Home › Forums › Main Forum › Patient Stories › Fitz starts REDEMPTION 3 Trial
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22 June 2016 at 6:52 am #19700
Hey I missed your last post yesterday.
“smashing ” results indeed !! wow what a drop!
so happy for you Fitz
Blood transfusion in 1992 – Diagnosed in 2007
Tx naive -G1b – F1
VL 2.270.000
ALT 40
Start tx June 4th/2016 with DAAs – Sof/Led from India
Bloods on two weeks of tx (June 18th)
AST 17 – ALT 10 – GGT 19
Virus UND
Bloods on six weeks of tx (July 16th)
AST 17 – ALT 8 – GGT 12
Virus UND
EOT on August 8th (did 9 weeks and 3 days)SVR 4 Virus UND (September 7th)
AST 13 – ALT 5SVR 14 Virus UND (November 12th)
22 June 2016 at 7:25 am #19704Awesome fitz!! I am so happy for you, wow that is an incredible drop. Great news!!
Contracted HCV 1980’s
Geno Type 1a
F3 ( doc says once treated I’ll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016Viral count – 3,471,080
4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)
8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)
11 week PCR RNA Qualitative bloods: September 26th 2016 – Undetected
December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!22 June 2016 at 7:38 am #19705yes it is daunting to think someone out there across the world has my best interests at heart, this doctor and this place is incredible, awesome, unbelievable, integrity strong, faithful and every other words I can think of and write! I feel so fortunate that I connected with a great person who shined a light on this place, I feel indebt d to him. If it wasn’t for him I would still be getting denial letters from my scummy insurance company and planning for a dismal end or declining life for sure. It’s all changed now! I hear cured instead of DENIED.
Thanks man.Thank you fitz, I am very enthusiastic about your news again, it makes me feel like I too will have the same results. As soon as my meds arrive I will start my own topic. I am sorry if I am interrupting the flow, this is your time! Thank you for sharing.
Contracted HCV 1980’s
Geno Type 1a
F3 ( doc says once treated I’ll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016Viral count – 3,471,080
4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)
8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)
11 week PCR RNA Qualitative bloods: September 26th 2016 – Undetected
December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!22 June 2016 at 8:12 am #19710Sven, you are welcome to post on this thread any time. I’m so glad this is where you chose to start sharing your story. You soldiered through incredible of pain and loss to get here. You have no dues left to pay, brother. You are home!
Meg, what a welcome and wonderful surprise your two week UND. results are! I’m still gobsmacked! WOW!!!
23 June 2016 at 7:27 pm #19821OK. Had an appointment with my Specialist this morning. Specialist wanted to go over recent test results with me, check vitals, weight and find out about side effects.
Vitals are mostly as before, with O2 being slightly higher (good). Blood pressure was a little high, but considering I drove over in rush hour traffic, BP was about what it usually is under those conditions. Weight has come down since last visit in (ca. 5 weeks ago). Have dropped 3+ lbs. (a little over 1.5 kilos). I wasn’t trying to loose weight, and will take the weight loss as a good sign, as I need to drop another 15 lbs (6.8 kg)
Asked about having HVC viral load assayed at 2 weeks. Specialist handed me a testing schedule (below), and the Specialist said I would need a Viral Load assay at 4 weeks, 12 weeks (EOT), and at 24 weeks to assess SVR.
Before saying goodbye, I handed Dr. Freeman’s most recent paper to my Specialist, with the outside packaging from my generic Sof/Led medication stapled to the back.
We chatted about Dr. Freeman’s paper and the generic DAA medication for a bit, and then I went up to the medical assistant’s desk to set up my next appointment, post 4 week test results.
My test schedule – standard branded Sof/Led protocol.
24 June 2016 at 6:16 am #19848Looks great and great drop in alt ast Friz, thanks for sharing. Is there any thing to report to us people getting ready to rock this virus that we may want to do or know?
Great job and thanks again man for sharing.
Contracted HCV 1980’s
Geno Type 1a
F3 ( doc says once treated I’ll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016Viral count – 3,471,080
4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)
8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)
11 week PCR RNA Qualitative bloods: September 26th 2016 – Undetected
December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!24 June 2016 at 7:59 am #19856Sven, the only advice I can give is not to wait. Don’t wait in line for a year as I did, before my heath insurance provider denied the Sof/Led treatment my physician had prescribed. Don’t wait for a single minute.
Have your test results ready, do your homework, consult a qualified physician (I spoke with my US specialist, with my US General Practitioner, and consulted with Dr. Freeman through GP2U). Take an eye level look at your options, get the finances sorted out, and get treatment. Now.
This virus is relentless. Once it takes hold, It never takes a break, never gives quarter, never shows mercy. It eats away at our livers, our health, our well being, and the very fabric of our lives. It scars our bodies, our minds, and our relationships. It steals our energy, and saps our creativity.
Don’t wait. Make a plan. Take action. Save your life. That is my advice.
Fitz
24 June 2016 at 9:24 am #19857Friz – I have made my diecision, meds are paid for and on the way they should be here early July. I had my opportunity and did not hesitate, GP2U and MonkMed is awesome, my doctor is impressed! I have had HCV destroy many things, I am the choosen 1 out of my family to live, the rest died all due to complications of HCV. So I am 100% on board.
Is there anything you can add about the treatment that may benefit us people coming soon? Most things I have heard is negotiable things head aches etc…but no real serious side issues unless they were present prior to treatment. So I’m just wondering, any advice for the rookies here?
Thanks man I appreciate your drive and pressing on attitude, I am waiting for your next tests to yell HURRAY!
Thx man.
Contracted HCV 1980’s
Geno Type 1a
F3 ( doc says once treated I’ll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016Viral count – 3,471,080
4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)
8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)
11 week PCR RNA Qualitative bloods: September 26th 2016 – Undetected
December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!24 June 2016 at 11:12 am #19861Hey Fitz
A belated congratulation on starting tx and thank you so much for all you do here on the forum. Although I’m not on here a lot these days I really enjoy reading your posts and lobbying. Em
24 June 2016 at 11:37 am #19866Sven wrote:Is there anything you can add about the treatment that may benefit us people coming soon? Most things I have heard is negotiable things head aches etc…but no real serious side issues unless they were present prior to treatment. So I’m just wondering, any advice for the rookies here?
Hey Sven,
I am not Fitz but finished treatment 2 weeks ago and the virus is undetectable in my body so I’ll share some perspective if you and Fitz don’t mind.
At start of treatment my VL was very high – over 6 million. The DAAs just ate those little bastards up.
I wondered why I had virtually no side effects and asked the doc today. She said it was because the Tx started working straight away, killing the virus.
Hopefully this will happen for you as well.
Headaches were minor and fleeting.
Constipation… ugh! Find what works for you to keep things moving so to speak
I think you just need to listen to your body, If you are like me you will have more energy very soon after starting Tx. Just stay with the things you normally do and within a few weeks you will find you are doing them better. When that happens I think that might be the time to start pushing your body more. For me it was swimming.
Just enjoy the ride and know you are giving yourself the best chance to get your life back.
Good luck, viking brother
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or soEOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby24 June 2016 at 12:29 pm #19876Sven wrote:So I’m just wondering, any advice for the rookies here?
You’re taking Sof/Led, right? Pretty easy, main thing is not to take antacids close to dose time as it needs acid in your stomach to work best. I took Sof/Dac which is a bit more fussy with foods and enzyme interactions, not a concern with Sof/Led.
Otherwise, normal healthy living is the recommendation. A good diet, exercise, a bit of sun and a positive outlook will get you there. Success rate of the treatment is amazingly high so don’t consider failure. I was so confident of attaining SVR12 I was about a week late actually getting the test!
M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia24 June 2016 at 12:52 pm #19878Good Advice Beaches and Sonix
In regard to antacids, if you take PPIs Sven, Dr Freeman advises to take them 4 hours after you’ve taken your SOF + LED. For more information see:
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂24 June 2016 at 6:59 pm #19883Sven wrote:Friz – I have made my diecision, meds are paid for and on the way they should be here early July. I had my opportunity and did not hesitate, GP2U and MonkMed is awesome, my doctor is impressed! I have had HCV destroy many things, I am the choosen 1 out of my family to live, the rest died all due to complications of HCV. So I am 100% on board.
Is there anything you can add about the treatment that may benefit us people coming soon? Most things I have heard is negotiable things head aches etc…but no real serious side issues unless they were present prior to treatment. So I’m just wondering, any advice for the rookies here?
Thanks man I appreciate your drive and pressing on attitude, I am waiting for your next tests to yell HURRAY!
Thx man.Sven,
As others who are much farther along than I in this process have pointed out, the side effects for Sof/Led are relatively minor. One thing I think is important to mention again is how vital the FixHepC support system is. This forum, and the people here who are fighting and beating this illness have become my anchors.
From my first contacts with Dr. James, and with Mike G to entering the REDEMPTION 3 Trial, through receiving medication, and immediately beginning treatment with generic DAA’s,the incredible people here have been right there, and believe me, I rely upon our group here for support, and information, and for inspiration.
When someone here experiences a milestone – EOT, Undetectable, or SVR, I share in their joy. When someone experiences a setback, I experience that heartbreak with them, and along with everyone else, support them when they grit their teeth, plant their feet and refuse to give up or give in.
I am learning to trust again, as much as I am capable of doing so in this short time. I am striving to be more patient with myself and with others, and to learn to keep my expectations at eye level with reality. After hiding this illness from others for decades, half living in denial and half believing it was probably terminal, trust and hope, a new set of expectations, and all of the possibilities that come with that can be a tall order sometimes.
Patience with the treatment itself is far more difficult than I thought it would be. I want the results, yesterday. I want this to be over, to put HCV in the rear view mirror and watch it disappear into nothing, forevermore, never to bee seen again. I want to put my foot on the accelerator – and make this happen faster. And then I remind myself it IS happening. This is actually happening. And then I take a deep breath in relief.
Please keep us posted.
Fitz
25 June 2016 at 6:34 am #19903Thanks, excellent post / reply. I could put your name in the addressed to: and sign it as me, we are that much a like in perspective of this illness, hiding it and thinking terminal like the rest of them and now wanting gone. I thank you so much, really, it helped.
Contracted HCV 1980’s
Geno Type 1a
F3 ( doc says once treated I’ll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016Viral count – 3,471,080
4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)
8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)
11 week PCR RNA Qualitative bloods: September 26th 2016 – Undetected
December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!28 June 2016 at 1:38 am #20011So, the latest. After finding a little spot on my nose that I didn’t like, I went in to see the dermatologist who took a quick look, said “well, you might have a little skin cancer there” and immediately took a chunk out of my nose with a scalpel for biopsy.
The dermatologist said not to loose any sleep over it. I worried a little, but really didn’t loose any sleep, and late last week I got a call that the biopsy was positive. It is a Basal Cell Carcinoma. After a misspent youth and decades in and out of the desert sun, I wasn’t terribly surprised. I then learned I was being referred to a MOHS surgeon.
Today I got a call from that specialist’s office, and I go in for MOHS micrograhpic surgery week next week. I’ve researched the surgery, and it really seems to be the best option for getting rid of that little bugger – but the damn thing is on the left side of my nose about 1/2″ inch back of the very tip of my nose above the nostril. Shit!
I was watching the Game of Thrones finale last night, surveying Jaime Lannister’s nose and thinking – “by Itself it isn’t really a very attractive nose, but on his face it looks pretty good and fits well…. that wouldn’t be too bad I guess”. I guess this is the stuff you think about when they’re about to go after a skin cancer on your nose.
Today the nurse assured me that the physician does any reconstruction which may be necessary in the same visit, and hopefully it won’t be much – but honestly – it will be what it will be.
I got curious about whether HCV had anything to do with this, and googled Basal Cell Carcinoma and Hepatitis C. Turns out it might: http://www.ncbi.nlm.nih.gov/pubmed/10756661
Another reason to get treated for HCV now, and not to wait.
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