RISK AFTER HEP C TREATMENT: ANYONE BEEN... - British Liver Trust

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RISK AFTER HEP C TREATMENT

Liver3 profile image
22 Replies

ANYONE BEEN ADVISED THAT THESE NEW DRUGS AROUND THE 5 YEAR MAKE ARE CAUSING CANCERS??? MY LIVER DOCTOR ADVISED ME OF THIS THURSDAY, SAID TAKE THE GOOD WITH THE BAD. WE ALL NEEDED TO CONTINUE WITH THE FOLLOW-UPS

ALWAYS SOMETHING ANYBODY KNOW ANYTHING ON THIS? SAID SINCE THE DRUG HARVONEA WAS 1 OF THE 1ST AROUND 5 YEARS HERE IN UNITED STATES AS TRAIL FOR FOLKS THEY ARE SEEING INCREASES IN CANCERS.......HMMMM

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Liver3
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AyrshireK profile image
AyrshireK

There has been quite a lot of research done on this subject. Having Hep C untreated has a higher risk of developing cancer than having had the treatment. Though there should be continued monitoring once the virus is cleared. There is a high risk of HCC with Hep C once the liver has reached cirrhosis stage.

Some of the research around the world can be found at:- fixhepc.com/blog/item/85-di...

Katie

Dldtx profile image
Dldtx

In February 2015 I started the 24 week treatment of ribavirin & sovaldi for HEPATITIS - C = genotype 2b stage 4 fibrosis , Act grade A3 and it worked. I constantly fluctuate right above the tumor marker levels for concern but not enough for the drs concern as I go between 9-17 . As soon as I completed the treatments I begin showing masses in the lungs on the liver in the spleen on the left kidney these where not present prior have both cat scans & MRI’s . As of now I am being evaluated for All kinds of stuff. I had heard the medications where causing problems and have noticed no more commercials for the two I took so I guess I wait and see. But it helps explain some of the sudden repeating of test

DLD 🤠

Hbv1992 profile image
Hbv1992

I have read COUNTLESS stories of people getting cancer after treatment. I recommend you to look into other treatments. Liver health is not to be taken lightly. I recommend looking into monolaurin, AHCC, blueberry extract, quercetin, selenium, oxymatrine. All of this stuff i mentioned is incredibly effective and harmless. Look into all of them.

in reply to Hbv1992

Dear HBV192

The Trust does NOT recommend the taking of these supplements, or any others, without first taking specific medical advice from your liver doctor as they can affect how the liver processes other medications and could therefore be harmful.

Please always take advice from your liver doctor who knows your own medical history and condition before considering taking any supplements and alternative therapies.

The Trust advice on alternative therapies is published on our website here: britishlivertrust.org.uk/li...

Best wishes

British Liver Trust admin team

dizzime profile image
dizzime

Cheers for the information. Up to now know one has mentioned this to me. I had the treatment in 2015 which was successful, thankfully.

I have my next outpatients appointment in a couple of weeks so will be enquiring about it and tests.

On the good side i have recently had a liver scan and blood tests to check the Hep C has not re-appeared and everything is fine and clear. I am very lucky my Drs will do this for me as i am increasingly suffering from ''health anxiety' which really has to stop but it is hard. Anyway keep smiling and stay positive everyone. X😁😁

Saintgeorge profile image
Saintgeorge in reply to dizzime

After my hepatitis c cure following 3 months of harvoni and ribavarin I was told that I would be having a abdominal ultrasound every six months. This is because if you have liver damage there is a risk of liver cancer, it is not a big risk but it is best caught early, hence 6 monthly scan and bloods. Before there was a cure then of course some herbal remedies may be investigated. I was given other treatments before harvoni, telapravin with interferon which almost killed me as I got the rash.

Now that harvoni is being offered to hep c patients, there is hope.

dizzime profile image
dizzime in reply to Saintgeorge

Hi there. Is this because you haven't had a transplant and they are monitoring your liver to make sure no further damage or after transplant. I had the 3 month Harvoni/ Ribavarin treatment 18 months after my transplant as the Hep C was seriously damaging my new liver. After the treatment all my blood tests went back to normal and have been since. I will question the consultants at St James, at my next outpatient appointment, about the scans etc to see if post transplant patients, who have had the ribavarin, should be being regularly checked and scanned. Thank you for the information. 😁😁

Saintgeorge profile image
Saintgeorge in reply to dizzime

Looking forward to hearing how you get on. No my liver thankfully never got bad enough to need a transplant, despite having hep c for 45 years. My actual diagnosis of the disease was in 2010 but I had put myself at risk in the sixties. Good luck dizzime look after your liver, precious.

dizzime profile image
dizzime in reply to Saintgeorge

I wad told i had Hep c in 2011 and went down hill pretty fast and had transplant 2013. Think i got it from a dodgy tattoo in the 70s in someone's bed-sit ahh well we live and learn lol. Good luck to you and stay positive x😁😁

art4949 profile image
art4949 in reply to dizzime

Hi dizzime,

I wonder why they did not give you Harvoni treatment before your transplant to give your new liver a better chance? Or wasn’t Harvoni around when this happened ?

I do believe all of us, having had HCV, are slightly higher risk of HCC even after treatment, so are routinely checked., even post treatment. As for the long term affects of the drugs used to treat HCV...we all react differently to drugs used to cure our HCV.

However, and this is just my opinion, after personal research...that the older the patient the simpler the cure should be. In other words, don’t give a 65 old man Abbvie with Ribovarin who has cirrhosis or even borderline cirrhosis...especially if he has had HCV more than 30 years.

The more complicated the picture for the patient the simplier the treatment should be. Cure rate and complications for those with HCV genotypes 1, 4 and sometimes 3 are usually excellent using Harvoni alone with medium-low viral loads. Clean, simple and no life threatening after affects with a high cure rate. Obviously, the liver specialist will determine what is best for each patient depending on their medical background (heart meds., allergies...)

The trial groups leading up to FDA approval for these new anti-viral drugs seem quite comprehensive but limited. When I accepted my treatment (Harvoni, I refused Ribovarin) it was in my mind that in the long term post treatment....say 10 years down the road...does anyone really know the lasting affects on patients from these anti-viral drugs? There is evidence for Ribovarin but not Harvoni, for example. But, I felt it was worth the risk (except Ribovarin, in my case).

The alternative was a more certain picture of poor, rapidly declining health with no hope. Now I live with hope not fear. And the NHS keeps a check on me every 6 months...blood tests and scans. So, my quality of life has improved thanks to my cure. I am lucky but I am careful(lifestyle choices)...I look after myself, that is my responsibility. If I ever do contract cancer, even as a result of these drugs...well, maybe that info will fine tune treatment for those still needing treatment in the future.

dizzime profile image
dizzime in reply to art4949

I had been tried with the old treatment ( meds and injection) before my transplant but had to be took off as my liver was not coping. My new liver started to reject 2 months after transplant (2013) but the consultants didn't know whether it was rejection or the Hep C which was back attacking my new liver. They said i was tricky!!! Lol. Anyway ended up having 6 liver biopsies after with them checking but still couldn't say. The last biopsy went very wrong basically everything what it says on the paper you sign went wrong except of course for dying 😁 i found out about the new cure ( Harvoni) and kept asking for it but they said i wouldn't qualify for it as not ill enough, can you believe it. Eventually i got my GP to refer me back to the infectious disease clinic and asked if they could do anything for me. They were brill, my fibro scan was over 12 and they put in a special request for me and they got me the treatment in April 2015 and yep i was cured. Even with all this talk of possible cancer in the future i wouldn't change a thing and would have still had the treatment the alternative is not ever worth thinking about. It has made me have a life again and hopefully a good life in the future. Non of know what the future holds and maybe i could have got cancer anyway which has nothing to do with the Harvoni. Fingers crossed i never do and everything is rosy. Good luck to your future and may you live a long and happy life. X 😁😁😁

Lucien777 profile image
Lucien777

Uhmmm that sounds really promising 😓 NOT! I'm in the UK and haven't heard of this at all?

Lucien777 profile image
Lucien777 in reply to Lucien777

Also I was told will be followed up 3 months after treatment, 6 months after, one year after and two years after and then discharged 😶 I'm on treatment right now, read the research and as with anything there is always a risk. What's the alternative, not having treatment, which has risk of liver cancer too, and higher.

Hello , My name is Barry I was told I had Hep c 6 months after my groin filled with fluid at the gym( Noverber 2015) ( the Doctors didn't pick up on it due to my over healthy behavior so my g.p. told me) I went to liver specialist who scanned and found no cancer (march 2016) and i was on a waiting list to see the liver clinic ..5 months later I was seen at Denmark Hill ( a lot of fluid retention was present )

On the 10th of October I was given the anti-viral drugs a further two weeks later 3 doctors contacted me (each unaware of the other 2) telling me how impressed they found my reaction to the drugs and that after only the one blood test (taken 2 weeks apart) the Hep c virus was undetectable ..I was of course over the moon ...however ..

The fluid remained and based on this my doctor sent me for another scan and on 9/11/16 (my 9/11) I was told that I had a large tumour in the liver (portal vein) ..I remember nothing of that day afterwards but I know I had to catch two trains home .

The following week the oncologist told me I had till the following October to live (based on statistics)

I have done a lot of reading since and for example in Italy 300 with hcv treated with the same drugs as mine 150+ developed large aggressive tumours (just like mine )

I have returned to Australia to 'die' last Feb 17

i've had a SERts procedure performed last May 2017 this seems to have had an effect .

When I arrived my tumour was 18c.m. now its as of last scan two months ago it is less than 9cm .

I have however had some discomfort in that upper abdomen area of late so wish me luck on the next scan.

SERts procedures are expensive and are not put forward which angers me greatly ,its extended my life and improved it ( i dont look like i have cancer and back at the gym

Really hope this helps

luck!

Liver3 profile image
Liver3 in reply to

Thank-you, thank you so much! Very informative I am sending prayers for your continued good health. My story similar as in treated and cured of hep c. With the new anti-viral drug Epcula mis spelled sorry!

Thankfully, watching out for cancers or tumors forming within the 5 year term per my Liver Specialist. Pls keep me /us updated as you progress forward. Barry which drug did you take. Since I have been at the gym, daily enjoying my work-out and feeling Good! We'e in God hands each of us. Keeping the faith and trying to live healthy!

Lucien777 profile image
Lucien777 in reply to

I wish you all the very best 🍀🍀🍀

AyrshireK profile image
AyrshireK

Remember if you already had cirrhosis prior to treatment with any anti-virals you already had a risk of developing liver cancer. Hence the protocol that anyone with cirrhosis have 6 monthly ultrasound scans to check for changes or cancers appearing in the liver. Early detection can allow early treatment if any cancer is found.

Lucien777 profile image
Lucien777

So is this cancer risk and to watch out for true for all the new antivirals? I wonder if they even know about this in the UK 😨 no one has ever mentioned or heard this being told to them by any doctor here. That's quite scary...

Lucien777 profile image
Lucien777 in reply to Lucien777

Maybe that's why they say some antivirals can't be used in advanced liver disease or cirrhosis, but no one ever said why.

Liver3 profile image
Liver3 in reply to Lucien777

Maybe, I didn't know to ask. I didn't have cirrhosis when I started the anti-viral drug treatment.

Liver3 profile image
Liver3 in reply to Lucien777

Yes, according to Texas Medical Center Specalist . We all have to watch out for increased risk of cancers. As We should be monitored for life! Or maybe 10 yrs. I am happy I'm cured. And will keep a watchful eye. Good Bless everyone battling illness as hep

belintte profile image
belintte

I did the Solvadi and Ribivirin and it cleared the Hep C I have now developed cancer I had not reached the cirrhosis stage, I feel like I was a guinea pig and I really don't know what to say. I am scared shitless though.

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