Hep C Discussion Forum

Cinnamon Girl · Guru

RE: A Year Ago Things Really Change

patiently_waiting · Senior Member

A year ago I was planning on waiting another 1.5-2 years for treatment. I knew better stuff was coming, but didn't know for sure how good it would be. Now not only is there proof the new meds are much better, there's something available much sooner than I thought. :)

Isiscat2011 · Guru

Kay wrote:
Id love to see the YOUTUBE patient stories could someone post a link?

Hi Kay:

If you go to www.youtube.com and search "hep c treatment" a number of them will pop up. I was browsing to find an especially good one to link you to but came up short. Watching the videos feels a bit voyeuristic, and the lack of interactiveness is not my cup of tea, but that's just me.

There is one youtuber who went through hepc tx who caught my eye. She is a teacher by profession and her teaching skills come through in her videos. She has some good tips on diet and exercise and coping skills for hepc/liver patients. Her name is Karen Hoyt so if you type "Karen Hoyt and hep c" her videos will display. She also has a blog where she offers tips and recipes.

If you just want to see someone talk in person about their hep c tx, however, you can just type in "hepatitis c treatment" and if you are looking for a specific treatment drug experience you can add the name of that drug.

Groupergetter · Guru

A year ago, was complaining to my PCP about elevated ast/alt and had an unusually high afp. Really concerned me. Had high ammonia levels which were brought down by lactulose and reducing protein intake. Having twice failed interferon/Riba I had quit looking for "cures". My gastro doc had retired. I started seeing a new gastro in the practice and the first time I saw him he didn't know why I was there. He hadn't even looked at my chart. Not a happy camper. Had a follow-up visit 6 weeks later and the guy still didn't know my medical history. Was certain I wouldn't see him again. When I cancelled my next appointment the doc called me and asked why? I told him the truth, that he hadn't taken care of my medical needs. Think he felt bad, and thank God he made a referral to the Teaching Hospital in my area. A really good move. Saw the hepatologist there, and was scheduled for an MRI with contrast. The PA was really great. She has been involved in treating HepC patients for years. She was instrumental in getting my tx approved by my insurance.

Fast forward to March 3 when tx started, 12 weeks later EOT and UND biggrin Still not feeling the energy level I'd hoped for, only been a week since EOT. Between work (which has become very stressful due to major changes), care giving for an elderly mother, and trying to maintain a home, yard, vehicles, and boats, pretty much stay exhausted.

Still very thankful I've made it through treatment and hoping for the best. If I were a couple years older and Medicare eligible I would retire. Looking forward to the next fishing trip, but it's hard to get away. Glad to see so many here having positive, life changing improvements in their health. Thank God for new days.

Kay · Member

Id love to see the YOUTUBE patient stories could someone post a link?

OldenSlow · Senior Member

Good topic. Bumping it back up.

ucbgal · Senior Member

about a year ago today i was getting myself ready for a 2nd round of soc. thanks to this

loving/caring forum i started to relax a bit after watching those youtube patient stories!!!!

mallani advised me quite well & i didn't start until all my dental implants were completed.

i was readying myself for severe sx, buying every otc to combat them & in utter disbelief

that the fda would approve meds w/ such sx. i was so ready to fight the battle, i even

purposely gained weight to offset the losses i would encounter. my ast/alt were 199/122 & ferretin

was a wooping 2000!!!! i have thal beta minor. now 5mo. later UND, ast/alt 30/37 & ferretin

at 450 due to blood letting. sometimes it's a surreal feeling having achieved the hardest

battle of my life. also i was fortunate enough to have met & was guided by some wondrous

people on this forum. finally i was saying farewell to my loving coworkers of 29 years at my retirement party.

i had the time of my life dancing & reminiscing w/ special people the joys of empowering young minds.

those were the times of my life & soon i'll begin my next journey after svr.

sandy,ucbgal

Jaded · Senior Member

A year ago I was enjoying ignorant bliss. i had not been to a Dr since my Inteferon/Rib trial ended as a non-responder 17 years ago. Actually I did have one visit in '07 but was told because my liver tests were normal (more or less) I did not qualify for provincial funding for the then standard of treatment which was fine with me because I did not expect that Peg Inteferon with Rib would work for me anyways. A year ago I did not know that I had early stage cirrhosis and thought I could carry on at 58 years of age indefinitely until perhaps one day there might be a cure. Then in Dec I found out about Sovaldi and naively thought wow...I can now get this drug and I will be cured!. Little did I know it would not be that simple and that no...I cannot get this drug. Last year at this time I was enjoying life without a worry...now after having all my tests...all I do is worry and wait.

-- Edited by Jaded on Friday 16th of May 2014 07:17:38 AM

-- Edited by Jaded on Friday 16th of May 2014 07:19:02 AM

Isiscat2011 · Guru

OldenSlow wrote:
Hi Isiscat,
Yes, I am a patient of Kowdley's. He evaluated me for the trials and strongly urged me to wait out the DAA's, even given the cirrhosis. I am being treated by my local GI, but he stays in regular contact with Virginia Mason.
wayne

Kowdley is excellent. He is my doc too. I have heard other docs refer to him as the "Guru" of hepc.

There is a local ID doc who I met with recently to see if she would be willing to work with Kowdley as needed during my treatment since I don't live in Seattle. She told me she has known Kowdley for many years and that he has always been the research guy that all the other docs call on. She said HepC has been Kowdley's passion for as long as she can remember. I guess he is planning to rid the planet of the virus one patient at a time, and doing a pretty good job of it, I might add.

I met Dr. Kowdley almost 2 years ago and he told me the same thing. Wait for the new DAA's. He said he would cure me one day and I believe that day is getting close. I read that he recently got the first fibroscan machine in Washington!! I'll bet that made him happy. He also spoke at the April 2014 EASL conference in London.

I will probably be spending quite a bit of time in Seattle during tx because I want him to be my treating doc, but the ID doc is pretty terrific too. I have been fortunate to meet some really dedicated and kind physicians on this journey.

mallani · Guru

Hi SuziQ,

Exactly one year ago I received my SVR 12 results. I didn't really celebrate as I still felt like garbage and was trying to rebuild my body after 48 weeks of torture. As my ALT had spiked post-Rx, I was sure I had relapsed so the relief was almost painful.

I am very happy to see that Rx has become shorter and easier. I am grateful to Merck and my doctor, for giving an old cirrhotic a chance. Cheers.

OldenSlow · Senior Member

Isiscat2011 wrote:
Hi Olden Slow:
Is your tx doctor Kris Kowdley at Virginia Mason by any chance?

Hi Isiscat,

Yes, I am a patient of Kowdley's. He evaluated me for the trials and strongly urged me to wait out the DAA's, even given the cirrhosis. I am being treated by my local GI, but he stays in regular contact with Virginia Mason.

wayne

jimbob · Senior Member

First of all congratulations OldenSlow for completing tx. I too didn't realize you were this close. I look forward to you achieving SVR very soon. Completing this journey has to be a special feeling.

A year ago for me I was was 2 months from retiring on Aug.1st. I had waited 17 years since discovering I was infected, and had been following the progress of Sovaldi (like so many others before) in hopes it would be approved in Oct., 2013. I shared many of the same concerns as you Wayne in terms of insurance coverage,cost, availability, and especially sx. It took me several more months to start as I had to tweak my insurance for better rx coverage, but finally got started.

Wayne, we are both very fortunate to have had this opportunity.

The thing is SuziQ, next year this board will most likely look very differently again with the introduction of the one pill combo.

-- Edited by jimbob on Thursday 15th of May 2014 01:55:12 PM

-- Edited by jimbob on Thursday 15th of May 2014 01:56:33 PM

-- Edited by jimbob on Thursday 15th of May 2014 01:58:11 PM

-- Edited by jimbob on Thursday 15th of May 2014 02:18:28 PM

Isiscat2011 · Guru

Hi Olden Slow:

Is your tx doctor Kris Kowdley at Virginia Mason by any chance?

Omnamahshivaya · Senior Member

Love what you wrote OldenSlow! So happy for you!

OldenSlow · Senior Member

One year ago I had finished up my various medical appointments (I do the biannual scan/labs in the spring and fall) and was preparing to leave town for an extended trip. I had spent several months checking in with the clinical trial center in Seattle, where I had been placed on a wait list along with who knows how many others. I knew the prior January that my chances were slim. There was little going on for cirrhotics and I was hard-pressed to meet their minimum platelet standards, anyway.

My hope was that all the talk about the new DAA's hitting the market by early '14 was more than just talk, and that I could nurse the liver along well enough to get safely to that point. I was concerned about both the timetable and affordability. No one knew squat about what the cost would be, insurance approvals, treatment guidelines or anything else. All of the indicators were there, but it remained a pie in the sky. I resolved to take decent care of myself and hope for the best.

Fast forward one year and I'm wrapping up treatment. Turns out the drugs were approved on schedule, along with a handy dandy off-label option that saved by butt. Insurance proved to be a non-issue in my case and (like everyone else) I've responded well to the meds. There remain the post-EOT checkpoints to safely navigate, but I am optimistic about that.

I'm a lucky boy. A little riba-addled, perhaps, but most fortunate to have had things fall into place as they have. Would that everyone could have it as easily as it's been for me.

Good brain food, SuzieQ. Thanks for bringing it up. ;)

wayne

TazKat · Senior Member

Amen to all of the comments..

Tig · Admin

One year ago I was preparing myself to start treatment, May 23rd to be exact. I had the talk with my doc about the expected nasty side effects and had started a prophylactic anti depressant to avoid one of them. I was waiting to hear back from my specialty pharmacy. They were sending a Tx nurse to instruct me on proper injection technique. I agree Scruffy that we're seeing an entirely new group here on the forum and the conversation has gone from dark and troubling to who can achieve UND the fastest and with the fewest (if any) side effects. Susan, the advances in care are changing so rapidly, I have to wonder what kind of replies your question will see in another year? I'm anxious to find out!

Tig

Scruffy · Guru

Hi Suziq

Let see, a year ago I was just starting treatment. Back just a matter of months these forums were a lot different in tone. Peoples posts were mostly about side effects. Who had bad rashes,anemia and depression. Still have some of that in the posts but not nearly as much. Bad thing was you could almost tell by the posts who would have a good chance at completing treatment and who needed to muster a little more fight. You almost wished you could fight for them. Some had the fight but there Doctors decided other wise. Its a good deal brighter now biggrin biggrin with the new meds. There seems to be more undetectable than complaints and it will only get better. Three transfusions and procrit since week seven but two more days of pills and for me its over. Its great seeing 12 week treatments instead of 48. Things here have a "up beat" feel now.

suziq · Senior Member

I was reading the many posts today and thinking of how it was just a year ago. I had just gotten my first biopsy since 2000 and was denied a Gilead trial because I had cirrhosis. There were a few posts concerning trials, but not many. Most related to the old SOC.

Today, the posts are full of people starting treatment, looking for financial assistance or doctors that will prescribe new meds, updating progress on the new meds or completing treatment successfully. I am 18 weeks post treatment (SVR12) and looking forward to my 24 week final check on July 1.The news is full of updates on various meds awaiting FDA approval or when the next meds will be approved. Most trials are Phase III and results are wonderful. Cirrhosis and age are no longer barriers to trials or treatment. TV is bringing Hep C out of the shadows as it once did HIV. Such a wonderful time for most of us. And, hopefully, treatment will become available to the people of the many countries where it is not yet available.

Where were you a year ago--in your hopes and fears???

SuziQ

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