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TOPIC: Update on treatment after relapse

Update on treatment after relapse 2 years 11 months ago #22997

  • coral
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I have just passed the 12 week mark on my second treatment (of 24 weeks) so I thought it was time to post an update. I relapsed after my first treatment at a time when many people were waiting for SVR results and knowing how much anxiety the thought of relapsing can cause I decided to keep things pretty low key. Now that some people have already commenced or are seeking re-treatment I think it's pretty important to get it out there.

My bio gives my history of being a slow responder and then a relapser. I had another consultation with Dr Freeman through GP2U and commenced my second treatment (Viekira Pak, Solvadi and Ribavirin) on 3/9/16. A week after I started this treatment my father's condition (prostate cancer) declined so I flew interstate and spent his final few weeks with him. It was a crazy time and my family were great in reminding me to take my medication. I did make myself sick once from trying to make up for missed tablets and getting dehydrated but Dr F helped to calm me down and get me back on the path.

Although my Dad didn't live long enough to see me cured I did receive an email from Dr F while I was at my Dad's 'wake' telling me that the results of my 3 week blood test showed that my liver functions (AST/ALT) had returned to normal already. We toasted that as well as my Dad! My 9 week results showed UNDETECTED so the bigger guns have worked well!!

I breezed through my first treatment with Sof/Led and Sof/Dac with minimal side effects. This second treatment has been a little tougher, probably due to the Ribavirin. I had major headaches initially but have found that I can minimise these if I make sure I drink enough water. I have had trouble sleeping and major dry skin and hair but although these are frustrating they're not unbearable.

I knew when the virus had gone during the first treatment, knew when it came back and know that it is gone again now. Relapsing is devastating but there are other options and mine is working well for me.

I've been keeping an eye on my friends here who are starting their next treatment or have to wait a little longer (looking at you Gaj) and look forward to hearing your results second time around. Thanks as always to Dr F and for everyone's support. Reading about the stories and the good news of others really does help.

So I have another 12 weeks to go. So far so good and hopefully it will be second time lucky. #flower
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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Update on treatment after relapse 2 years 11 months ago #22998

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Hi Coral,
Thanks for sharing. Wishing success for you and everyone who has relapsed. I can imagine the frustration of thinking you had this beat and then it comes back.
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 so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Update on treatment after relapse 2 years 11 months ago #22999

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Dear Coral, So happy to hear your labs are normal, and VL undetected at 9 weeks. The next 12 weeks should go by quickly. The headaches and insomnia seem to affect many, myself included...So sorry to hear about your father's illness and passing..Thank you for your post. Wishing you best of luck with your treatment...Hopes and prayers for you to reach SVR this time!..... :) #flower
HCV since 35-40yrs., GT 1a , Dx 2004; VL 4-5 mil, F2-3
Tx sof/led started 3/4/16
4wks VL <15
9 weeks VL UND, ; Alt-15,Ast-13
16 weeks VL UND Alt-20, Ast-22;
EOT 24 wks UND
SVR 4 UND
SVR 12 UND, Alt.15, Ast. 17
SVR 24 UND
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Update on treatment after relapse 2 years 11 months ago #23001

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Coral,

Sincere condolences on your father's passing. I'm so glad that you had the opportunity to celebrate your Undetected result with him.

Congratulations on reaching the halfway point in your treatment.

Good vibes, and support going your way!

Fitz
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
Last Edit: 2 years 11 months ago by fitz.
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Update on treatment after relapse 2 years 11 months ago #23002

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Hi Coral,

Congratilations on getting succesfully. halfway trough your treatment. After failing previous treatment I can relate to this, it's soo0 tough. But you seem soo determined :+1: :+1: :+1: With all my #love , best of luck with your difficult journey back to health !!
Sorry for your lost, be strong and don't loose youself into the pain...
Genotype 1b, VL before TX:325 000,ALT41, AST41, F2
2004 INT/Rib,stopped after 5 months, due to severe side effects
SOFOSBUVIR+LEDIPASVIR from India Hepcvir-L /generic Harvoni
beginning of treatment :12/07/2016, Feeling OK
4 weeks AST 22, ALT 23 VL undetected
8 weeks AST 29, ALT 22.VL undetected
3/10/2016 EOT
EOT + 4 Weeks, LFTs Normal, VL = UND
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Update on treatment after relapse 2 years 11 months ago #23003

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Good luck this time arounf Coral. I know it will be good news...... ;)
This email address is being protected from spambots. You need JavaScript enabled to view it.

Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
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Update on treatment after relapse 2 years 11 months ago #23005

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Hi Coral. I'm sorry to hear about your Dad, my deepest sympathy and condolences.

You are on the right track here, hopefully this will be your cure, but Dr. Freeman will see you through to a cure. That's the beauty of FixHepc. You are in control of your destiny. All due to this wonderful man James Freeman who is the dream maker. He will help you find what is available and that you need. One day I bet he gets an award from somewhere, maybe a Nobel prize once the greed factor abates and everyone realizes they were so wrong in this topic. It takes balls to do what he is doing. And it's the right thing to do, but it is standing up to Goliath.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
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Update on treatment after relapse 2 years 11 months ago #23008

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Thanks for your kind thoughts Beaches, Fara, Fitz and Murr. It means a lot.
Splitdog - thanks - you're on my watch list!
Greedfighter - thanks. I know, Dr Freeman is quite extraordinary. It's hard to know quite how to reward someone who gives you your life back. #flower
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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Update on treatment after relapse 2 years 11 months ago #23011

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Dear Coral
Thank you for sharing your treatment updates and congratulations on reaching halfway through and the riba. I send you condolences for your loss of your dad as a daddy's girl I feel deep pain over loss for a daughter of her father. My own died 11 years ago but it still feels like yesterday. Pat1 lost her dear dad during her tx it's somewhere in the maze of forum posts and I know it was tough. You are one strong woman facing up to retreating and family loss. The courage you take forward will be forever and that's something not many people have. I think people who have fought this illness hard are really amazing in many ways, learning to ride out bad news, rejoicing in good news, uplifting others, reading insightfully between the written or spoken words to the heart of the real person. I'm sure serious illness across all types has a profound effect on most people who have walked in our shoes and it's only good. Affirmation of the strength it takes is so important.
Sending love and huge splashes of happies on your halfway mark, and look forward to your updates Coral
Love from Ariel
Last night we enjoyed an amazing sunset which I managed to capture on my iPhone as I drove home from the hospital and I share it with you it's so inspiring #love
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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Update on treatment after relapse 2 years 11 months ago #23019

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Hi coral #love , Good to hear you're feeling positive and UND :+1:
Have been thinking of you and wishing you the best result this 2nd time round.
UND at 9 weeks? another 15 weeks of blitzing should see any stragglers off for good.

Was sad to read of the loss of your Dad, it's been a long haul turbulent time for you, keep strong, it should all be over with in a few months #flower #flower #flower

You know where I am if you need a listening ear x
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Update on treatment after relapse 2 years 11 months ago #23052

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Ariel and LG - thanks so much for your messages. What courageous, gorgeous women you are #love #love.
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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