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Hep C Discussion Forum -> On Treatment -> 'Ash and the twin-headed Dragon'
Post Info TOPIC: 'Ash and the twin-headed Dragon'
lilbrownie


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RE: Hello, new here - found out about Hep whilst on chemo
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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
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

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
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

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Ashenvale


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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!

__________________

58 y.o, diagnosed on chemo - resolved B, chronic C (3a).  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019.  Entecavir for B (to prevent reactivation).

Updated 4 wk test - AST 25 ALT 25 Hep C RNA not detected. Chemo restart 8 Feb 

 
Ashenvale


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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

__________________

58 y.o, diagnosed on chemo - resolved B, chronic C (3a).  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019.  Entecavir for B (to prevent reactivation).

Updated 4 wk test - AST 25 ALT 25 Hep C RNA not detected. Chemo restart 8 Feb 

 
Observer


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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



__________________

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

4 years.... successful dragon slayer 
Canuck


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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. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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)
5-1-18


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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



__________________

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=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
Iris Dragonfly


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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)
Ashenvale


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'Ash and the twin-headed Dragon'
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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



-- Edited by Tig on Wednesday 6th of March 2019 04:31:08 PM

__________________

58 y.o, diagnosed on chemo - resolved B, chronic C (3a).  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019.  Entecavir for B (to prevent reactivation).

Updated 4 wk test - AST 25 ALT 25 Hep C RNA not detected. Chemo restart 8 Feb 

 
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