I haven't been online much since end Jan and even now when I see a number of topics which are critical for me - I find it difficult to get my head around the content. So frustrating.
Since February I have been exposed to an unusually difficult situation, experiencing unmitigated distress & indecision - I don't know how it will end. Im not asking for comment - just explaining to those who have so kindly tried contacting me - why I have been unavailable ie Cindi, Paul, Gaj, LondonGirl, Tina,Tim, Doc, Life and others ...thank you.. I have simply not been able to talk to anyone. When I hear a kind voice it brings me undone - and I must keep working and attending to matters at hand.
When necessary, I have usually observed dietary considerations around insulin resistance, knowing its value to treatment success. Yet during the current stress I have too often indulged a sugar craving. Ive recently noticed symptoms not felt for some time - some may be DAAs side effects but most resemble pre-treatment symptoms & were I not still on treatment - I would suspect the virus has resurged. I now have concerns about later relapse. I complete my 24 week treatment in two weeks but would ideally like to sustain a better diet & take the meds for at least another month.
My specialist says no, that Im simply afraid. I think his view might be - that if the treatment was going to succeed, it would already have done so. I will concede the "afraid" part and may be hyper sensitive to these symptoms. or not. I do get it. Finishing treatment is like letting go of the dice in an all time crap shoot.
In 2010-2012 for two entire years waiting for treatment; I never touched salt, sugar, gluten, dairy - ate protein, complex carbs, good fats. After a coma, progressive ascites and varices, labelled palliative - my diet "relaxed". However, after starting the treatment I should have sustained an optimal diet. For years, I too observed the cohort to which Price attributes such good nutritional advice. Though being so HCV advanced - it seems extending treatment is not recommended.
Cancer Surveillance:. I have previously had liver lesions, only one in Section 6 at 11mm (small), was finally monitored by a Surgeon as an HCC concern. I was keen to start treatment - mythology advocates that HCC is driven by the inflammation caused by HCV - therefore the sooner HCV is "cured" and inflammation reduced - the better one's prognosis for current or recurrent HCC. It is a worry to find this position may be compromised by the very drugs (DAAs) - being used to achieve this outcome. Interestingly, when I started treatment my 11mm "lesion" had been stable for 3 months - however; in January, two months after starting treatment my scan found another area of interest, a small 7mm nodule laterally in segment 7.
Alpha FetoProtein AFP : I had started to relax when the first lesion seemed stable, particularly as my AFP also lowered. However one should be aware that AFP results frequently present both false negatives or positives. Much like the PSA results our gentlemen get for prostate surveillance - the most reliable indicator is a result which moves slowly and surely. Ad hoc variations are less reliable. However, particularly with collateral data; an AFP is still of value - and I will have an AFP done. I am also now due for next MRI but may wait a little longer - aside from the apprehension - I will fix timing around treatment cessation.
Hepatitis B: I have not yet got my head around Dr James' account of the Hep B sero-conversion/antibody differentiation; however I may also need to have a Hep B panel done with my next bloods. I was diagnosed with chronic Hep B in approx 1972 and as far as I knew remained HBV positive for many years. In more recent years, I was told that I was no longer positive. Meanwhile I had been (1990s) diagnosed with HCV. In the light of Dr James' post, Im not certain where I stand for HBV relapse - and I need to confirm my status.
Cerebral Aneurysm In passing - I also have a Cerebral Aneurysm - it is small and therefore not to be overly concerned about - except at routine MRI. Since the HCV complications - it is a little more risky. Getting to hospital for a ruptured aneurysm is not a best call with HCV low platelets between 50-70. Dr James explains in one of his posts the progression of bloods normalising with treatment, the platelets usually do so last - I was pleased to see that because I noticed mine were still low. Many people get small brain aneurysms as they age, and we would have less people unnecessarily worrying about them if todays technology wasn't so readily finding them. A poor prognosis is usually indicated by family history.
Apart from work; Ive spent so much time in isolation - I finally decided it was time to make an effort to communicate with my forum peers. Sorry - I misplaced the "stop" button. Im just checking in really to stay in touch and appreciate the gift we have in this forum - the caring members and the information provided so generously by Dr James and other knowledgeable contributers.
Take Care Archer
Fem. Gen 1a.18.4 kPa. IL28b - CT. Cirrhosis 4B/c. MELD 11. Portal Hypertension. Ascites. Varices. (Gr.3). post surgical Coma 2011- Tx denied. 15/09 - INR 1.2 platelets 58 (150-450) albumin 32 (35-50) bilirubin 40 (2-20) ALT 183 (0-45) AST 281(0-41) GGT 39(0-45). Liver lesions AFP 16 <8.
Welcome back. As always you raise a number of important points most of which are far outside my experience but there are a couple of comments I would make.
For your concerns about your recent symptoms and the impact of your diet, I'm also at 22 and a bit weeks Tx and also have experienced some increases in aches, twinges and itching recently. I suspect it is probably just the length of time on the meds, either physically or emotionally, rather than the virus regrouping because as you say being on treatment effectively knocks any viral activity out. From a dietary perspective even if sometimes we haven't been fully adherent up till now (goodness I like pizza now that I can digest it! )* I suspect that with undetectable viral activity in our blood, the virus is unable to manipulate any excess sugar to allow massive replication. I think the important thing now is to get our dietary sugar under control prior to finishing treatment and then strictly maintain it until we acheive SVR.
As far as the recent reports around HCCs and Tx goes, they are very preliminary at the moment and may or may not point to some concerns. But for us I believe that it's too late to be crying over any potentially spilt milk so to speak and we should just take it as an advisory to keep a careful eye and regular check with scans and tests. I would recommend to keep to your MRI schedule rather than delaying and while AFP is only a rough indicator, it is a quick, cheap and mostly painless way to monitor for those gradual increases or sudden jumps that may indicate a need for a closer look.
May I also say it's good to hear from you after so long.
*don't worry, the pizza is only an occasional treat even if I dream of it regularly.
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
Take Gaj's advise, he always makes sense.
Try to not to worry too much. Sounds like your symptoms are shared with others, so all is probably still ok.
It's ok about "hiding out" I've done that myself in the past, the world & reality can be a scary thing.
....I'm still just a phone call away, remember that.
Love Cindi xo
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
Hey guys FWIW I finished tx about 7 weeks ago and still have aches and feelings of inflammation around my liver even though I came up as UND at SVR4. Those symptoms never really went away completely. I have a feeling for those of us with damaged livers, even when we kill the virus our livers are still in rough shape and we are likely to feel some discomfort until it has had a chance to heal.
HCV 35 yrs G1a F3 Tx naive
started Lesovir-C 15/12/2015
pre tx: VL 5,250,000 ALT 374 AST 208
4 weeks tx ALT 29/ AST 33. VL < 12 UI/mL
8 weeks tx ALT 29/ AST 34. VL UND
4 weeks after tx UND. SVR4. ALT 24/AST 18
Hey Kenbasman, sorry to hear you're having continuing issues. What you and others are saying here though makes sense. Keep on keepin' on ✌
GT1a; Got it some time in the 70's; Diagnosed @1976
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
Its totally ok to take the time to hide out - I think I would run the risk of making myself really unhappy if I dont have my alone time. That said I am ever so grateful to my friends and family who tap me on the shoulder to remind me that they miss me and my crass jokes
I think Gaj and Cindi hit the nail on the head in their post's to you.
Sending you love Archer, you are so strong. I wish you better heath, and continued determination as you clearly have with your challenges. I understand about what I call 'crawling under a rock' and chilling away from writing, I do that sometimes too Thinking of you, from Ariel.
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
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
Dear Archer, Lovely to hear from you. I so understand the hiding away thing.
As I have posted elsewhere, I do think the length of time going through all 'this stuff' can wear us down and cause retreat. We'd have to be made of steel for it not to, especially for those like you with other health concerns.
Even at F1/2 I experience 'liver ache' and now dry skin which has come back 16 weeks into tx, so it could well be the time on meds.
I am thinking of you and sending big healing wishes and
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