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Anyone with Fibrolamellar HCC?

AleAlejandro98
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Hi there,

My name is Alejandro and I am 20 years old, and Injust want to meet people with the same type of cancer.

I just say that I’m dealing with this cancer from a year ago, I have been diagnosed at primary stage 4. Main tumor on the right lobul of my liver and spread out to other one on the liver and both renal glands, oesophagus and between oesophagus and the stomach another oner.

I started with FOLFOX treatment and it didn’t work, now I using Intron A and 5-FU. I was I very active and athletic, ok my contry I was a learner for very long time of Mixed Martials Arts. Nowadays, I’m not able to do such as sport as I used to it but, I am improving my patient, concentration, and strength to keep fighting this horrible deseas with the keys learnt from MMA.

Best wishes for everyone! 

Regards,

 

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    Hello Alejandro, 

    A big welcome to our forum and thank you for sharing your story. I am sorry you have been diagnosed with fibrolamellar HCC  at such a young age and that the FOLFOX treatment didn't work for you. 

    I hope you will manage to connect with some of our members who have been affected by this rare type of liver cancer. I did a little search on our forum and found this thread  which might of interest to you. Unfortunately it is from 3 years ago but [@Mumof2]‍  mentioned at the time that she was diagnosed 7 years ago and I hope she still checks the forum and that she will be along to share her experience with you. She mentioned on that thread a couple of useful resources for you to look at such as the Fibrolamellar Cancer Foundation and seems to be a great person for you to connect with. 

    It must have been great fun to do Mixed Martial Arts and even though you are not currently able to practise that sport anymore, as you say it's given you valuable tools to help you cope on a daily basis. 

    Should you ever need to talk to one of our cancer nurses about this, feel free to ring them on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Offline in reply to Moderator Lucie

    Hello...I've just 're registered on this forum. I was mumof2.I'm still doing well Alejandro so let me know if you want to chat. 

    Here's a few links for anyone else with Fibrolamellar who may come across this post. 

    There is an active Facebook group called Fibrolamellars of the world unite.

    The Fibrolamellar foundation in the USA is an excellent source of information www.fibrofoundation.org

    The Fibrolamellar Registry is for patients or caregivers to fill in a surgery on their treatment www.fibroregistry.org

    Best wishes 

    Xx

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