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Post Info TOPIC: Hello, new here - found out about Hep whilst on chemo


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RE: Hello, new here - found out about Hep whilst on chemo
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Ash, the water thing CAN be a challenge lol.  I found the gallon jug to be a bit intimidating for me, so i used my Nalgene bottles,  a pretty glass and a timer.  Goofy I know, but it works for me!  Also I saw that fizzy water can be absorbed just as well so I am going to add some to my day, in a pretty wine glass with fruit garnish.  Whatever works I guess!  Upside, my skin has never looked better!

 

Cheering you on in spirit



__________________

Age 62

Diagnosed 2007

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L

GGT 76 U/L

FIBRO BUN 9 mg/dL

FIBRO PT INDEX 103 %

FIBRO METAVIR CLASS F2

INFLA PT SCORE 0.73

INFLA METAVIR CLASS A1/A2

 



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Sounds like you've got this, Ash.  A tip for downing the necessary water is to add a little flavor.  I used lemon, small amounts of powdered electrolytes in various flavors (to replenish what I was flushing), or any other flavorful add in.  You just don't want to turn it into a gallon of pop! Nothing better than good clean water.

 I also went the extra step to run the water through a purifier.  Whatever works for you, you will find that it helps.



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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Thank you Tig! I have found out with some relief that US gallon (under 4 litres) is smaller than UK gallon (4.5 litres), so I am not too far off the aim of 1 gallon per day after all!  I have a large mug measuring 370 ml so the aim was to drink 15 of those per day to reach one gallon, but of course I never managed this.  I manage 8 of those 370 ml mugs, so just under 3 litres.  If I can get to 10 if these I will be up to the US gallon I think.

Canuck - thank you for all the info - the appointment was with a liver nurse who gave me the meds for my second month, and booked appt for the final lot, this will be on 7 Feb.  The appointment with liver consultant on 5 Feb was cancelled, as it was apparently 'not needed' until I finish the treatment.  They took blood (three different bottles so I guess three different tests). I also had a CT scan on the same morning, which was ordered by my oncologist, rather than the liver specialist - this  was for both chest and abdomen. They said the results will be ready in a couple of weeks, hopefully in time for my oncology appointment on the 23rd January. 

I will ask for the printouts of all results then, also for the printouts of hep tests.  From what I remember seeing on the doctor's screen back in December, it said Hep A - negative,  Hep B -surface antigens negative, antibodies positive, and Hep C positive for all.  I will write an update when I get hold of those printouts.  In the meantime concentrating on getting that gallon down! 



__________________

58 y.o, recently diagnosed whilst on chemo - resolved B, chronic C (3a), most likely from early 1980s.  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. 

Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Simultaneously Entecavir for B (to prevent reactivation).

Tig


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Hi Ash,

Since Canuck brought up the 4 letter word, “Hydration”, I wanted to share one of our go-to pics. We make sure everyone gets the idea! Strive for that gallon per day, health permitting, of course. 

Here‘s your guide    

E68FE94C-B3CE-4F42-91F4-65B16D475CA6.jpeg



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



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Ash,

Further to you being on the hepb therapy - the info you shared was interesting to me (but I am sorry that this hepb concern even exists that you are forced to attend to with yet another drug therapy)!

They must have done a hepb DNA VL testing on you - even if the VL count showed up nothing (no load), and likely they will do repeat hepb DNA VL testing on you, I am just not sure how often they might do this testing, I might guess as often as every 4 weeks, (I have NO idea really). You could ask them to verify all this for you, to share with you your records of any hepbDNA VL testing they have done, or will do on you, as you go along.

Good to know they started you off on the Hepc treatment at exactly the same time they instituted the hepb therapy, and that they will continue the b therapy when you have finished the epclusa, and when you get back on your Ca chemo.

So, at anytime in your life did you think (even in retrospect) that you may have experienced some jaundice?, even slight, or (in retrospect) experienced some subtle liver infection signs? Anytime in your past, had you ever had any routine hep a or hep b vaccinations?? 

When they finally got around to doing the bloodtests to check your hep a/b immunity levels, and thus also discovered your hep c, it would be interesting to know what they found with your initial hep a/b immunity status(s). For hep b - you can be "surface antigen" positive or negative, and be hep b "core" positive or negative. There are more testing parameters than these, but these would be fairly informative as to further reasons why they might decide to start you on hepb therapy when you do not have a B VL.

You have some fatigue ... is it possible to guess if there is current drug culprit behind the fatigue (the epclusa, the entecavir, or is it just you and everything)?, or maybe all of the above??, do drink lots of water to see if this assists with the fatigue, but it is never a mistake to keep very well-hydrated when on these drugs period. 

You had a Thursday (yesterday) appointment? How did it all go? C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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 Ash,

You were saying to Tig ... "Thank you for the fibroscan info. I got quite a bit of contradictory info so far, the charts suggest 12 or sometimes 14 as the cut-off line between fibrosis and cirrhosis, but I was definitely told at our hospital that it was 9.  Perhaps I misunderstood, and she meant it as something along the lines of '9 is when you start to worry about it'.  At the same time I was told by another that MRI is the best way to establish the level of damage, and so the 'multiple regenerative nodules' is a bad indicator associated with cirrhosis. Either way, it looks like my 7.9 score is good news then!"... 

You are right, there HAVE been different Fibroscan Fscore scale cut-offs used that say ... "over 12.5" kPa's AND "over 14" kPa's equals an F4. Even within this site you will find threads and info containing both the scale cut-offs you mentioned.

When I had my fibroscan done in 2015 by my Canadian specialist, who was under strict guidance of USA Gilead for administering my trial ... their upper limit for the "cut-off" (in order to be classed F3) ended at 12.5 kP'as, when my kPa's reached 12.6, then that technically put me into the F4 class. My providers remained to use that same scale with me until quite recently, when i found out they have made some changes to upper/lower cut-off limits in the F2 and F3 class range - i have yet to find a postable copy of my providers new scale reflecting their small changes (the explanation of the recent changes they adopted was only verbally outlined to me). But, both the one Tig showed here on your thread and the one they used for me from 2015 to 2018, these parameters can still be found referenced on this site and elsewhere.

Yes, dif countries/docs using dif Fibroscan scales does make it confusing!

But the more reading you do, you can see that some people have far firmer livers than just 12.6 or 14 kPa's (F4) - the kPa measurements can go much higher, stiffness measurements go up past 70 kPa's!, so, VERY good you are only (likely) measuring up at 7.9! An averaged fibroscan kPa measurement score is (merely) just a very good tool, ALL other factors, combined (blood tests, all forms of imagings from U/S's, to MRI's, to CATs, to PETs, and a doc with good experience in interpreting everything), paints you the best "guess". I like it when they use all the testing tools available, repeatedly. If not all the tools are used, if they are not combined, if each one is only looked at in isolation, then the data might be more approximate and limited. Chances are your 7.9 may be close, it would take more varied assessments and perhaps more repeat assessments to form a "more certain" guess at how firm, fibrotic, or sclerosed/cirrhotic your liver might be. But it does not sound (by your kPa number alone) to be high enough to be classed F4. So, yes a good thing.

The data of a single fibroscan shouldn't really be looked at alone (in isolation). The info might be too skinny or it could be skewed. Quite a few things can make the results somewhat over or under-accurate (to degrees) - influences and variables such as also having a fatty liver, ascites, tumours, simply being obese, or operator error!

BTW - since cure, my liver has made a remarkable recovery from F4 (12.6) to be within perfectly normal limits, with stupendously low Fscores now. There have been others like me too, one lady said her doc said he has been seeing this kind of recovery post-cure.

If they did not keep you in the dark so much, if you had access to copies of all your own "written" imaging reports (aside from fibroscan results), for U/S's, CAT's or MRI's, you could be reading for yourself what the radiologists report is, what his actual words are, when he describes what he sees on ANY of your imagings, what his "interpretations" are on each one of your imaging sessions you have had done thus far. I am sure you have probably had a fair bit of imaging done thus far, so there would no doubt be written descriptions on anything they have seen via imaging, any tumours, nodules, indications of cirrhosis, enlarged spleen, any abnomalities they might see. You can request a copy of any written radiologists report they store in their imaging records dept, for you to have for your own records at home, you can request copies of any of your radiologists reports usually right at the dept where the imaging was done. Where someone had indicated "regenerative noduales", reading these reports yourself (and the prior and later ones as well) pertaining to changes in the liver nodules, those might be more revealing if you were suspecting you were more fibrotic/cirrhotic than they have indicated to you.

That's all I can think of for now. C.



-- Edited by Canuck on Thursday 10th of January 2019 02:14:38 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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3-4 liters worked for me; no worries. you will drink more if your body tells you it needs more



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Canuck, I don't think they found any VL with B, they found Hep B antibodies indicating that I had it in the past and it must have cleared up by itself.  But they are worried that it can reactivate either due to Epclusa or chemo, so I will be taking Entecavir even after the end of Epclusa.  I will be taking it alongside chemo and up to 6 months after end of chemo. Apparently reactivation of B on chemo is very acute and can be fatal due to low immune system (which makes it even more surprising that they have not tested for it at the start of chemo).

(I haven't read all the old threads yet, but if there isn't already a thread dedicated to info about cancer and hep, perhaps I might start one, as I have accumulated quite a few articles and links about it. But I don't want to duplicate what's already in existence, so if anyone remembers such a thread, please let me know, I will look for it and add to it instead.)

(also - have been trying to rename the old 'hello, new here' thread into something like 'Ash and a twin-headed dragon', instead of opening another thread - but doesn't look possible, should I just start a new one and copy some of the info from here to over there?)


-- Edited by Ashenvale on Monday 7th of January 2019 04:25:13 AM



-- Edited by Ashenvale on Wednesday 9th of January 2019 06:15:22 AM



-- Edited by Ashenvale on Wednesday 9th of January 2019 09:13:09 AM

__________________

58 y.o, recently diagnosed whilst on chemo - resolved B, chronic C (3a), most likely from early 1980s.  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. 

Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Simultaneously Entecavir for B (to prevent reactivation).



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Tig, hope your Dad gets better soon, I am wishing all the best to both of you.  Thank you for the fibroscan info. I got quite a bit of contradictory info so far, the charts suggest 12 or sometimes 14 as the cut-off line between fibrosis and cirrhosis, but I was definitely told at our hospital that it was 9.  Perhaps I misunderstood, and she meant it as something along the lines of '9 is when you start to worry about it'.  At the same time I was told by another that MRI is the best way to establish the level of damage, and so the 'multiple regenerative nodules' is a bad indicator associated with cirrhosis. Either way, it looks like my 7.9 score is good news then! 

Cheddy - indeed, and it feels so good to talk to people who 'get it' (as you said earlier)!

5-1-18 - trying to get that gallon in, really difficult. I just about manage 3 litres.  For some reason I have gone off cold water, just can;t take in more than a few sips.  Hot or warm I can down a large mug at a time.  So I only drink warm now which makes it more difficult to organise.  I try to get extra in by having soups and smoothies instead of normal food, nit sure if it's cheating or still counts!

LilB - thank you, and I saw in your thread that you have started your treatment too, well done and good luck!



__________________

58 y.o, recently diagnosed whilst on chemo - resolved B, chronic C (3a), most likely from early 1980s.  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. 

Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Simultaneously Entecavir for B (to prevent reactivation).



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Canuck wrote:


I am surprized or at least confused as to WHY someone like you who was obviously quite ill to begin with (needing bowel surgery for bowel Ca) and then requiring chemo and heavy duty steroid therapy for same, WHY (by the time of the chemo and steroid use decision) they had not already known about your hep b, WHY they had not already made hep b assessments prior to starting chemo and steroids, WHY they had not checked for hep b first/


 My thoughts exactly Canuck.  I am guessing it's cost-cutting and general lack of joined up thinking.  Our NHS has to follow policy, which works well if the policy in question is useful or even in place. Checking for Hep isn't routine here, just a recommendation, based on whether or not they perceive you as belonging to a risk group.  The 'risk group' is interpreted quite narrowly, although a few articles suggested that our whole generation should be considered a risk group where hep is concerned. But here it's like sitting there with a 20-year-old nurse asking you 'any history of drug use'? That's how the risk group is established - which is back to the 'stigma / perceptions' issue mentioned in tanner's thread. 

My consultant oncologist almost apologized for sending me for hep test - "oh it's only to rule it out, you are obviously not a risk group, very unlikely you'll have it'. This made it much harder psychologically when the results came through and she had to break the news. The liver consultant had a much more pragmatic attitude, he was also surprised that hep was not tested immediately, as my enzymes were elevated even before the surgery. I guess other specialists are simply not as up-to-date about hep. 

It was the same with cancer, I was fobbed off for weeks (mid March to late May) with 'oh it's probably just a bit if constipation, take some painkillers and laxatives' - even though I was telling them I am not eating, I lost 20 kilos in three  months since Christmas without trying (couldn't get rid of excess weight for years, but now it just fell off).  I had a lump which was easy to feel and I was telling them that it had not changed in shape or size for months - but still same answer 'well try these other laxatives'.  Whilst all this was going on the cancer was pushing into other organs and spreading into the lymph system.  They did take various other tests, but it was 2-3 weeks between each step if you know what I mean (rather than fast track, as you would have with cancer suspicions).  Anyway, once I got into the hands of specialists, things moved fast and the care was excellent.  The problem is usually getting there, a lot of time is wasted at the GP level, or when you are treated by one specialist team, but your condition requires another specialism.  Right now it is OK, as my care team officially includes both oncology and hepatology staff but unfortunately it took time getting to this point, and time is not on my side cancer-wise. 

It's one of those things - you can't have something for nothing, always trade-offs. You can have free universal care, which is great - but then it still requires resource (and time for the doctors to read up beyond their specialism and to see patients properly -  they have like 5 min per patient, then go home to their own daily problems).  I am just grateful that things are moving, that on balance the care has been very good and that I haven't had to worry about being able to afford it.  I should probably go post in Iris's 'grateful' thread ;)

 



-- Edited by Ashenvale on Wednesday 9th of January 2019 05:41:12 AM

__________________

58 y.o, recently diagnosed whilst on chemo - resolved B, chronic C (3a), most likely from early 1980s.  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. 

Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Simultaneously Entecavir for B (to prevent reactivation).



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Ash,

This gal, Canuck knows a lot!!

Canuck, As usual, good work!  You are so very well informed.



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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Ash,

 Thankyou for providing very clear and thorough info. You are a good, methodical writer and historian (and speller!)

Yes, it was the chemo drugs that I was wondering what you had been on, and if other than the original bowel surgery, whether chemo was going to be the only other therapy for the Ca. Thanks for sharing all that. You have a lot of drugs and the conditions that go with them to be familiar with! You need to be a doc to be a patient nowadays. You got me well straightened away.

Great sig line - you should also add into your sig. line - "Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019".

Yes, you and Obs said it, everything goes better without the hepc, and thankfully hepc WILL be easy to cure for you. You are right, you are fortunate to get epclusa, goodstuff. And I am right, that the Ca has no bearing on how potent epclusa is. Epclusa has an astounding cure track record. 

Yes, do keep on them to provide you with important and frequent testing and feedback. Attempt to gain the best cooperation you can out of them. I had to spell it out for my doc once, that being tested, repeating the testing and having copies of all of it, was very reassuring to me. Lab results actually belong to YOU anyway, and you do have a right to have copies of them and to know every nuance of them. Having accurate lab detail comparisons at a glance and meaningful communications/interpretations from them is important, if you are like me, I need and want to know everything!, I find it helps me. You ARE having a LOT you are having to going through, they should certainly be understanding of your need to know and to be well informed/apprised. Many folk (over on this side of the pond), can sign-on to receive most copies of their own labs via an on-line computer route. You might consider seeing if that option could work for you, if you cannot enlist their better aid in keeping you well-informed and less in the dark.

It sounds like maybe they ARE giving you your 4 week hepc labs, I suspect there may be many OTHER labs they are drawing too. Aside from your LFT's and VL's for hepc, you are going to want to know what blood tests they are using to follow your hepb and entecavir therapy, AND aside from the many other bloods will likely be dong on you all along, just make sure another frequent one, that they should be doing is to watch your kidney function. You and Obs are right about your liver having to do work to deal with all drugs, but many drugs are also dealt with by kidneys. So, both of these workhorses liver and kidneys need to be watched. When taking entecavir (or sof for that matter!) kidney function is watched. They should be telling you what your first hepb DNA VL count was, and what all subsequent B VL counts are, and how often they will be doing B VL's and what labs they will be using to follow your B. Obs is also right about drinking lots of water for all the reasons she mentioned but I would beg to differ only in that it just MAY help with fatigue feelings (sometimes)!

Yes, many things can insult your liver and your ALT can be a useful indicator of this (from hep c, to hep b, any kind of hepatitis, to tylenol overdoses to alcohol abuse to oh quite a lot of things!) - specifically you had mentioned chemo and it's potential to upset the liver applecart. I am no doc, but the steroid therapy you were on could have well played a big part in sending your hepb and ALT to spinning (JMunprofessionalopinon). In fact I am surprized or at least confused as to WHY someone like you who was obviously quite ill to begin with (needing bowel surgery for bowel Ca) and then requiring chemo and heavy duty steroid therapy for same, WHY (by the time of the chemo and steroid use decision) they had not already known about your hep b, WHY they had not already made hep b assessments prior to starting chemo and steroids, WHY they had not checked for hep b first/and thereby likely discovering the hepc back then as well!! I read some articles that said that Ca docs do check their patients for B and C and other liver issues as well checking for kidney function, and other organ issues, they look for a multitude of conditions of which they should know about, prior to chemo/and systemic steroid use. I wonder why they did not/could not have known about your B and C prior to the Ca chemo and steroid use! Now, saying all that (out of my medical ignorance), I am also guessing that had your B & C been discovered right away, or at least say at the time of your bowel surgery, that perhaps you would have still had all these treatments, just in what order and with how much delay between them might have been the questions, perhaps you may have had the B and C drug therapies started first and the Ca chemo and steroids later.

We have had others here with Ca conditons that were going to require various therapies, including various chemo therapies, TACEs/ablations, to steroid use, and people with other conditions that were probably going to require steroid use, and of our people who had liver Ca, many had their liver tumour treatment completed prior to their hepc treatment, others had certain Ca treatments/or conditions put on the backburner until they had finished their hepc treatment (with that "treat the hep c first" while the other condition(s) can "wait" scenario - a fellow with a B lymphoma comes to mind) -  and BTW the lymphoma guy had his lymphoma resolve post hep cure (and last i heard he never did have to have any further treatment for his lymphoma, as they no longer found any evidence of the lymphomas existence)! We had a vasculitis guy who was just about to do steroid therapy for his vasculitis, until they thought better of it, and postponed all that until after he completed his hep c treatment instead. 

Well, that is all i can think of at the moment to bombard you with!, drinks lots, rest, do you have good support at home? C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Welcome Ash,

I'm glad you are here.  You've found a really knowledgeable group of people who have been through HCV treatment or a on it.  I found that nobody else really "got it" including my medical team.  Why would they, really, it's so personal.  This team saved my sanity and pulled me along when I was on one of the older (but not really old) treatments.  Things are better these days, with new DAAs.

Speaking of things being better these days.  I had a remarkable recovery.  I hadn't felt so well or optimistic in a long time.  I got rid of more side effects than I knew I had.  

You've been given a lot of terrific advice below so I will leave it at this.

Keep us up to date and add any new info to your profile and/or signature line.

You're a tough cookie, Ash.  Hang in there!

Cheddy

 



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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ash's thread

yes , water, water ,water we all swear by a gallon a day



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Oh my, you have been through so much already!

Welcome, Welcome Ash.

So glad you made your way here,

I am sure you will find this a good place to be, the folks here have already helped me immensely and I have not even started treatment yet.  

Wishing you the best in your journey through all of this. 

 

 

 

 



__________________

Age 62

Diagnosed 2007

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L

GGT 76 U/L

FIBRO BUN 9 mg/dL

FIBRO PT INDEX 103 %

FIBRO METAVIR CLASS F2

INFLA PT SCORE 0.73

INFLA METAVIR CLASS A1/A2

 

Tig


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Hello Ash,

Welcome to the forum, I’m really glad you’re here. You’ve met some of the good people here and have already received some good advice. Sorry about the delay, but now that they know it’s the HCV causing the sharp LFT elevations, they’re already busting tail to catch up. You mentioned things were starting to shrink and that’s a very positive sign!

You mentioned your Fibroscan score and it sounded like you were unsure of the fibrosis scoring used on that test. I want to add a chart here that will explain it better. Cirrhosis is considered F4 (14+) At 7.9 you‘re considered F1-2, which is low-moderate fibrosis.

Others mentioned hydration. That’s very important! If your other health care allows a gallon of water per day, try hard to achieve that goal. It will greatly reduce the side effects associated with Epclusa and all other DAA’s, namely headache and fatigue. 

Keep us informed.

 



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Thank you Observer, yes I agree, getting rid of Hep will have a good impact on chemo - and if nothing else, I will need my poor old liver in reasonable shape to metabolise those painkillers when I eventually need them. (So far my cancer has been pain-free, but sooner or later this is bound to change). I am quite hopeful about this treatment, it's only been approved here for NHS a couple of years ago, so I've been lucky to get into that window. From what I have read so far, the success rate is much better compared with the past treatments!

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58 y.o, recently diagnosed whilst on chemo - resolved B, chronic C (3a), most likely from early 1980s.  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. 

Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Simultaneously Entecavir for B (to prevent reactivation).



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Thank you for your warm words and blessings Iris, much appreciated!  And 5-1-18, thank you for the reassurance, it is good to know that people have gone through this with good outcomes. I have been searching forums but have not found anything on this 'crossover' - cancer forums I have looked at do not mention hep, which is surprising since liver is so vital for metabolising cancer treatment.

Canuck - thank you for the helpful pointers and sorry for the confusing bits in my post, it was very late here when I posted it.  I have added clarifications in the signature too now. To answer your questions, the 'other drug' (for B) is Entecavir. Yes, by 'next Thursday' I meant 10th Jan, and you are right, it's actually this Thursday. It makes sense what you said re 4 weeks, I think the appointment on the 10th is to give me the next lot of meds and to do the tests at the same time.   The start of treatment date was also incorrect, 14 Dec was when I picked up the first lot of tablets but this was in the evening, so I actually started on the morning of 15 Dec.  Can't even blame all this errors on 'chemo brain' anymore, since I am not on chemo! 

I am pretty sure there was another blood test just before start of treatment, I just don't have the results.  The policy here seems to be 'don't ask - don't tell', so they just tell you 'it's fine' or 'it's quite high', rather than numbers - you have to push for numbers each time. I will ask for updated info when I go in for my appointment this Thursday and will bear in mind what you said about the week 4 LFT. Hopefully that's what they have already planned!

EDIT:  Canuck, when you asked about the drugs / treatment plan I had before discontinuing chemo, did you mean my chemo treatment? If so, then it was fortnightly FOLFIRI regimen (5FU + irinotecan), through the drip over 48 hrs.  Plus steroids (dexamethasone) to combat the chemo side effects (which in my case were accidentally over-prescribed to almost a double dose and caused more side effects than the actual chemo).    I think all those drugs can potentially affect liver, and that's why the first reaction was to give chemo a rest.  The hep flare-up was possibly due to chemo.  The loss of time is very unfortunate, but I am just glad to be on treatment finally.



-- Edited by Ashenvale on Monday 7th of January 2019 05:59:32 AM

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58 y.o, recently diagnosed whilst on chemo - resolved B, chronic C (3a), most likely from early 1980s.  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. 

Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Simultaneously Entecavir for B (to prevent reactivation).



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Welcome Ash, 

sorry to hear of your troubles. But at least you will get rid of the HCV ...its such a nasty, mutating, cell altering monster. If youve been packing it since the 80s its certainly done enough damage. 

I hope youll keep us informed when you get your 4 week bloodwork back.

Drink lots of water to help with any side effects of the DAA ....(doesnt help directly with fatigue, but it really does help with headaches or other sides)

its  good to give your body a way to flush that dead virus out.

For fatigue...I assume as you were on chemo, you were already laying low so just rest as much as you can/need to. A gentle walk everyday is a good idea if you can manage that, but dont push yourself. 

I cant help but think that getting rid of the Hep C will have a good impact on your chemo when you restart.

you are quite the warrior



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

3 years...post tx... successful dragon slayer 



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Welcome here Ash. Sorry for your unfair share of troubles.

If your 12 weeks of Epclusa SOT was Dec 14 (EOT March 8), your 4 week mark should be on Friday Jan 11 (if I have your dates correct).

You said you were going "in for tests next Thurs" - I am assuming "tests" means  (at minimum) all your "hep related" bloodwork at the lab?, and, I hope you will be having these lab tests drawn on Thursday (Jan 10)?, or ... do you mean next Thurs (Jan 17)? I hope you mean Thurs Jan 10!

If they do NOT have your hep related labs booked for THIS Thursday (Jan 10), and if it was me, I would be calling whichever doc is the best one to get this sorted quickly, to make sure you have your hep related bloods drawn at your 4 week mark (Thursday/Friday Jan 10/11).

I think it is best to know as soon as possible what your ALT and everything is doing, and how quickly and when your ALT and things it comes down/ improve.

Chances are your ALT may already be quite improved. Decreases are often seen to happen by the 4 week mark, not in all cases, but often there will be at least a telling downward trend. It would be informative and a comfort to you i think to have this info sooner than later. 

Having LFT's and VL drawn at week 4 is very common, and in your case, I would want them done then, AND additionally as frequently as they will do them, as this is good feedback for them and everyone concerned, regarding ALL your treatments.

You are juggling three treatments, if we acknowledge the hep b, as well as the current hep c therapy and the Ca chemo that could not be completed as yet. I would like to know what they decided to give you regarding the B - you mentioned they put you on something for the B? This info can happen later, if you are Ok in sharing it, but it might be good to know the kind of drugs and treatment plan they had you on before they had to discontinue the Ca therapy.

I can understand your wish to get back on the chemo treatment - they will figure out when you should do that. Until then all I can suggest is pushing for the frequent lab feedback, following and appointments, so we all know what is improving and how quickly. Off the top of my head I would say the Ca situ will not prevent the epclusa from curing your hep c, the hepc may turn out to be easiest of the maladies to be get rid of.

If your last ALT at 234 was drawn in Nov, I am kind of surprised if they have not drawn (at minimum) some repeat LFT's since then to now!

I would push for labs to be drawn this week, not next. I can see no reason NOT to do the 4 week hep related labs by week 4!

I wish your hep doc consult appointment was at 4 weeks, and that this went along WITH the results of your 4 week hep labs! Due to lab lag-times, and doc scheduling this may not be possible tho.

Glad you arrived here, we will try to help where we can. That is all I wanted to convey in a hurry, for now, but everyone around here knows how long-winded I normally am!, this is the short version -  it will be a pleasure getting to know you. : )  C. 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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welcome ash,

i know someone that had the  cancer/hepC merry-go-round. he's doing well now, cured of C and in remission from the cancer.

hang in there , this is the place to voice your concerns and all else.

5



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Welcome! Come on in. You do have an awful lot on your plate. Take care to follow your heart. I'm not as familiar with your course of treatment there are others here a little more well schooled ,

however I am wishing you well and with the best outcome possible,

with big hugs when ever you need.one

Blessings, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Hello everyone,

I am 58 and was diagnosed with bowel cancer in spring 2018.  Gone through surgery in the summer, then got more bad news (multiple mets in liver, lungs and lymph nodes).  Started chemo in late August, got halfway through it by late October - and finally the first bit of good news, cancer began shrinking a bit - yay! 

Rushed to tell the family and colleagues at work - only to receive the phone call the same afternoon about elevated ALT / AST, chemo postponed.  Two weeks later - ALT/AST still rising, chemo postponed again.  No one thought of Hep but all suspected it's reaction to chemo, so a few more weeks were lost just waiting for the enzymes to 'calm down'.  ALT/AST were continuing to rise (from 96/83 at the start of chemo in August, which was already above the norm, to 234/238 late November when the consultant finally requested the Hep test, 'just to rule it out' and referred me to hepatology. 

The tests showed up inactive Hep B and chronic Hep C type 3a, most likely from 1980-81 surgery / blood transfusion.  MRI showed 'multiple regenerative nodules' throughout the liver, but fibroscan showed 7.9 (was told cirrhosis is 9 or higher, so still fibrosis).  Was told that viral load 2.5 mil, which 'could be worse'. 

Started Epclusa 3 weeks ago, as well as another drug to prevent B from reactivating.  Very fatigued, but otherwise OK. Main worry is the impact on cancer (interrupted chemo, and no idea when will be able to restart), and vice versa (that cancer might affect the hep recovery chances).  Going in for tests next Thursday and hepatology consultant on 5 Feb.  If ALT/AST come down to normal, might be able to restart chemo before completing the treatment.  Wondering how quickly those numbers come down on Epclusa and if cancer affects its success rate.  Wondering if my luck will turn soon.

Anyway - just wanted to say, I have been reading this forum in the last few weeks since Hep diagnosis, it's been great help, thank you!

 

EDIT: Was posting late at night, some unclear / inaccurate info there, corrected this in the signature.

 



-- Edited by Ashenvale on Sunday 6th of January 2019 09:57:55 PM



-- Edited by Ashenvale on Monday 7th of January 2019 04:25:13 AM

__________________

58 y.o, recently diagnosed whilst on chemo - resolved B, chronic C (3a), most likely from early 1980s.  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. 

Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Simultaneously Entecavir for B (to prevent reactivation).

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