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.

@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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@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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@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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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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@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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@japv2001

I am just starting the treatment for my liver cancer ,it is one tumor only and they are going to do an embolization to kill it.The dr suggested a liver transplant . I insisted on treat the cancer and to put me on the list for transplant. I think the cancer has to be treated first because the wait for a liver donor can take up to 19 months.Any tips?

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I am in the same situation. Will go on the transplant list, there is a six month waiting time for HCC patients before they qualify for exception points, and will have the tumor treated. My team thinks that I should start the process of being listed so if things go awry with treatment I will already be listed for transplant. I agree with them. I think this is the best way forward for me. Hope this helps.

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I had the Y90 treatment how long will it take to see it the tumor is dying i got my 8 week MRI and when down from 3.5 to 3.4 was told that in 3 moths will do another MRI to see how is working I not going to do the transplant as my Doctor wanted me to do this 14 will video talk to my doctor but I feel there is not much information from her about my wellbeing I will also call the hospital to ask for a different doctor. so far I am doing good Thanks God but still worrying about my liver cancer any information will help thank you

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@alfonso22

I had the Y90 treatment how long will it take to see it the tumor is dying i got my 8 week MRI and when down from 3.5 to 3.4 was told that in 3 moths will do another MRI to see how is working I not going to do the transplant as my Doctor wanted me to do this 14 will video talk to my doctor but I feel there is not much information from her about my wellbeing I will also call the hospital to ask for a different doctor. so far I am doing good Thanks God but still worrying about my liver cancer any information will help thank you

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Alfonso, it is important to have a good rapport with your doctor, someone who can work with as a team. I look forward to hearing what you learn about the tumour shrinkage in 3 months. Until then, keep an open mind.

You said that transplant has been mentioned as an option for you, but it is not a treatment choice you wish to do. May I ask why? Is a second Y90 treatment possible for you?

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@colleenyoung

Alfonso, it is important to have a good rapport with your doctor, someone who can work with as a team. I look forward to hearing what you learn about the tumour shrinkage in 3 months. Until then, keep an open mind.

You said that transplant has been mentioned as an option for you, but it is not a treatment choice you wish to do. May I ask why? Is a second Y90 treatment possible for you?

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I have not good comunicación with my cancer doctor I do have a video call this Thursday 14 with her I will ask more questions I do not want to do the transplant not getting a good feeling about it Y90 second treatment I am not sure will ask this week thank you

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@alfonso22

I have not good comunicación with my cancer doctor I do have a video call this Thursday 14 with her I will ask more questions I do not want to do the transplant not getting a good feeling about it Y90 second treatment I am not sure will ask this week thank you

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How are you doing, @alfonso22 ?

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@colleenyoung

How are you doing, @alfonso22 ?

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thank you for asking I am doing well no pain, still working by the end of June will have another MRI to see if the tumor is dying or what will the cancer do to my body 🙁 sometimes I just wonder and worry but I accept the cancer and will fight it also I know is what ever God plans have for myself. sometimes I do break and go to my dark side but for a short time 🙁 with faith positive acttitude I hope I have a few years to enjoy life.. thank you for asking about my wellness that realy helps Have a great short week

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@alfonso22

thank you for asking I am doing well no pain, still working by the end of June will have another MRI to see if the tumor is dying or what will the cancer do to my body 🙁 sometimes I just wonder and worry but I accept the cancer and will fight it also I know is what ever God plans have for myself. sometimes I do break and go to my dark side but for a short time 🙁 with faith positive acttitude I hope I have a few years to enjoy life.. thank you for asking about my wellness that realy helps Have a great short week

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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.

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