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The second wait! 2 years 2 months ago #14406

  • sabrecat
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Hi all,

the last of 24 weeks worth of Sof/Dac taken on the weekend.
Had CT scan on liver and bloods done week before I saw specialist the Monday before EOT.
No HCC recurrence which is good news.
Blood tests okay but I seem to keep slightly higher ALT's.
Side effects during treatment minimal.
This week seemed to have had that energy rush I remember after the first week of treatment so long ago.
Specialist said I still needed to watch out, cancer wise - fatty intrusions etc ....., but with new energy I am chaffing at the bit to go to the gym and I am losing weight again.
Will have blood tests done in July for SVR result and see specialist in August.
Until then...... the WAIT!!! ....... previously for a cure, then for UND, and now for SVR. Go figure that one out.
Could have waited until I saw the specialist this month and gone on the freebie route through the PBS.
Got Nov, Dec 2015, and Jan, Feb and March in by using generics and would not have done it any other way.
Many thanks to Dr Freeman and the many others here that share their stories.
Have often thought that this forum is one of the few avenues that people living with this shit of a disease can use to have some time to feel appreciated and know that someone cares.
Reading the ups and downs of people on the way through to being rid of Hep C, has and will continue to mean a lot to me.

All the best to all of us and keep posting.

yours


J. :+1:
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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The second wait! 2 years 2 months ago #14407

  • Annasnow
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I am now on the wait for 12 weeks hopeful SVR after sof/led finished my 12 weeks.
trust we will be clear !
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The second wait! 2 years 2 months ago #14409

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You will!!
I just know it!
#woohoo!
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G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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The second wait! 2 years 2 months ago #14462

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Annasnow wrote:
I am now on the wait for 12 weeks hopeful SVR after sof/led finished my 12 weeks.
trust we will be clear !

Hi Anna and Mike,

I expect we all will be, but a small nasty part of me would be happy if there were some of the rotten virus about to have a second go at making its life miserable.

When I saw my specialist he did not seem to indicate there were hordes of people waiting to get treated!? Makes you hope the trickle turns into a stampede some time soon. No reason for it not to, at least here in AUS right now with the PBS paying.

And I also hope people thinking that they can wait have a second think about being treated. HepC is NOT worth having is my view no matter what.

Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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The second wait! 2 years 2 months ago #14464

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Hi Jeff, I was so burdened with it mentally, paranoid about it, it cramped my sense of viability in any dating situation and gave me many issues fog, fatigue, digestion, low immune system, etc To be free of it is a gift of a new life and a fresher mind clarity - the challenge is to find a simpler test to identify it and eradicate it. All the best, A
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The second wait! 2 years 2 months ago #14476

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Hear hear Annasnow I wait for SVR4 here with a severe case of PTSD I didn't expect as I have been UND since around Day 32 I am surprised at the magnitudinous effect on my subconscious by earlier peginf relapse and yep I agree I just want to stay UND
Lucky I have a fabulous GP and only two weeks to go til we pull my SVR 4 bloods. Once over that marker I rekn I will be in a very good headspace xxx thanks for this blog people
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
Last Edit: 2 years 2 months ago by Ariel.
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The second wait! 2 years 2 months ago #14478

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Maybe a little wacky backy would "take off the edge"....
I got into my "back medicine" during some low points and it helped...
Whatever it takes, they way I see it.
We have all suffered enough because of this crap
m
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G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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The second wait! 2 years 2 months ago #14484

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Thanks heaps Mike
Hard to empathise with this I know so ty
I'm glad that I am not the only blogger of this issue.
I set myself up to be type cast talking anxiety and PTSD, just anything like "drama queen" etc in others opinions of me but don't care this is real. It needs to be out there because there are a truck load of peginf relapse like me who may well be silently saying yup I get her totally.
I'm on double Valium am and pm plus something new, half a tab, for a few weeks.
PTSD is serious. And I don't want to set myself up anymore. Two more weeks it's not long then the wait for the results
I feel achieving SVR 4 for a peginf relapser is very significant
My sane voice is saying you will get your SVR
TY Again
Ariel
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
Last Edit: 2 years 2 months ago by Ariel.
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The second wait! 2 years 1 month ago #16185

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Me being among the people that need to be careful about a HCC recurrence, I had my first monthly AFP test done yesterday. Probably would have been due last Friday but seeing the date then was the 13th, I decided to let superstition rule the day and feel rather pleased with myself showing I could even out wait 'the wait' by 24 hours.

My G.P. says that if there is an indication of a HCC recurrence, the AFP levels will rise markedly. In my case, AFP levels have always been up prior to treatment as well due the the HCV activity.

I am not due for a Viral Load check until July, near post 12 weeks EOT - the only other one I wanted was in January and I figure I can wait until the large lady sings for the next one.

BUT:

a) if the AFP is up again? I seem to remember being there (HCC vs active HCV) before anyway. More probable HCC will be the worry.
b) if the AFP is normal, then is this a 'poor man's' (like Doc Freeman said in regard to LFT's) version of UND?

I really wanted to here the news from the fat lady. Does your head in this virus.

Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
Last Edit: 2 years 1 month ago by sabrecat.
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The second wait! 2 years 1 month ago #16189

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Me being among the people that need to be careful about a HCC recurrence

A significant proportion of HCC is AFP negative so AFP testing will miss it. You, being high risk (about 30%) should also have U/S or CT or MRI.

www.ncbi.nlm.nih.gov/pmc/articles/PMC1240033/

APF, US or Both?

The use of AFP measurement alone as a screening tool has been successful in detecting early treatable tumours in populations with a high prevalence and incidence of HCC such as Asia and Sub-Saharan Africa.28,40,41 However, the screening for HCC with AFP alone in populations with a lower incidence of HCC is associated with very low predictive values.42,43 Trials in China have shown that the combination of US and AFP is better than either alone for the screening of HBsAg positive subjects; otherwise, US alone is the method of choice since it is better than AFP.44,45

The superiority of US to AFP was further demonstrated in a 7-year prospective surveillance study to determine the optimal test for detection of early HCC. It studied both AFP and US and concluded that US examination was more accurate than AFP. Thirty-one cases of HCC were detected in 602 patients with chronic viral hepatitis; the positive predictive value (PPV) for AFP to detect HCC was only 12% or less for all AFP cut-off values, and the maximum joint sensitivity and specificity were approximately 65 and 90%, respectively. Abdominal US on the other hand identified all 31 cases of HCC. The PPV for US examinations to detect HCC was 78%, while the sensitivity and specificity were 100 and 98%, respectively.45
YMMV
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The second wait! 2 years 4 weeks ago #16415

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Had my AFP test and result okay.

Result appears to be in the category of 'not bad news' out of the three categories one can expect with HepC:

a) bad news
b) not bad news
c) good news

Appears though, that result c. is not available in this situation. Fair enough, I have long learnt to take what I can get and be happy.

Seeing the G.P. Tuesday about scans etc .....

Also booked in for 1st July for a colonoscopy. I am not that big on anatomy, but It's not anatomically possible they could have a look at the old liver while the camera is up there, is it ?????


Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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The second wait! 2 years 4 weeks ago #16418

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Also booked in for 1st July for a colonoscopy. I am not that big on anatomy, but It's not anatomically possible they could have a look at the old liver while the camera is up there, is it

If your doctor can see your liver it would mean he had accidentally pushed the scope through your bowel and perforated it. This is bad!
YMMV
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The second wait! 2 years 4 weeks ago #16472

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Ariel it's not clear to me whether you mean PTSD from the ordeal of Hep C or other PTSD being triggered?
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The second wait! 1 year 11 months ago #19297

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Got my own private Shit-O-Gram today when my G.P. called with the results of my VL test done 4th July: Unfortunately detected. So off to my specialist to plan what to do next.

Just as I noticed the increase in energy after commencement of and during treatment, something (feelings similar to those of old) was telling me about three weeks ago that I may get this result. 4th July is bang on 12 weeks (minus 1 day) as well so I expect it is a full on treatment failure.

I have spent some time thinking back about vague feelings of not being well and as of two weeks ago getting a cold that I can't seem to shake. This did not confirm to me that it would not work, but last week my daughter asked me why I sleep a lot. I told her it was the cold. Appears it was my old friend, bastard that he is.

Camera up my bum on 1st July went okay, VL test on 4th not good, still monitoring the liver - the same old place my wife did here Diagnostic Radiography student placement in (and got a Distinction which is not surprising given her experience overseas).

A good aspect is that I have experienced feeling normal for some months and my daughter appreciates that very much.

Yours with thanks to all and it looks like I have to migrate myself to re-treatment corner.

Yours


Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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The second wait! 1 year 11 months ago #19299

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Really sorry to hear your news sabrecat, another round to go, hope they have that vel sorted soon or whatever is best, and easiest.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan 40 down to 22 by 29/3/16- now down to 7, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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