spazureCaregiver1 year ago

I am so sorry to hear this.

Absolutely get a second opinion. While it's unlikely they're wrong about the presence of the cancer, some doctors do have different opinions about what treatment options are available.

I don't personally know any currently running clinical trials, but if you're in the US you can try searching at clinicaltrials.gov/

Valentina_22Patient in reply to spazure1 year ago

Thank you so much for your response ! I’m in the uk but would gladly travel anywhere in the world for a clinical trial I will definitely check out the link you sent me thank you! I’m currently battling with my doctors to just give me a copy of my diagnosis and records in order for me to even get a second opinion, like you said it will proberly be the same but if there is even 1 percent change that a different doctor will give me some more treatment I will take it!! Thank you so much

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nash21 year ago

Hi Valentina

That is a diagnosis we all live in fear of. Here is a link to a trial finder that will ask you some questions and give you a list of potential trials that you might consider. It is going to ask where you live as the best bet is if you are nearby but answer any in the how far question to get the entire list. There is quite a bit of research being done on HCC but the details matter. Good luck.

fattyliverfoundation.org/cl...

Wayne

Valentina_22Patient in reply to nash21 year ago

Hello NashThank you so much for your response, oh I will definitely check it out that is most helpful! I have requested that group also! Your are very kind thank you very much for suggesting this!

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nash2 in reply to Valentina_221 year ago

I just looked at your profile and see you are in the UK. I don't know if that search extends to Europe but if you put in a US zipcode you can find out about what trials are going on and many are international so may have study participants there.

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Valentina_22Patient in reply to nash21 year ago

Hello can I ask if there is a specific website I can look out that is very popular for clinical trials? I would travel if I could find one that is suitable for my particular cancer and would just like to browse and see what’s available

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nash2 in reply to Valentina_221 year ago

All of our contacts are US but you might try the British Liver Trust website. They are a sister foundation and may be able to help you in your search.

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liverlover0Patient1 year ago

HelloI am so sorry about your news. I am in a similar boat. I am in FL and was going to Moffit and just recently got a second opinion at MD Anderson in Houston, TX. They have a trial called stat-3 that I just started a week ago. Immunotherapy didn’t do what we wanted it to and that’s why I got the second opinion and went the trial rout. I’ve had Dr tell me it’s not possible to cure but I do still believe it’s possible. I think that’s important to keep the hope. They can not predict our future, only god knows the outcome. I also read a lot of books that give me hope. Check out radical remission. It’s a great uplifting book.

Let me know if I can help you further with any trial questions.

Praying for you.

Valentina_22Patient in reply to liverlover01 year ago

Hello thank you so much for your lovely message! Thats the only thing I am hoping for is a miracle of some kind some sort of trial hearing the doctors say over and over that there is no trials that there is no cure just breaks your heart all over again. I will definitely check Out the book you recommended as I am trying my best to be postive! That’s what my family tell me too that sometimes miracles do happen and doctors cannot explain it so to have hope. Please do let me know how your trial goes!! I hope it works for you and hope you are doing okay! I’m praying in the time that I have that they do create a trial that cures ut or prolongs your life for a very long time! X

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Valentina_22Patient in reply to liverlover01 year ago

Sorry also I am from the uk but would love to get involved with any sort of possible liver trial! How do I search it from the uk are there any major sites I can look at and see if they are suitable for me. I would travel in a heartbeat if there is any I am suitable for

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AndreaWilson_FounderPartner in reply to Valentina_221 year ago

Hello Valentina,

I agree with everyone. 1) Get a second opinion. 2) Look at clinical trials. Our custom tool is designed for the US only (so I'm not linking to it)

but at clinicaltrials.gov

you can specify the country and disease. Without knowing much more about your situation, your personal values, ability to travel, etc., I found 22 HCC clinical trials (all phases) currently recruiting in the UK. Please let me know if you need help. It's not an easy tool to navigate. Unfortunately, unless the doctor is an HCC specialist, they may not know about the latest research studies.

~Andrea

andrea@bluefaery.org

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Valentina_22Patient in reply to AndreaWilson_Founder1 year ago

Hello AndreaThank you so much for your message that was very kind of you to inform me about the clinical trials we have in the uk. I am willing to go anywhere in the world and look everywhere for some sort of trial or help.

I am hoping to get some of my records for the doctor as I was unable to get a second opinion without having my records. The one doctor I did speak to offered me immunotherapy. I will continue to look for a second opinion once I can access my medical records. At this rate the only hope I have is for a clinical trial that may help further, or praying for a miracle and changing my diet and training myself to be positive which sounds insane I know.

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Sewingnanny12 months ago

Praying God will lead you in the direction needed. I know that MD Anderson in Houston Texas takes patients from all over the world. I would contact them via phone or internet to see if you can get appointment without your medical records.

Valentina_22Patient in reply to Sewingnanny12 months ago

Thank you 🙏 very much I will defiantly look him up!

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RolloMayPatient5 months ago

Hi. I am sorry to hear this. To give you hope, my mother -in-law who ultimately died of metastatic pancreatic CA died 7 years ago. The first two years of her treatment went well, then once it metastasized her Dr's told her "nothing they could do". She was devastated. I had been researching this the whole time and a week after she was told this, I found a treatment on the internet. She ended up living another two years.

Have you gotten a second opinion as to your lungs being untreatabble?

Valentina_22Patient in reply to RolloMay5 months ago

Hii thank you for your message I am currently having immunotherapy every 2 weeks which is currently keeping me stable , although I am still praying and hoping for a miracle that some new treatment comes out or that I respond to the therapy and get some shrinkage. Glad to hear your mother in law lived an extra two years.

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