HCC and me

Lathkeen
Lathkeen Member Posts: 3
in Liver Cancer #1

I was diagnosed last August with a 13cm tumor on the outer edge of my left liver.  It was removed, I had a huge scar, it took about 7 weeks to fully recover, and in Zürich, where I had the surgery, they said I would most likely never get it again.

I had absolutely no risk factors.  Even though the cancer recurred very quickly, I still have a completely healthy liver and a completely healthy body.

On November 15th a CT scan discovered a small tumor in the left liver which was radioembolized in December.  Another very tiny tumor was discovered during mapping, and it was embolized then and there.  A CT on April 2nd revealed a tiny amount of regrowth on the tiny tumor, so they TASEd that one week ago.  I will have another CT in 30 days.

In the meantime I very quickly failed on both Sorafenib and Regorafenib (terrible reactions) and am now on immunotherapy (Nivolumab), but have only had one infusion due to the effects of the TASE on ALT and AST, but will probably miss only one dose.

My question is this: please tell me if you are an HCC patient with no risk factors and a healthy liver, and how things are going for you.

 

Thank you.

 

 

 

Comments

  • Wayne C
    Wayne C Member Posts: 2
    #2
    HCC, Portal Vein and Opdivo

     

    I have read with great interest your history. I want to give you a brief history of my treatment. I have had a combined treatment of Y90 Radioembolization with Nivolumab. All my doctors say I am not in the textbooks or in uncharted territory. They really don't know what to offer me. My goal is first tell you my results and success and ask your knowledge and assistance in what you think of my treatment and what my future treatment should be. Let me think you first for your time and knowledge. 

     

     

    I am a 66 years old male,  with no history of cirrhosis, smoking or hepatitis. But, June 2017 I was diagnosed with advanced HCC with PVTT.  The tumor is in the right lobe and was 12.8 cm x 10.2 cm with portal vein tumor involvement and my initial AFP was 2500.  In July, I had Therasphere with Y90. My AFP was 18,000 on September 1 and 25,000 on October 15.

     

    I was started on Sorafenib and took for 1 month which made me very sick. Started Nivolumab Nov. 8. 

    After 8 Nivolumab 240mg treatments, CT was done on Feb. 27, 2018. CT showed shrinkage of the tumor to 4.8cm x 6.0cm. My AFP was 3.2. A month later the AFP is 2.1. There is still portal vein involvement. Initially, there was some question about metastasis to right lung and L4. This has been evaluated by several radiologists and latest there is no metastasis. 

     

    Currently, I am feeling very good. Liver function is normal. I am now looking at the next step. I am continuing the Nivolumab 240 mg every other week. My doctors really don't have an answer. They are considering Y90 again even though my initial response was poor. There has been some consideration of resection. But, they say there is no bridge to that treatment at present. They are also concerned about the toxicity of Y90. I decided not to do the Y90 again.

     

    I saw my oncologist on Thursday and had my 14th treatment with Opdivo (Nivolumab). He says continue Opdivo until there are problems. I too am wondering what the end game is. I am not a surgery candidate. Did you have portal vein issues? 

     

    Anyone else have any comments on portal vein treatment, TASE, or additional treatment?

     

     
  • Limbata
    Limbata Member Posts: 3
    #3
    No treatment after op

    I had a 18x12cm tumour in R lobe of liver - the whole right lobe - removed 2 years ago. I had no prior medical history, am teetotal and don't smoke or have virus usually associated with HCC. I have since had intermittent CT and blood tests .... hospital admin do their best to stop me getting access to anyone who might know what my current situation is! I haven't been put on any meds, or have any other contact with medics. Laughable if it weren't for the fact that we HCC patients have only a 54% five year survival rate. So, I'm still here but definitely feeling like I only have one more of my nine lives left!

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