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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.

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mrodriguezc | @mrodriguezc | Mar 21, 2021
In reply to @mrodriguezc "Hola, me interesa saber por cuanto tiempo le dejaron el le va ti nimio, yo estoy..." + (show)
Profile picture for mrodriguezc @mrodriguezc

Hola, me interesa saber por cuanto tiempo le dejaron el le va ti nimio, yo estoy comenzando con este tratamiento para hepatocarcinoma de hígado. Que posibilidades tenemos de mejorar con este medicamento?.gracias.

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Lenvatinib

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mrodriguezc | @mrodriguezc | Mar 21, 2021
In reply to @colleenyoung "Hi @gene1234, I'm bringing you into this more recent discussion about liver cancer. From reading your..." + (show)
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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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Hola, me interesa saber por cuanto tiempo le dejaron el le va ti nimio, yo estoy comenzando con este tratamiento para hepatocarcinoma de hígado. Que posibilidades tenemos de mejorar con este medicamento?.gracias.

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Colleen Young, Connect Director | @colleenyoung | Nov 17, 2020
In reply to @mrodriguezc "En junio 2020,se sugieren volver a operar ahora o terapia de Y-90" + (show)
Profile picture for mrodriguezc @mrodriguezc

En junio 2020,se sugieren volver a operar ahora o terapia de Y-90

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@mrodriguezc Veo en otras publicaciones que está buscando una segunda opinión y considerando Mayo Clinic. Para obtener más información, visite https://www.mayoclinic.org/es-es

¿Ya se comunicó con Mayo Clinic?

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mrodriguezc | @mrodriguezc | Nov 16, 2020
In reply to @colleenyoung "Bienvenido, @mrodriguezc Estoy usando el traductor de Google, por lo que es posible que la traducción..." + (show)
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Bienvenido, @mrodriguezc
Estoy usando el traductor de Google, por lo que es posible que la traducción al español no sea completamente precisa.

¿Cuándo le diagnosticaron cáncer de hígado? ¿Qué tratamientos estás recibiendo?

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En junio 2020,se sugieren volver a operar ahora o terapia de Y-90

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1 reply
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Colleen Young, Connect Director | @colleenyoung | Nov 16, 2020
In reply to @mrodriguezc "Tengo hepatocarcinoma alguien me puede ayudar" + (show)
Profile picture for mrodriguezc @mrodriguezc

Tengo hepatocarcinoma alguien me puede ayudar

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Bienvenido, @mrodriguezc
Estoy usando el traductor de Google, por lo que es posible que la traducción al español no sea completamente precisa.

¿Cuándo le diagnosticaron cáncer de hígado? ¿Qué tratamientos estás recibiendo?

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1 reply
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mrodriguezc | @mrodriguezc | Nov 12, 2020

Tengo hepatocarcinoma alguien me puede ayudar

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JK | @contentandwell | Dec 6, 2019
In reply to @phylliserin "Thank you, JK. She is at risk because she has a bad diet and of alcoholism...." + (show)
Profile picture for phylliserin @phylliserin

Thank you, JK. She is at risk because she has a bad diet and of alcoholism. She is not terribly overweight however. I think they just sent her home assuming that her labs for potassium and magnesium were all that were of concern. I think that it was oversight and that they did not consider the liver profile as a factor or did not want to because of the lack of insurance. It is sad but true.

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@phylliserin I went almost a year and a half before my cirrhosis was diagnosed despite having HE *hepatic encephalopathy) episodes, decreasing platelet counts, shaking hands, and other symptoms but I was never jaundiced and my AST and ALT levels were not hugely out of range, just slightly.
Before cirrhosis occurs there are other stages of liver problems that are reversible. Hopefully if she does have liver problems, and with those AST and ALT results it sounds as if she might, she will get diagnosed and on track to regain her health. I am still not understanding that she can be turned away for lack of money. I know that can be true for transplants, they are so costly as are the drugs afterward, but to get diagnosed? That just doesn't seem right, particularly since if she gets a diagnosis she could possibly be treated before things get worse. Medicaid will not pay?
JK

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phylliserin | @phylliserin | Dec 4, 2019
In reply to @contentandwell "@phylliserin Welcome to Connect. I am really sorry to hear about your daughter. The AST and..." + (show)
Profile picture for JK @contentandwell

@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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Thank you, JK. She is at risk because she has a bad diet and of alcoholism. She is not terribly overweight however. I think they just sent her home assuming that her labs for potassium and magnesium were all that were of concern. I think that it was oversight and that they did not consider the liver profile as a factor or did not want to because of the lack of insurance. It is sad but true.

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1 reply
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phylliserin | @phylliserin | Dec 4, 2019
In reply to @colleenyoung "Hi @phylliserin, If your daughter is a patient of Mayo Clinic, she can submit questions about..." + (show)
Profile picture for Colleen Young, Connect Director @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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Colleen Young, Connect Director | @colleenyoung | Dec 3, 2019
In reply to @phylliserin "Tina, am sorry to hear about your Dad. My Father passed away from liver cancer over..." + (show)
Profile picture for phylliserin @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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