Anyone with Hepatocellular Carcinoma (Liver Cancer) want to share?

Hang in there Alfonoso. I've had y90 3 times now and three times its killed the tumor. They are still there but are dead. I can't have a transplant but will do y90 every time they need to.

@mrodriguezc @parrot53 @alfonso22 @digibson, just checking in for an update. How are things going for you as we start a new year?

Hello Colleen,
Happy New Year to you too. Our family is busy recovering from Hurricane Ian. Our son’s family is with us until they can repair their flood damaged home. We are all safe and well. I am scheduled to get back to Mayo in February to get some more information about a possible FMD diagnosis. Not sure if this will affect my eligibility for liver transplant or not. My team says they will be keeping an eye on neurology test results. Is there anyone else out there with a similar issue?
Hoping you all are well and thank you for your support.
Susan

thank you for checking sorry for not being here in a while I am very thankful for all the support of this group after my Y90 radiation I did TACE chemo to the tumor same way like the Y90 it got me down lots of pain and Chemo is something else this Tuesday 17 I have MRI to see if tumor is gone or still on my liver. still positive and living life to its fullness I know God has plans for me. I just notice there is lots of people with cancer or may be just me. all this help me a lot thank you again btw my cat has diabetes now so I am taking care of with his diet and insulin, not sure if I said but I am not going to do the liver transplant. I am ok with that for my self. God bless you all

Hello Tina. I am 74 and have Bile Duct Cancer that spread to my liver. i also have loss of appetite, weakness, and "feel cold" all of the time. I also have small nodules of cancer and have 3 lesions in my liver. These multiple nodules make my cancer not operable. After PET/CT Scans my oncologist placed me on an aggressive chemotherapy treatment starting with Paclitaxel which I tolerated well with the side effects of loss of appetite, "foggy" chemo brain, fatigue, weakness and the need to drink 2 quarts of water a day to keep the kidneys working. The side effects lasted 3 days. I received 3 treatments a month. After a month he added Carboplatin. Since I had no negative reactions he went more aggressive by switching the chemo to Cisplatin and Gemcitabine. Same side effects only stronger. After several more months blood work showed the Cisplatin was too hard on my kidneys and he deleted it from my chemo treatment by staying with Gemcitabine only. During this time a new immunotherapy drug Imfinzi became available and he stopped all chemo and now I am only infused once a month with Imfinzi. The side effects are the same only not as strong. My latest PET/CT Scan shows the cancer is not spreading or growing. I also have my periods of depression. My research shows Sorafenib to be a First Line treatment for cancer. It is effective in preventing spreading of cancer as a single agent or combined with cis+gem or oxaliplatin. Of course your medical team will guide you on your journey. I recommend Mayo Clinic in Rochester USA. Feel free to contact me on this forum any time. John

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Colleen. Thanks for your post about TACE chemo treatment. As a patient with Bile Duct and Liver Cancer I value information about the treatments other patients are receiving. I am currently receiving Imfinzi immunotherapy and my recent PET/CRT scan shows my cancer has not spread. The info about Y90 radiation treatment is also a valuable tool to add to my tool chest. Also thanks for the information about FDM. May you be blessed and healed on your journey.

My husband is 68. He was healthy and his blood counts were great. Last summer he developed a back rash that just wouldnt go away. We treated it with benedryl thinking it was poison oak but it wouldn't go away. He had a scheduled appointment with our primary care doctor and he put him on short course of steroids, the rash didn't go away but would.come and go. He went back for his 6 month appointment in May and his liver enzymes were suddenly high his wbc was high, his neutrophils were high, his red blood cells were low, he had lost 10 pounds and he had a severe back pain. He was scheduled for a followup the next week but the day of his appointment he Bagan getting nauseous, had a hot throat and pain became severe so we went to er thinking it was possible gallbladder. They found his luver had defects and possible cancer on ct scan. They admitted him and did an mri and found hepatocellular carcinoma and classed it as c. The right lobe of his liver is almost total mass. It has 13.2×12.3 mass, left libe has a medium size mass, several small masses and tumors had infiltrated his hepatic ports either totally blocking them or partially blocking. Thankfully so far his bile duct was not invovolved and dilation, henis is in alot of pain, continues to lose weight , and has started to accumulate ammonia. When we were released from the hospital may 16th we were given a follow up appointment with our primary care and a consultation with the oncologist for June 11th. Keep on mind this means that he is not an established patient with oncologist yet but had active referral to the office. Oncologist met him at the hospital told my husband there was no surgical option that it is in fact terminal. Oncologist wanted biopsy but it was not scheduled by discharging hospitalist, I had to get it scheduled by going through our primary care to get in touch with oncologist ,because oncologist was not listed in my husbands healthcare provider list yet, to finally put order in so he finally got biopsy done June 2nd, it is primary liver cancer. We already knew it was hepatocellular carcinoma class 3 by MRI and tumor marker being close to 13,000. I was given no referral for nutritionist so I had to research thoroughly what was best for him to eat and how often. About 4 days after discharge from hospital he was in severe pain so much he needed my help rolling over and neither of us could sleep, so i called our primary care doctor and he prescribed pain pills. When he started getting slow reaction time and slightly lethargic, I researched why so I called primary care doctor to call in the lactulose he needed. I think he has decided that he wants to forgo the treatment options that will (or could be) offered to him he want to maintain quality of life rather than possible longer quantity with possibility of making him sicker an the real possibility of it shortening his life. We are both on social security, I am disabled with very real at times serious medical problems but we only have each other. We don't even have life insurance and we are barely social security check to social security check making it. We have no savings so it feels like the world is collapsing around. People we thought were friends even family we thought would be there for us wont even give 5$ on our go fund me. I actually got an ugly text from his ex wife that I should take out the part of the go fund me about his cremation cost because some people don't want to be reading that because some people want to give him a fighting chance that including that line was disrespectful. She is a nurse, she knows this cancer is terminal at this stage whether he takes treatments or not. She said she would make sure nobody she knows would support a go fund me if it included cost of his cremation, but she would be happy to help pay for the treatments. He divorced this woman in 1999. I have been with him since may 2000 married to him since August of 2002. They don't even speak but people in their old circle still keep in touch with both him and her and filled her in. All of it is emotionally draining, physically draining, financially demanding, and the absolute hardest thing to have to go through alone, especially when getting attacked for his choices but since I want his environment is kept calm I take those hits too. I live him, I would do anything for him, but cancer is horrible. I wish I could take it away from him magically, I would take this on for him if I could so I do everything I can to keep him as long as I have him.

@tommyandsandy02 Hi and welcome to Mayo Connect. Wow, that's a lot to digest and deal with. I hope you folks got some sleep last night? I don't have a Hepatocellular Carcinoma, but I do have pancreatic cancer that has spread to my liver. My liver has more problems than anywhere else that my cancer has spread. I see a Hepatologist regularly. We met two weeks ago. I have learned a lot from her. Here are my suggestions. Go to the Oncology appointment. See what he has to say. Find out what his treatment options are. Then, make an informed decision on what you folks want to choose next. It could be get a 2nd opinion. I have learned one thing on my cancer journey. To have a quality of life, one must have life. To me, life is worth fighting for. But, you have to learn how to fight. This starts with the Oncology appointment. Also, folks here can help with their experiences. When I was diagnosed in 8/22, my future didn't look promising. I am still here. I can honestly say that I am happy to wake up every day. You are apparently very resourceful by learning all that you have learned already. I salute you for that. Why not keep going until the Oncology appointment, then take things from there? I personally offer you two things:
1. Help you become as educated as possible about Hepatocellular carcinomas prior to your June 11th appointment. To start, here is a link to Mayo's website on this type of cancer. It has a wealth of information. I want to point out the Diagnosis & Treatment tab. There are treatment options: https://www.mayoclinic.org/diseases-conditions/hepatocellular-carcinoma/symptoms-causes/syc-20589101
2. Help you prepare questions for your Oncology appointment. It is critical that you make the most of that appointment.
How is your husband feeling today? How are you feeling?

@tomrennie he has been in alot of pain yesterday and today. The lactulose is not working right now. Sleep is getting more difficult, good nights are few and far between. I will look up the article you suggested I appreciate the resources that this has provided as resources are in short supply. I thank you for your response, I am hoping to figure out how to relieve his immense pain that he is in right now. His pain medicine helps usually but this time he is even moaning in his sleep.