Home Forums Main Forum Patient Stories Relapse Corner – Next Steps Update on treatment after relapse

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  • #24589
    Avatar photocoral
    • Guardian Angel
    • ★★★★★
    @coral

    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

    #24590
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    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

    #24591
    Avatar photoFara
    • Topics: 1
    • Replies: 82
    • Total: 83
    • Guardian Angel
    • ★★★★★
    @fara

    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

    #24593
    Avatar photofitz
    • Guardian Angel
    • ★★★★★
    @fitz

    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

    #24594
    Avatar photoMurr
    • Topics: 4
    • Replies: 18
    • Total: 22
    • Treatment Warrior
    • ★★★
    @murr

    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

    #24595
    Avatar photosplitdog
    • Guardian Angel
    • ★★★★★
    @splitdog

    Good luck this time arounf Coral. I know it will be good news…… ;)


    splitdog@roadrunner.com

    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

    #24597
    Avatar photoGreedfighter
    • Guardian Angel
    • ★★★★★
    @greedfighter

    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.

    #24601
    Avatar photocoral
    • Guardian Angel
    • ★★★★★
    @coral

    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

    #24605
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    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
    IMG_0994.JPG

    #24613
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    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

    #24645
    Avatar photocoral
    • Guardian Angel
    • ★★★★★
    @coral

    Ariel and LG – thanks so much for your messages. What courageous, gorgeous women you are #love #love.

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