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.

tommyandsandy02 | @tommyandsandy02 | Jun 9 3:20pm

In reply to @tomrennie "@tommyandsandy02 What pain medication is he taking?" + (show)

@tomrennie they put him on 5 mg oxycodone Immediate Release 3 ×'s a day. He was only taking them at night and occasionally bad mornings but today the pain is unrelenting. His oncologist just emailed me and told me I could add miralax and continue the lactulose as directed, bit also said if he gets worse we need to go to the hospital but the problem is that hospital messed a great deal of things up from beginning to discharge when they found the cancer in May. He is terrified of dying in that hospital

Turkey, Volunteer Mentor | @tomrennie | Jun 9 4:44pm

In reply to @tommyandsandy02 "@tomrennie they put him on 5 mg oxycodone Immediate Release 3 ×'s a day. He was..." + (show)

@tommyandsandy02 Do you have an alternative hospital?

tommyandsandy02 | @tommyandsandy02 | Jun 9 5:21pm

No unfortunately the only oncologist is affiliated with this particular hospital so is our primary care.

Turkey, Volunteer Mentor | @tomrennie | Jun 10 9:18am

In reply to @tommyandsandy02 "No unfortunately the only oncologist is affiliated with this particular hospital so is our primary care." + (show)

@tommyandsandy02 How are you folks doing today?

tommyandsandy02 | @tommyandsandy02 | Jun 10 9:55am

In reply to @tomrennie "@tommyandsandy02 How are you folks doing today?" + (show)

@tomrennie no better, no worse. His doctor allowed me to add mira lax and up his dosage of lactulose again. Still in alot ofnpain, still won't eat barely drinks anything, and moans even in his sleep because of pain

Turkey, Volunteer Mentor | @tomrennie | Jun 10 12:05pm

In reply to @tommyandsandy02 "@tomrennie no better, no worse. His doctor allowed me to add mira lax and up his..." + (show)

@tommyandsandy02 Then it is a good thing that you have an oncology appointment tomorrow. Are you folks ready for it?

parrot53 | @parrot53 | Jun 12 8:10am

Perhaps palliative care could be part of the conversation. This may be available and help you manage the pain and stress of the situation.

Turkey, Volunteer Mentor | @tomrennie | Jun 12 2:04pm

In reply to @tommyandsandy02 "@tomrennie no better, no worse. His doctor allowed me to add mira lax and up his..." + (show)

@tommyandsandy02 How did the oncology appointment go yesterday?

tommyandsandy02 | @tommyandsandy02 | Jun 12 2:43pm

In reply to @tomrennie "@tommyandsandy02 How did the oncology appointment go yesterday?" + (show)

@tomrennie well there was 2 paths open to him. Immunotherapy which in his condition could cause no symptoms or could cause inflammation of lungs, kidneys, heart and liver causing hepatitis. Treatment could extend his life by days or months possibly a year but it could shorten it if he gets inflammation in the wrong place, or he could choose pallative/hospice care. With all the could be and might we chose pallative hospice care. Which doctor also nsaid could extend his life by treatingnthe symptoms as they arise. We both decided this was what we were most comfortable with. It will be a progressive decline with treatable symptoms, no hospitals to treat random infections, just peaceful days at home doing what he wants if he wants . He chose quality of life over the possibility of more quality with no guarantee it would even give him that

Turkey, Volunteer Mentor | @tomrennie | Jun 12 4:07pm

In reply to @tommyandsandy02 "@tomrennie well there was 2 paths open to him. Immunotherapy which in his condition could cause..." + (show)

@tommyandsandy02 I understand. You made a decision that works for both of you. I am happy for you both. Please, if you have any other questions, or if I can help in anyway, please don't hesitate to ask. Being a caregiver has its own unique challenges. I felt them in your words. I want to offer the link to our Caregivers group. You might find some comfort from others providing care to a loved one like yourself: https://connect.mayoclinic.org/group/caregivers/