the patient poodle

This topic has 90 replies, 23 voices, and was last updated 8 years, 5 months ago by CC2B.

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29 November 2015 at 6:40 am #4803
Chejai
- Topics: 5
- Replies: 267
- Total: 272
- Guardian Angel
@chejai
Congratulations to both Jill and Mike! WW! this is so exciting reading through these stories and seeing how quickly improvements show so early in tx.
BTW, curious Mike, you mentioned frequent ‘peeing at night’ – I have had this for a while now. Dr has no explanation, like so many of my symptoms. Have others experienced this as well re their HCV?

Anyway, great news for you and many others here on the site, feeling impatient to start…

QLD Australia ‚òÄÔ∏è
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50H
29 November 2015 at 7:13 am #4805
Gaj
- Topics: 29
- Replies: 1,402
- Total: 1,431
- Guardian Angel
@gaj
Hi Chejai,

Yes, my experience is the same as Mike’s, only once a night now.
And at the risk of adding too much information, my pee has been quite dark for a long time no matter how much water I drank but I noticed last Sunday after 4 days treatment that it was much lighter and it has remained so all this week.

G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
29 November 2015 at 5:26 pm #4825
mgalbrai
- Topics: 28
- Replies: 1,298
- Total: 1,326
- Guardian Angel
@mgalbrai
Hi All,
As I have said before, “Normal” is no longer just a cycle on the washing machine for many of us. This is a learning experience for me. I have been sick all my adult life and just got my first blood tests ever that came back completely normal.
I like normal. It feels abnormal, but in a very good way.
Mike

Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtx

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
19 December 2015 at 4:14 pm #6717
poodle
- Topics: 4
- Replies: 105
- Total: 109
- Guardian Angel
@poodle
Hi I just had a thought which i would like some advice on. I have based my 12 week course of sof /led on a fibroscan I had taken 12 months ago. It was just before xmas this time 1 year ago. The test came with the result of 1/2 fibrosis. 4 years earlier I had my first ever fibroscan which was taken at a different hospital , it came back as a 2/3 fibrosis. During the time between I took many products which i believe reduced the fibrosis backwards to the 1/2 reading 12 months ago. My question is, should I have had a test more recently to better determine my treatment duration? Could I have advanced in the last12 months to more serious scarring ? If so i would need 24 weeks. Iam currently 2 months through treatment with one month to go. Should i have a new fibroscan soon so if I need to order another 12 weeks I can still line it up. Would anybody know if its possible to go from a 2 reading to a 3 or 4 reading in 12 months ? Thanks

Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 … waiting for svr 24
I now have SVR 36 weeks.
20 December 2015 at 2:37 pm #6825
dointime
- Topics: 29
- Replies: 325
- Total: 354
- Guardian Angel
@dointime
Yes, it is possible, though unlikely. Progression of hepC liver damage is not linear. It is known that sometimes for no reason the damage just accelerates, especially if you get into the 60+ age group.

At the same time, the fibroscan is known to be more accurate at either end of the scale than in the middle. You don’t give the actual fibroscan numbers you got but it is possible to get a variance of about 2 on an annual fibroscan reading without your level of fibrosis really changing. At the time of the scans it is unlikely that you had cirrhosis though. The machine would have detected that.

So I think it is up to you if you want to do another fibroscan, mainly for your own peace of mind.

dt
20 December 2015 at 4:44 pm #6829
poodle
- Topics: 4
- Replies: 105
- Total: 109
- Guardian Angel
@poodle
Thanks DT good on you for spending the time to reply. Occasionally i get worried that I didnt take the time to do it all exactly to recipe. I was so keen to buy before the club was at risk of being closed. So I just went with my year old fibroscan. I will consider the possibility of having a new fibroscan. However it might take too long to get an appointment. I suppose there are going to be alot of new people getting in line, with the new listing comes a new kind of waiting. Thankyou Jill

Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 … waiting for svr 24
I now have SVR 36 weeks.
21 December 2015 at 3:13 pm #6919
dointime
- Topics: 29
- Replies: 325
- Total: 354
- Guardian Angel
@dointime
Hi Jill,

If you can’t get a fibroscan in time there is an alternative based on a blood test. I think I saw details of that somewhere on this site and a comparison of the 2 kinds of diagnostics.

IMO you can never be too careful when dealing with the HCV virus. Even in these days of better drugs, a cure is not a given. So getting all your ducks lined up in a row is the way to go,

dt
21 December 2015 at 3:22 pm #6920
poodle
- Topics: 4
- Replies: 105
- Total: 109
- Guardian Angel
@poodle
HI DT I contacted hospital this morning in melbourne. Was told the clinic is closed for the year. If I wanted to have a fibroscan next year I would have to get at the back of the queue which is currently 3 months long ! So looks like ive blown that option. The blood test you speak of I think once you have begun the treatment you cant do that test for some reason I forget right now. Pretty sure James has posted about it. Now Iam wondering do I buy more sof/led just in case or just cross the fingers. In my conversation with dr at melb hospital he reckons it would be unlikely to progress to F4 in one year.

Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 … waiting for svr 24
I now have SVR 36 weeks.
21 December 2015 at 3:33 pm #6926
Gaj
- Topics: 29
- Replies: 1,402
- Total: 1,431
- Guardian Angel
@gaj
Hi poodle,

Dr James’ post.

http://fixhepc.com/forum/experts-corner/398-hepascores-only-work-pre-treatment.html

G

G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
21 December 2015 at 3:36 pm #6928
dointime
- Topics: 29
- Replies: 325
- Total: 354
- Guardian Angel
@dointime
Oh I forgot about that with the blood test. Sorry. However my doc told me that any liver panel blood test would show signs if my liver were to be going into cirrhosis. I am 65 so I have been paranoid every year about my liver suddenly deteriorating before the meds arrived. So if you had any blood test in the last year after your scan and there were no significant changes, I think you should be fine.

dt
21 December 2015 at 3:40 pm #6930
mgalbrai
- Topics: 28
- Replies: 1,298
- Total: 1,326
- Guardian Angel
@mgalbrai
Its called a Fibrosure test in the U.S.
Just a blood test. It was accurate in my case, as I had a biopsy as well.
Mike

Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtx

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
21 December 2015 at 3:51 pm #6933
poodle
- Topics: 4
- Replies: 105
- Total: 109
- Guardian Angel
@poodle
Thanks everyone Dt My blood work is not very bad in terms of levels not being very high at all. I think iam doing ok even though ive had it 35 years age 53. load just before treatment was 630,000.

Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 … waiting for svr 24
I now have SVR 36 weeks.
21 December 2015 at 4:03 pm #6937
Gaj
- Topics: 29
- Replies: 1,402
- Total: 1,431
- Guardian Angel
@gaj
dointime wrote:

Oh I forgot about that with the blood test. Sorry. However my doc told me that any liver panel blood test would show signs if my liver were to be going into cirrhosis. I am 65 so I have been paranoid every year about my liver suddenly deteriorating before the meds arrived. So if you had any blood test in the last year after your scan and there were no significant changes, I think you should be fine.

dt

Hi dt,

While not an expert that would fit with my experience. As I was seen as high risk I was checked via ultrasounds regularly and was also checked & considered F3 based on fibroscans. My LFTs which had been stable and only slightly high after (failed) treatment suddenly escalated leading to further investigations which resulted in a resection which confirmed me as F4 due to more scarring than expected.

G

G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
21 December 2015 at 4:14 pm #6940
poodle
- Topics: 4
- Replies: 105
- Total: 109
- Guardian Angel
@poodle
Thanks Gaj for posting, so if you were me , because my fibroscan is one year old….would you just buy extra and double the treatment duration to be sure. Thing is Ive only got 28 days to go before I finish my 12 weeks and would need to buy very soon to make sure Iam continuous. Thank You opinions valued. JILL

Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 … waiting for svr 24
I now have SVR 36 weeks.
21 December 2015 at 4:17 pm #6941
mgalbrai
- Topics: 28
- Replies: 1,298
- Total: 1,326
- Guardian Angel
@mgalbrai
Hi Jill,
Check my labs below, I think we are in a similar situation

Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtx

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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