Hepatocellular Carcinoma / Liver Cancer

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 Cancer group.

Hi @malaysiamiri and welcome to Connect.
I had cirrhosis and there were malignant lesions in my liver. I really never thought about what stage they were but I assume it must have been an early stage because they eliminated them with radio ablation and the following year I had a liver transplant.

Have your doctors indicated what the best treatment will be for your lesions? If they are still at a stage where they can be treated with ablation you can probably return home the same day. My ablation occurred late in the day and the lesions were on the edge of my liver making for a more difficult ablation so I did spend one night in the hospital. i did have severe pains the morning after I came home and was told it was due to having to inject fluid to separate my liver from other organs so nothing else would be affected. The pains were gone in one day.
Are your lesions connected with cirrhosis also?
JK

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@malaysiamiri

Ovarian cancer been treated past 3 years
I wonder how are they treated for the liver lesions

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@malaysiamiri, am I understanding that you have ovarian cancer that has now metastacized to your liver?

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@contentandwell

@gmc454mnazl35ashma I don’t recall exactly, it took me by such surprise, I was reeling. I did know that the only option was getting a liver transplant, so that would indicate it was severe..
My cirrhosis was diagnosed in March, 2015. I had a transplant in September 2016.
It took almost a year and a half to get a diagnosis despite having what I discovered were very typical symptoms of cirrhosis.
JK

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Jk are you doing better? Since the transplant have you had anymore problems. A friend of mines had a liver transplant and hes been sick ever since. I have to go to the cancer clinic to see if mines are benign or cancerous but you would think with the labs they should be able to tell thar.

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@techi

Jk are you doing better? Since the transplant have you had anymore problems. A friend of mines had a liver transplant and hes been sick ever since. I have to go to the cancer clinic to see if mines are benign or cancerous but you would think with the labs they should be able to tell thar.

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@techi My transplant was in September 2016 and I have been doing great ever since except for a couple of unrelated issues.

I hope your lab results come back good, and that the lesions are benign or that they can be as easily eliminated as mine were.
JK

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@colleenyoung

Hi @gene1234, I'm bringing you into this more recent discussion about liver cancer. From reading your other posts, I see that your wife has been prescribed a recently approved drug called Lenvima (lenvatinib). Thank goodness there is no a treatment option when surgery isn't possible. How long has your wife been taking the drug? How is she doing? How are YOU doing?

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I have just begun taking Lenvima for my liver cancer. I have had two small lesions removed in Jan 2018 and a spot removed in April of 2017. A new 2mm spot was found about a month ago. The problem with transplant surgery is they my liver is too healthy at this time. Any comments or suggestions? This drug does some weird stuff to you

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@bobhuddleston

I have just begun taking Lenvima for my liver cancer. I have had two small lesions removed in Jan 2018 and a spot removed in April of 2017. A new 2mm spot was found about a month ago. The problem with transplant surgery is they my liver is too healthy at this time. Any comments or suggestions? This drug does some weird stuff to you

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Hi Bob, I'm bringing @m1b1r9 and @gene1234 into this discussion in the hopes that they can share their experiences with the drug Lenvima (lenvatinib).

@bobhuddleston, what side effects have you been experiencing?

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@colleenyoung

Hi Bob, I'm bringing @m1b1r9 and @gene1234 into this discussion in the hopes that they can share their experiences with the drug Lenvima (lenvatinib).

@bobhuddleston, what side effects have you been experiencing?

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I have been experiencing some weight loss, about 10 lbs, worst thing is the diharea, and it appears to have affected my thyroid gland, causing lack of energy and appetite loss. My tongue and mouth have become extremely sensitive to spicy foods and soda. Just looking for some support, I am not a person to give up, looking for answers, please help if you can

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@bobhuddleston

I have been experiencing some weight loss, about 10 lbs, worst thing is the diharea, and it appears to have affected my thyroid gland, causing lack of energy and appetite loss. My tongue and mouth have become extremely sensitive to spicy foods and soda. Just looking for some support, I am not a person to give up, looking for answers, please help if you can

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@bobhuddleston Have you reported these changes to your doctor? They may, or may not, be reactions to the drugs you are taking. The diarrhea and wait loss are concerning. What does your doctor say? What does he/she suggest you do?

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Tina, am sorry to hear about your Dad. My Father passed away from liver cancer over 20 years ago, so this is touches my heart. In addition, my daughter was very sick over the holiday with dark urine, weak, cough, low grade fever. She went to emergency room and they ran bloodwork and urine test. She had low potassium level and magnesium. However, her liver profile was abnormal as well. Her AST was 178 and ALT was 78, Albumin low 3.3 Anion Gap high at 12 . Alkaline Phos. high at 284 Billirubin was normal. Urine showed Urobilinogen high at 1. She was given magnesium and potassium intravenously but sent home because she does not have insurance. She was not told to follow up with a doctor. I am concerned that she has liver disease….. She is 36. Is there still an online "ask a nurse/dr for mayo clinic? Should I follow up on her labs and be concerned. Aren't these abnormal?

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@phylliserin

Tina, am sorry to hear about your Dad. My Father passed away from liver cancer over 20 years ago, so this is touches my heart. In addition, my daughter was very sick over the holiday with dark urine, weak, cough, low grade fever. She went to emergency room and they ran bloodwork and urine test. She had low potassium level and magnesium. However, her liver profile was abnormal as well. Her AST was 178 and ALT was 78, Albumin low 3.3 Anion Gap high at 12 . Alkaline Phos. high at 284 Billirubin was normal. Urine showed Urobilinogen high at 1. She was given magnesium and potassium intravenously but sent home because she does not have insurance. She was not told to follow up with a doctor. I am concerned that she has liver disease….. She is 36. Is there still an online "ask a nurse/dr for mayo clinic? Should I follow up on her labs and be concerned. Aren't these abnormal?

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@phylliserin Welcome to Connect. I am really sorry to hear about your daughter. The AST and ALT results do sound high.

If a number of things were out of range I think it would be cause for concern. Is she at risk for liver problems? This link from Mayo tells causes and symptoms. I had liver disease — cirrhosis. Mine was caused by fatty liver. Most people with fatty liver are overweight, which I was, but some people are not, it's just their diet that causes it. Other causes are mentioned in the Mayo article.
I didn't think a hospital could send a sick person home for lack of insurance. Does she have Medicaid? It does sound as if she should have some medical attention. I thought pretty much everyone was insured these days through ACA if they had no insurance other than that. I hope you are able to get her the attention she needs, I will definitely be interested in hearing what the doctor says.
JK

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@phylliserin

Tina, am sorry to hear about your Dad. My Father passed away from liver cancer over 20 years ago, so this is touches my heart. In addition, my daughter was very sick over the holiday with dark urine, weak, cough, low grade fever. She went to emergency room and they ran bloodwork and urine test. She had low potassium level and magnesium. However, her liver profile was abnormal as well. Her AST was 178 and ALT was 78, Albumin low 3.3 Anion Gap high at 12 . Alkaline Phos. high at 284 Billirubin was normal. Urine showed Urobilinogen high at 1. She was given magnesium and potassium intravenously but sent home because she does not have insurance. She was not told to follow up with a doctor. I am concerned that she has liver disease….. She is 36. Is there still an online "ask a nurse/dr for mayo clinic? Should I follow up on her labs and be concerned. Aren't these abnormal?

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Hi @phylliserin, If your daughter is a patient of Mayo Clinic, she can submit questions about her labs online through the patient portal, called Patient Online Services https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

Mayo Clinic also has a Symptom Checker that you might find helpful: https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075
Here is more information about Liver Function Tests and normal ranges for comparison https://www.mayoclinic.org/tests-procedures/liver-function-tests/about/pac-20394595

It would seem that your instincts are correct and that she should book a follow-up with a doctor or specialist. Is there a university or teaching hospital that your daughter could go to?

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@colleenyoung

Hi @phylliserin, If your daughter is a patient of Mayo Clinic, she can submit questions about her labs online through the patient portal, called Patient Online Services https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

Mayo Clinic also has a Symptom Checker that you might find helpful: https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075
Here is more information about Liver Function Tests and normal ranges for comparison https://www.mayoclinic.org/tests-procedures/liver-function-tests/about/pac-20394595

It would seem that your instincts are correct and that she should book a follow-up with a doctor or specialist. Is there a university or teaching hospital that your daughter could go to?

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thank you so much for your reply, Colleen. I will follow up on the symptom checker and the normal ranges. There is a university, but I am not sure what they can do for her. We are currently looking into some indigent clinics. Again, thank you for the reply.

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