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

Posted by tinasantos @tinasantos, May 28, 2018

Hi! My dad, who is 78, has already been treated for Hepatitis C (almost 20 years ago) and was diagnosed with this huge mass/tumor in Feb/18 after abdomen pain and loss of appetite. He was referred to a hepatologist who suggested the hepatectomy. The surgery was successful, on March,16th and the mass removed was around 13 pounds. At the end of the surgery, no cancerous cells were found at the biopsy. The doctor recommended another consultation after 3 months.

Before this, in the beginning of this month (about to complete 2 months os surgery) my dad made an appointment to an oncologist (just to check). He asked for some blood tests and triphasic MRI. In the next days my dad started feeling the symptons again (loss of appetite, weakness, fever, shivering, abdominal pains) and returned to the oncologist to show the results. The oncologist said the tumor had came back (multiple small nodules) and that he would not recommend another surgery (because tumor would come back again) and that he was not eligiible for transplant because of his age.

After all this, the oncologist recommended the treatment with Nexavar (Sorafenib) and my dad will start it this week.

I'd like to know how to get Mayo Clinic's doctors second opinion since we're in Brazil and there may be another approachs to this abroad.
Also, it would be great if someone in a similar situation could share info here. I`m really worried because my dad is 78, is weak and depressive because of this, and we don't know how aggressive and effective is Nexavar.

Thanks,
Tina

Interested in more discussions like this? Go to the Liver Cancer Support Group.

digibson | @digibson | May 31, 2022

In reply to @alfonso22 "thank you for asking I am doing well no pain, still working by the end of..." + (show)

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.

Colleen Young, Connect Director | @colleenyoung | Jan 10, 2023

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

parrot53 | @parrot53 | Jan 10, 2023

In reply to @colleenyoung "@mrodriguezc @parrot53 @alfonso22 @digibson, just checking in for an update. How are things going for you..." + (show)

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

alfonso22 | @alfonso22 | Jan 10, 2023

In reply to @colleenyoung "@mrodriguezc @parrot53 @alfonso22 @digibson, just checking in for an update. How are things going for you..." + (show)

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

John Lewallen | @jalewallen74 | Jan 11, 2023

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

John Lewallen | @jalewallen74 | Jan 12, 2023

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.

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