The second wait!

This topic has 56 replies, 17 voices, and was last updated 7 years, 6 months ago by coral.

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21 September 2016 at 4:19 am #23168
MtGoat
- Topics: 5
- Replies: 74
- Total: 79
- Recovery Champion
@mtgoat
Jeff, Glad to hear you are back in the saddle. You’ve been through a lot, but you,re soldiering on so, congratulations for that. I’ll be hoping for great results for you.

Cheers
3a for 35 years
Dx 1996, tx naive, ALT 46 AST 38 VL 140K
Started Sof/Dac 1/23/16
Kingswood generics AUS
2/19/16 4wk lab HCV Undetected ALT 14 AST 19
EOT 6/1/2016
TX was 18 wks (w/some 1/2 doses & 1 skip dose after 11 wks
while waiting for +6 wks to arrive)
SVR4 6/30/16
SVR12
SVR24 Redeemed
21 September 2016 at 5:08 am #23170
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
Hey guys! I totally agree with sabrecat (so happy you are nearly underway again) and Gaj. Even though it wasn’t our time I share in the joy of the SVRs both for the individuals and for the broader success of the new treatments. I’ve been a bit quieter now about talking about the relapse as I know it can spook already anxious people and I haven’t posted about the new treatment that I started a couple of weeks ago because I have other things happening in my life at the moment. But believe me I LOVE reading about the successes. We’ll get there – we’re just doing the marathon rather than the sprint….
21 September 2016 at 6:19 am #23172
sabrecat
- Topics: 2
- Replies: 258
- Total: 260
- Guardian Angel
@sabrecat
beaches wrote:

May force be with you m8
I always feel a bit insensitive when celebrating on the forum, knowing that I could easily be in your shoes.
Genotype 3 is a bugger to treat but thankfully the research is moving along quickly.
Hopefully you have got it this time

The good outcome posts keep my hopes up, and while it is not particularly ‘I’ that is winning the battle right now, it is ‘we’, and that makes me feel good too.

Jeff
21 September 2016 at 6:22 am #23173
sabrecat
- Topics: 2
- Replies: 258
- Total: 260
- Guardian Angel
@sabrecat
Hi splitdog,

I will pm you the details.

Jeff
21 September 2016 at 11:49 am #23181
LondonGirl
- Topics: 16
- Replies: 1,348
- Total: 1,364
- Guardian Angel
@londongirl
We’re all with you in spirit Sabrecat, Gaj, SD and Coral.
My very best wishes go with you
LG

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
20 December 2016 at 2:55 am #24748
sabrecat
- Topics: 2
- Replies: 258
- Total: 260
- Guardian Angel
@sabrecat
Just an update that may make the outlook better for second treaters:

Started again beginning of October 2016.

By 4 weeks into treatment: LFTS down but still bit elevated, AFP normal, fatigue a bit down but general ‘don’t feel that good feeling’, moody ++ and lack of strength which was not there first time around on treatment – Ribavirin side effects? Results of detection test not available – big deal, I can wait.

By around 8 weeks: LFTS all normal, anything Ribavirin can affect blood wise is affected. AFP normal and now I am UND. Insomnia which was not there first time around has ceased; less feeling crook in the gut and the head feeling like I had one too many swampies last night has diminished as well.

Latest CT scan a work (wait) in progress.

Apart from feeling a bit off, good to be back in the saddle desexing Hep C virons; the least I can do for my loyal little friends. Maybe having the chance to breed a few more of them to neuter is some consolation too.

And many thanks for the posters, both those who have to have a second try, and these who get better first time around showing it ca be done.

And also the medicos who have stood by their patients for many years, often having to silently witness them pissing Interferon + Ribavirin into the wind for no good end. Hope the DAA’s have come as a welcome and well deserved relief.

And a big thanks for for Dr Freeman et. al. who first gave me (and many others) a taste of the good life back in late 2015. This was the first time I defeated the ‘have to wait’ tyranny, and fuck all mighty, that may me feel GOOD!

Yours all,

Jeff
20 December 2016 at 4:02 am #24749
beaches
- Topics: 10
- Replies: 750
- Total: 760
- Guardian Angel
@beaches
This sounds like good news. May 2017 be your year

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
20 December 2016 at 9:07 am #24762
fitz
- Topics: 9
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- Total: 499
- Guardian Angel
@fitz
beaches wrote:

This sounds like good news. May 2017 be your year

Amen!
21 December 2016 at 5:35 pm #24783
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
Hi Sabrecat. Great to see your update and so so happy to see the good result. I’ve had similar side effects and also put it down to the Ribavirin. I forgive it though because it’s doing a great job. It’s great to be able to show people who have relapsed that there are more options and the longer path still leads to the destination
5 January 2017 at 10:02 am #24912
Ariel
- Topics: 3
- Replies: 1,060
- Total: 1,063
- Guardian Angel
@ariel
Happy New Year Sabrecat
Great to log in and read hopeful news from your world. Sounds like this time things are going to nuke the little buggers. Ribas no fun but hey, whatever works is good! I hope next time I login I read your EOT and wish you success and smooth sailing to the finish. sending happies from boiling hot Aussie Summer
Ariel
30 January 2017 at 3:14 pm #25163
sabrecat
- Topics: 2
- Replies: 258
- Total: 260
- Guardian Angel
@sabrecat
Hi all,

just another update while waiting around being retreated.

Had blood tests done December 2016 and all is okay barring any red blood cells still standing.

Had CT scan which I found out just before Christmas showed lesions (metastases?) near the liver – bit of a surprise and certainly a bit of a worry. Not a good Christmas at all.

So off to get a referral to the specilaist that took care of my HCC 4 years ago. Had an appointment scheduled but was advised before the appointment was due (on my birthday if you can believe it) that the lesions on their review were not metastases or anything really nasty.

Happy birthday though I think at times my head is being done in.

Still feel like shit at times with the Riba and went on two weeks leave around my birthday but caught this cough type cold thing which is still hanging around. Other people I know at work and someone at home have it as well, so I can’t finger this on the Riba. Coming up to finishing 5 months out of six re-treatment on DAAs.

Do not seem to hear much about the concern about DAA treatment reactivating previous HCCs now a days. Was this something of a flash in the pan or still something I can fill in the time worrying about while I wait?

Yours

Jeff
1 February 2017 at 10:45 am #25173
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
Hi Sabrecat,

Bad Christmas news followed by good birthday news – your head must have been spinning. I’m just a little ahead of you with 2 weeks to go on this re- treatment. Like you I won’t be sorry to see the last of those little blue Riba pills but I guess they have to be mean to win the war.

I can’t help you with the DAA – HCC query but I can do these last weeks with you my friend. Finally we’ll be able to concentrate on all of the other bits that are breaking down!!
7 February 2017 at 12:12 pm #25238
LondonGirl
- Topics: 16
- Replies: 1,348
- Total: 1,364
- Guardian Angel
@londongirl
With you both in spirit and spurring you on Coral and Sabrecat .

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
9 February 2017 at 1:50 am #25260
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
Hi LG,

Thanks so much for your thoughts and all of your support in the past. It meant more than you can know. I am both happy and anxious as I come to the end of my second treatment as I then move into the waiting/watching phase.

I have posted on your good news site because it’s worthy of it’s own major congratulations!! xx
15 February 2017 at 1:15 pm #25315
LondonGirl
- Topics: 16
- Replies: 1,348
- Total: 1,364
- Guardian Angel
@londongirl
Thanks Coral, Watching and waiting for your results. Feeling very positive on your behalf
The post tx waiting did seem to drag a bit for me, kept busy for most of it, suggest book some pleasurable activities for tge last 2 weeks

Here for you in spirit, please feel free to email if you feel inclined, much LG

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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