HCC and what to expect.: Hi. I was... - Blue Faery Liver ...

Blue Faery Liver Cancer

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HCC and what to expect.

RolloMay profile image
RolloMayPatient
27 Replies

Hi. I was diagnosed w/ HCC 2 1/2 months ago. I have been on immunotherapy for 6 weeks. So far, I have experienced: tumor fever every night. Pain which had gotten severe last month. I am starting to lose my appetite as foods don't seem to taste good anymore.

Can anyone who has been fighting this longer let me know the possible future course.

27 Replies
WayCas profile image
WayCasPatient

This is Wayne. I have communicated with you before. Can you tell us more about your cancer. Such as size, single or multiple lesions, portal vein thrombosis, metastasis and previous treatment. This may help understand where you are.

Thanks,

Wayne

RolloMay profile image
RolloMayPatient in reply to WayCas

Sure Wayne, Thanks. I think initially had 4 tumors - 7cm, 7cm, 3cm and 3 cm. (Supposed to have first updated (3 month CT scan) in 3 weeks to get current status. No portal vein thrombosis. No prior treatment. RE: metastasis, not sure if I heve solid clarity. (Can't tell if they mean metastasis within the liver (microfocal) or possibly to the Loco regional lymph nodes; not sure what this means either. Obviously, still learning.

WayCas profile image
WayCasPatient in reply to RolloMay

Rollo, Thanks for sharing your information. First, from what you said. Has a transplant been discussed. Second, your symptoms are not uncommon during treatment. I was told tumor fever was caused by dying tumor cells which sounded positive. Best wishes on everything and prayers.

Wayne

RolloMay profile image
RolloMayPatient in reply to WayCas

Hi, Wayne. I was told the tumor in the liver was multifocal. They are also looking at a few lymph nodes. I'm supposed to have my first follow-up CT in 3 weeks and heard this was pretty important. I have been told by all initial doctors I saw that I was not a surgical candidate.

RolloMay profile image
RolloMayPatient in reply to RolloMay

Hi Wayne. I'm not sure how many tumors or the size. Was told areas seen which are potentially metastatic. No biopsy done. Dr currently focused on medication. At my next visit in 3 weeks supposed to get CT scan. I will ask about these, at that appointment.

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner

Hello RolloMay,

Have you gotten a second opinion? Also Wayne is correct. There are so many factors that go into treatment decisions.

~Andrea

andrea@bluefaery.org

RolloMay profile image
RolloMayPatient in reply to AndreaWilson_Founder

Hi Andrea, yes I got 2 opinions before then seeing my current oncologist. I'm very happy with my doctor and treatment team. With my questions above, really just trying to get a feel of the landscape. Prayers to everyone.

RolloMay profile image
RolloMayPatient in reply to AndreaWilson_Founder

Hi. I'm not sure I communicated clearly buy I have not been classified as a surgical candidate. "I was told by several initial oncologists that I had too much tumor in my liver". I am very happy with my current oncologist.

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner in reply to RolloMay

I'm glad to hear that!

RolloMay profile image
RolloMayPatient in reply to AndreaWilson_Founder

Hi Andrea, I'm a little confused. Many are saying a second opinion, yet they all have said the same. I'm currently with one of the top doctors in the country. I will have been on immunotherapy 3 months in @ 2 1/2 weeks and am to return for a follow up CT. I am 52 years old, no liver problems, no problems now, Child Pugh score of A. If I meet (or now meet criteria for operation), would be a blessed miracle.

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner in reply to RolloMay

Hey RolloMay,

If you are happy with your doctor, don't worry about other people's advice. Including mine. I always recommend a second opinion because most people 1) never get one and/or 2) are not seeing a provider who specializes in HCC, which is critical. I'm curious though--given how healthy your liver is, is there a reason you didn't qualify for surgery or a transplant? Just curious.

~Andrea

RolloMay profile image
RolloMayPatient in reply to AndreaWilson_Founder

Hi Andrea, let me go back and look at my chart notes and see exactly the size and number of tumors (I want to make sure I'm telling you correctly). But that was the reason given, "Too much tumor" (and multifocal). More soon.

RolloMay profile image
RolloMayPatient in reply to RolloMay

Hi. I could not find the exact number of tumor or size, but I think this is what made me not eligible for surgery.

RolloMay profile image
RolloMayPatient in reply to AndreaWilson_Founder

Hi Andrea. I replied to your question below, but reread your post. I'm sure you know much more @ HCC. Considering I have a Child Pugh score of A; would this be enough to overcome, "Having a lot of tumor in your liver"? Please advise.

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner in reply to RolloMay

Hello RolloMay,

Unfortunately, probably not. That's the thing about HCC and why it's much more difficult to treat than most other cancers. HCC is a disease within a disease. So while a Child Pugh A score is good, the number of tumors is not. Do you know if you have tumors in every lobe? Are they well differentiated or poorly differentiated? Do you have any underlying liver disease (e.g., hepatitis C, cirrhosis)? Do you have both a hepatologist and a medical oncologist on your treatment team and if so, do they work together well? Sorry for all the questions. Also, please feel free to email me. Our Medical Research Advisory Chair can provide a second opinion via a telehealth appointment.

~Andrea

andrea@bluefaery.org

RolloMay profile image
RolloMayPatient in reply to AndreaWilson_Founder

Hi Andrea, I have now had HCC for 6 months. I would love to have the surgery or transplant. I was told I had too much tumor in my liver to qualify for either. I still have a child-Pugh score of A. At my next appointment in 3 weeks supposed to get CT. I will find out specifically how much tumor is present.

Joschua profile image
JoschuaPatient

Hi Rollo, oh yes I know what you mean. The food is not tasty anymore and appetite is nearly gone. Also feel sick most of the time

If you have a a slow juicer you can drink food which helps also with digestion problems. Im on pain killers so don't have any pain. This condition is in my experience a roller coaster. Sometimes stable for weeks and than suddenly feeling worse again.

I wish you all the best and I'm sure if you give more information other members can help you more.

Fritz

RolloMay profile image
RolloMayPatient in reply to Joschua

Hi, thanks so much Wayne (above) asked that I provide more information, too. If can think of other things to add please advise.

RolloMay profile image
RolloMayPatient in reply to Joschua

Hi Joshua, I recently found out what was causing be appetite issues and eating issues. This may be helpful. I was told I had a candida infection on my tongue, which changes the taste of food but esp makes diff to eat painful tongue. Was started on a swish and swallow.

Iggy08713287 profile image
Iggy08713287Patient in reply to RolloMay

hi , I am having similar problem with painful tongue and gums. Everything I eat taste spicy and it’s not. Who diagnosed your candida?

RolloMay profile image
RolloMayPatient in reply to Joschua

Thank you so much for you reply. It's reply's like this that make these type of websites unvaluable. Not because they tell you what to do, but because they are a springboard of ideas. I can relate to you situation. (I know you didn't specifically mention 'dry mouth'), but I've had an extremely dry mouth. I thought of a possible solution for myself. (Watermelon). They are tasty and have a lot of water. I'm going to try them tonight.

Joschua profile image
JoschuaPatient

HI this is most helpful. What can you do against a candida infection because my tongue is hurting to. Thank alot.

Yoshua

RolloMay profile image
RolloMayPatient in reply to Joschua

Yes, See Editor's answer, below.

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner

Hello Joschua,

Ask your healthcare provider about Nystatin or Peridex.

Joschua profile image
JoschuaPatient in reply to AndreaWilson_Founder

OK thanks ks will do that!

DancingEyes63 profile image
DancingEyes63Caregiver

Hi Rollo. We haven't spoken yet. My husband Jimmy was diagnosed with Stage 3b HCC in December 2020. He did treatment for the first year, Lenvima and then immunotherapy but wasn't working and instead damaging liver more and horrible side effects. He was terrible shape this time last year. He made the choice to stop treatment and try to enjoy the time he had. At that point, we didn't think it would be much. He was Blessed with a year and he had a blast. We lost him last week when his liver failed. If you ever feel depressed, read some of my old posts and they will cheer you up. ❤️ Anyway, Jimmy used those pop ice things to help his dry mouth. You put them in freezer. He also had the sores in his mouth and used both of the medicines that Andrea had mentioned. I'd put Powerade or Gatorade bottle in freezer and let it get slushy also and he loved them. The oncologist gave him something for the no appetite. Its a white liquid, believe it's called megestrol? You could ask doctor. The nausea was constant unless he took Reglan 3 times a day to keep in his system. Also had Zofran if we needed. It all helped. He had lost 75 pounds that first year and he'd gained weight back and even muscle mass the last year. Oh we discovered that Pedialyte tastes better slushy also. LoL. Good luck and hang in there.

Sharon ❤️

RolloMay profile image
RolloMayPatient in reply to DancingEyes63

God bless you.

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