

Rick and Brad,
Oh, I am reeling. I really wan't expecting to hear this news from either of you, especially so late in the follow-up Rick. I am so sorry. What I know about both of you (and I already see it in this thread), is you are made of tough stuff. But darn, this sucks.

One thing that helped me was drawing strength from others who tried more difficult treatments than I had, and did it more times. My friend Sanjiv succeeded on his 6th. We were in the same clinical trial - my 3rd attempt, his 6th, and I told myself I could do this at least as many times as he did. His story is long, but it is very inspiring: http://www.hcvadvocate.org/community/stories/Sanjiv_newest.pdf

So, hope you know we are here for you, the way you have been here for others.

yag1064 · « **Reply #9 on:** February 11, 2015, 02:37:03 pm »

Thank You lporterrn,
Your words are kind and needed. Yea there could have been other outcomes that would have been more acceptable. But that is life. It gives us opportunities to respond. How we respond is what is important.
For all the damage the virus is doing, I marvel at all the good it has done for me. It is teaching me to ride my life instead of letting it ride me. But sometimes I fall off the horse. And that's why it is nice to have a place like this to come to for rest.

Thank You All,

Rick

Maxlaw · « **Reply #10 on:** February 11, 2015, 03:47:30 pm »

Lucinda, thank you for sharing Sanjiv's story...I had not read that. That was without a doubt one of the most inspiring, uplifting stories of perserverance and enlightenment I have ever read! I learned a lot just now by reading that, so thank you.

And to Rick and Brad, keep fighting the good fight! Your cures are just around the corner, I'm certain of it. I am in a clinical trial right now, and the third generation DAA's are even better than the previous ones. Cure for everyone is near...I feel it and I believe it!

Blessings to everyone,
Max

dragonslayer · « **Reply #11 on:** February 12, 2015, 05:38:01 pm »

Quote from: Tpropane on February 10, 2015, 12:35:59 pm

That is so disheartening. I'm sure it is very upsetting for you. I can only imagine how I would feel. It is all of our biggest fear and for you it came true. Chin up, if you can. Ask about Harvoni. I'm on for 24 weeks and really praying for SVR.
Lynn (Are you on Harvoni with Riba for the whole 24 weeks?) I wonder with stubborn 1a with a TT allele. There is one more tell as to the type of 1a someone might have.Not sure what it means except my doc said TT is the hardest to cure???)
Please don't get too down. Be sad for a day or so then get back in the ring. Lots of new drugs being worked on and Harvoni looks very promising.
We all worry but we are still breathing. There is always hope.
:(TPropane

TProp,
Im also TT.. However, what Ive read, confirmed by my dr. is that the IL28B gene WAS a factor when faced with Interferon, however, with Harvoni, its not a factor. I'd imagine that applies to all the new DAA treatments, but thats a guess. But at least for Harvoni, its not supposed to be a factor.

badbradley · « **Reply #12 on:** February 12, 2015, 07:06:24 pm »

Lucinda and Maxlaw,
Thank you both for your encouragement. I have been in contact with my GI doc and there is a hepatology team being brought in for further exams etc.
I am a candidate for Harvoni but at this point nothing is decided. I will be seeing them soon. It sounds like they want to keep on top of this so I am feeling hopeful again! I will be going in for some other labwork tommorrow. As Rick stated, I as well will probably have to do battle with my insurance. Not looking forward to that game but we do what we must! Thank you again for your support. Very much appreciated!
Brad

Islandgirl · « **Reply #13 on:** February 12, 2015, 07:47:19 pm »

OMG, Rick and Brad! I'm stunned and brokenhearted for you both. I'm praying that you will be approved for Harvoni and that it will work for you!

My 12 wks Harvoni ends on the 25th and will have labs done at one month post treatment and again 6 months from then I can't imagine how I would feel to get the news you just did, although I do think about it off and on - scares the hell out of me.

I almost missed these posts but you can be sure I'll be looking for them in the future. You are in my thoughts and prayers - sending you positive thoughts and energy and praying for the blessing of complete healing. ...Islandgirl

JillLynn · « **Reply #14 on:** February 13, 2015, 12:57:33 pm »

so sorry to hear the news Rick and Brad.....having heard it twice myself I know how disappointing the news is first hand.

I got my post treatment 4 week blood test today and sure hope I'm still virus free.........but if I'm not, will try again for sure.

Harvoni was not bad......so if I need to stay on it for 24 weeks instead of 12 I will.

MAN this is a buggar of a virus to say the least. Love you Brad and Rick........I know you will both keep fighting the good fight!

Jill

yag1064 · « **Reply #15 on:** February 13, 2015, 04:11:50 pm »

Thank You Jill for your kind words. I feel much better. I have come back to living with the virus and trying to keep myself in a good place, both mentally and physically, without becoming neurotic.
I have been referred to a Hep specialist and Harvoni has been discussed. My GI said that he would like me to see the specialist before starting any treatment, but my appointment isn't until July. I guess no one has the same view of time as I do.

That's Life,

Love you all
Rick

Mike · « **Reply #16 on:** February 13, 2015, 04:13:55 pm »

Hi Rick,

What genotype are you? I'd like to research some of the treatment options for you.

Best wishes, Mike

yag1064 · « **Reply #17 on:** February 13, 2015, 05:51:45 pm »

Hi Mike I am genome type 1. I wasn't told of any suffix like a,b,...

Hope you find something.

Rick

badbradley · « **Reply #18 on:** February 14, 2015, 09:30:57 am »

Jill, Islandgirl,
Healing vibes are so much appreciated. I hope the Harvoni is the silver bullet for both of you and everyone else on it. With the high success rates of these new meds it is likely for most everyone to clear. But for us that fail, there are more enemy's to this virus coming out of the woodwork!! We will be cured.

Rick
It really, really sucks that you were clear 6wks post treatment and 6mths post Detected! Again - that really, really sucks!!! I am disappointed with some aspects of my care. Like you my geno type wasn't accurately determined to be 1a or 1b. That is a red flag to me! There are other issues of concern regarding my treatment but I am not going to point fingers. It is what it is now and so back down to the bottom of the hill. I hope we don't have to wait for our livers to finish frying before treating again!! The insurance battle is worrying to me. But I remain optimistic and am preparing for the next round. Best of luck to you and to all!
Brad

Islandgirl · « **Reply #19 on:** February 14, 2015, 09:59:50 am »

Brad, I was scared to death about the insurance as I knew my co's co-pay was out of reach for me. However, my doc uses TLC, Rx as the specialty pharmacy and they helped me get a grant to help pay the co-pay from a company that works with people who have certain life threatening diseases - Hep C is on their list. A counselor told me that help can be found and that you should never have to pay the full price for these astronomically priced drugs. Try looking up tlcrxpharmacy.com and Patient Access Network Foundation. Evidently, there are other avenues of help out there, you just have to keep asking questions to find one that can/will work for you/your area of country/insurance/etc. Starting with questions to the specialty pharmacy seems to be key in finding help?

Rick, good luck with the specialist! I hope they find some answers and a good plan for you soon. Did you ask to be kept on a "cancellation list" for a sooner appointment? Just a thought.

Keep the faith and keep looking for that silver bullet, guys! Keep us posted and know that we're in your corner

...Islandgirl

Lynn K · « **Reply #20 on:** February 14, 2015, 02:02:06 pm »

And Giliad has the copay coupon for those who qualify pay no more than $5 a bottle is what I am paying per script of Harvoni

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Author Topic: Hep C returned (Read 20274 times)