Liver Cancer

[hepcandme]

So, looks like I have liver cancer which is not uncommon for those who suffered from Hep C and treatment to be cured from Hep C. I'm not really sure where I should go here because all of the old-timers that supported me so much through the angst of the disease and treatment, have all either died or left this forum. Posting here to see if any of my old friends are still around but welcome suggestions to other forums/groups

[crossroadsec]

I wonder if I"m writing in the right place. So much has changed around the site. I'm survived liver cancer honey. Get you a TACE treatment and get listed if you can. I know MANY who get the tumor blasted and keep going. I may not come back!

[hepc4Sandi]

I'm an old timer too, was cured 5/1/14, and was just reflecting today that I am coming up on 10 years. I remember December of 2013 I was pushing for the new cure coming up in Sovaldi. Thank goodness my liver is still good, I still have tinnitus which started 1 week into the cure, but a small price to pay.

[somuchmore2]

Hello,

I understand your journey all too well.  I was active on the group for years  but once cured with harvoni in 2015.  Then later had a bleed then HCC in 2019.  Treated 4x tumors latest on 8/22.  Ten days later I received Gift of Life  from an donor.  Nearly 18 weeks post and riding a bike along ICW east coast.

Have you checked out transplant options?

[NoelBluesky]

Aloha, I think I am one of the oldtimers. Your nick looks familiar, but mostly I was on my own forum,  Stand for Something and the Hep C boards in Delphi Forums. I'm sorry to hear about the cancer. wow. it's been two years since you posted this. Are you still here. Love and Blessings, Noel aka Coyotebleu/ A_Seagoddess

[Nenan3855]

I’m still around but after hector passed I had a hard time coming back.

[flyinlynn]

Yeah I know what you mean. I miss him every day

[FaithforHealing]

I hear you, it was sad and tragic.

[somuchmore2]

Me too.

Treated 4x for HepC. Finally SVR 2015.

Then HCC in 2019.  Treated 2x for small <2cm tumors.

Wondering if any of who guys with HCC went on to LTP?  If so how long did take journey take?

[flyinlynn]

They only one I can think of was HectorSF if I recall he was waiting a couple of years while dealing with having HCC. At one point he want eligible because of the size of his tumor. They used a technique I think called alcohol ablation to shrink his tumor making him eligible again for transplant. He was transplanted very quickly after that if I recall

[flyinlynn]

Waiting times are based on your MELD score and what center you are registered in from what I remember Hector saying most transplants occur for people with meld scores in the 30’s and higher

[flyinlynn]

Some data on average MELD scores for transplant by state

https://optn.transplant.hrsa.gov/media/2812/mts_distribution_document.pdf

[flyinlynn]

“ Wait for a match

The waiting period for a deceased donor transplant can range from less than 30 days to more than 5 years.4 How long you will wait depends on how badly you need a new liver. Other factors—such your age, where you live, your blood type NIH external link and body size, your overall health, and the availability of a matching liver—may make your wait time longer or shorter.”

https://www.niddk.nih.gov/health-information/liver-disease/liver-transplant/preparing-transplant

[somuchmore2]

Have you seen this new treatment coming with FDA Clearance happening?

https://fox59.com/business/press-releases/cision/20220531CL72125/histosonics-hits-pivotal-clinical-trial-milestone-in-hope4liver-studies/

[flyinlynn]

No I had not looks like exciting news Thanks!

[somuchmore2]

Hope you are doing well.

This COVID19 world is so strange.

Did you find another place for knowledge and support as you managed the cancer?

[flyinlynn]

Hi hepcandme

Any updates how is it going?

Sending you my best wishes for good health your way

[susan400]

Hi, I remember you!  I don't come on her very often at all.  I am so sorry to hear of your news!  That is a hard pill to swallow.  I don't know of any words to say except I am very sorry to hear this.  Yes, I still get ultrasounds, but my doctor moved mine out to once a year and fibrosis labs once a year.  I do still have some fibrois.  Will they be able to do anything to treat this ?  Can they do surgery and radiation?  Anything?  Susan400

[flyinlynn]

Hi Susan

Were you diagnosed as F4 cirrhosis before you treated?  Has your F score decreased to less than F4? How are your platelets?

I’m still having labs and ultrasounds every six months. I did a couple of fibroscans since I was cured in 2015 but they still show as cirrhosis F4. My platelets have increased a little. They were around 85 before I treated but are now up to around 125 so just slightly below minimum normal of 150.

Happy to hear your doing so well

[susan400]

No.  I never progressed to cirrhosis.  The highest fibrosis score I ever got to was F3.  I had bridging for a period of time.  However, the bridging went away and the fibrosis dropped to F2.   My platelets were always in the normal range.  I think if I benefited at all from all those many back to back treatments, it was in keeping the virus from progressing to the point of cirrhosis, until I finally go undetected.  If you remember, i was unrelentless on doing Tx after Tx.   I don't have access to fibroscans in the county that I live in.  In all the years of being treated for Hep C, I had 5 liver biopsies, numerous ultrasounds and 1 fibroscan.  Now, all my GI doctor does is once a year sono and fibro labs.  I really don't see a hepatologist.  My GI doctor did a fellowship with a hepatologist at the University of FL, right before he finished up and went into private practice.  The hepatologist at the University of FL - where I was finishing up on a clinical trial at that time.., referred me to the GI doctor that I mentioned above.   And then, I got SVR so, there was not any need to drive for hours to get to the hepatologist anymore.    I hate to here that you are still having so much to go through.  I feel very fortunate to have finally gotten a break and getting to SVR.   Take care my friend. My thoughts and prayers are with you.
Susan400

[flyinlynn]

Hi I promise I’ll get back to you soon

[cleanmachine516]

OK, GOOD LUCK

[cleanmachine516]

hi, Believe me I am an "old timer" and when through the Peg Interferon and Ribraviron around 2000. What is happening with you now???

[hepcandme]

I have liver cancer. A small tumor that my doctor says is treatable. The size of a nickel. Liver cancer is the reason we all have an ultrasound every 6 months since our diagnosis. I also have a blood clot in my portal vein and spent a week in the hospital to start the new year. I know that some friends dealt with these issues as they are part of the what could possibly happen now scenario. I used to depend on this group so much but must confess that once I was cured of Hep C, I no longer felt the need for that connection. So, happy to hear that you are an old timer and still around!

[cleanmachine516]

Hi, hope you are feeling well. After reading your post it got me thinking , that's the same way i felt. I just came back to this site by mistake actually but now I am back to thinking about Hep C, I am one of those people who gets something in their mind and can't think of anything else. Anyway , now that i read your post, I thought I was cured and that was that, I hope you are not going to tell me that i should be looking for other stuff from "the past", but now that i read it I have to know - please tell me. I never get an ultra sound, should I ?, I do get blood tests and my liver tests are all right. I just had an endoscopy - would that show signs of anything ?  

[flyinlynn]

The ultrasound and blood testing every six months is for those of us with liver cirrhosis. Did you have liver cirrhosis or a fibrosis score of F3 or F4 before you were cured of hep C?