Living with HCC

[soooze50]

Is anyone living with HCC because treatment is not possible, transplant also not an option. My friend has hep c, was an alcoholic. Weighs 39kg, does not wish for any medical intervention to extend life. Wondering how things will progress

[tillycindy]

hello there snooze. Think this is your first post. Quite a few people I believe on this site have experience with HCC, so they can advise you regarding that. Unfortunately I know more than I care to about alcohol and hep c!. You don,t give much information which will help people help ( if that,s even English). For example what is the time line?. When were they diagnosed, and what exactly were they told?. Is it their choice hep not treated which alone extends life. It,s possible lots can be done, so is the wish for no medical intervention a constant or due to other factors for example depression. What if any help are they accepting, diet for example. I do know that doing nothing with HCC does not bode well, but often things are not as bleak as we believe. Hope all is well with yourself. Keep posting . best wishes, anne. P.S just thought, Bolly is very good.

[soooze50 in reply to tillycindy]

Hi and many thanks for reply. We think virus contracted via blood transfusion back in late 1960s...this was only detected 5 years ago, after massive ascites, varices bleed, jaundice etc. In the interim, been a heavy drinker which combined with the virus, has meant we now have decompensated, liver ...has had no virus treatment, is extremely weak, eats miniscule amounts. Yes have had dietician advice, sleeps a lot during the day, has drenching night sweats. Quality of life pretty low, and yes depression. Is really a skeleton of bones wrapped in skin. Trying to exercise, but so weak, and no muscle. Not drinking alcohol now. No salt, very healthy diet, but in such tiny quantities. Am doing all I can to help, not sure what else I can do. Many thanks for the response

[Catfishjumpin]

The virus will create cirrhosis until it is dead. The liver will become a mass thru which blood and oxygen can barely flow. Portal hypertension will develop and varices will develop in the esogphaus but they can be banded and blood pressure medicine will hold the pressure in them down. Sooner or later Ascites will arrive and they drain you for this. Hep c tends to destroy appetite and cause muscle wasting. I had it 43 years. Have lived now with liver cancer more than 2 years. I had two treatments. The virus has been dead more than 2 years. Its a catch 22. Exercise lots and eat the diet of a monk. Stay away from salt. Good luck.

[Liver3 in reply to Catfishjumpin]

You sound close to my.sernario. I was advised to get on transplant list, waiting for Dr. Apt. I thought it was short amount of life time extended. But reading 10 yrs.is encouraging. I did 2 treatments for hep c success with 2nd tratment which then out me into cirrhosis and have been told have other systems. Lately pain on my side, recently nausea with some foods! No weight loss, which is what I need due to now having high sugar counts! Always something! Very scared these days as.no one says how.much time I have????

[soooze50]

Thanks very much, appreciate the comments ,

[Bolly]

To be totally honest, as your friend does not wish for any medical intervention, would they at least consider discussing hospice care? HCC tumours are generally pretty aggressive and can also spread to other parts of the body. Do they understand that this is not going to go away? Without any sort of intervention the prognosis is terminal, and from the way you describe this person they are already pretty sick.

[soooze50]

Thanks Bolly, yes my friend is just too poorly for any medical intervention. When first diagnosed around 5 years ago, she could not face the prospect of the treatment making her unwell and unable to continue working, so she said no to treatment. Her Specialist told her this was terminal, 3-5 yrs, this is now into the 6th year. She suffered hepatorenal syndrome back in January 2016, which almost took her life, she survived, although has been steadily declining ever since. Her muscle wasting is so sad to see, really just bones wrapped in skin, zero energy, mild HE-memory loss and confusion-eats very little, just teaspoons at a time, sleeps on and off in the day, then unable to sleep at night, mild ascites at present. Unfortunately also has very painful arthritis which the virus aggravates so is on a lot of meds for pain. The HCC is small but obviously will continue to grow. I am her number one support person, and realise there is a short future, although she is not thinking this way. I want to introduce Hospice but know that it will crush her spirit. We see her Hepatologist in 10 days, so I will try and open up the question of Hospice. From my perspective, I am trying to prepare for the likely health issues which could present, really helpful to bleat here for sure! Many thanks !

[tillycindy]

Hi snooze, you do realise that hospice, mc nurses, are there to support you as well. you need not let your friend know you are in touch as it is regarding help for yourself. Bleat away ! ANNE X

[soooze50]

Ok had not thought of this perspective...many thanks