Pembrolizumab

[Melita17]

Has anyone heard of Pembrolizumab and if so has it saved any liver cancer patients' lives.

[Hidden]

Good find, I have been reading up on this and see that in Dec 2017 treatment of advanced liver cancer is still under investigation, so it maybe a while before it's realised in the States for general use.

It looks like is has been approved for use in the UK on patients with certain lung cancers. The cost around £84,000 per patient at its full list price is rather a lot of money. However, I can't find any mention of it being used for liver cancer: england.nhs.uk/2018/06/nhs-...

It would appear that this drug is only for certain types of liver cancer, and that it could cause acute liver failure in those patients with the wrong form of cancer. I feel a lot more research is needed on both sides of the pond before this drug is licensed: journals.lww.com/md-journal...

[Melita17 in reply to Hidden]

Thank you Richard64. Unfortunately, by the time they find the correct one my brother's liver cancer will have taken him. He has about 10 months to live and his oncologist has given up on him telling him that there is no point seeing him anymore because there is nothing more he can do for him, in fact he didn't even follow up how the Sorafenib had affected my brother's health with the side effects being the worst thing he has ever experienced.

[GrandmaDylan in reply to Melita17]

I'm so sorry to hear about the poor treatment your brother got from his oncologist. It must be very demoralizing for him to just dropped like that. Take care. Deb

[DeniB]

I have just completed a two year trial of Pembrolizumab in the uk. It has saved my life for now. I am now stable and still shrinking. My tumours (liver with mets to lungs and lymph) have shrunk from 212mm to 116mm (Various tumour diameters added together). Minimal side effects of aching joints,heartburn and itchy hands.

What they are saying about Pembrolizumab/Immunotherapy-

In 20% of patients it doesn't work.

In 20% of patients it will produce an enormous autoimmune response, you may achieve ned but may also have long term issues in other organs because of the overstimulated immune response.

In 60% of patients a continued steady shrinkage to stable.

You may not need 2yrs of treatment if it works. The effect continues to work after stopping the drug. The effect may last 18+ mths.

I am hoping it will be licensed by the time I need it again. There is a challenge with Nivolumab at the moment re being able to have the drug again and not just for two years.

[Melita17 in reply to DeniB]

Thank you DeniB. Can you tell me if you have/had liver cancer and if your time was limited when you went on the above drug and who suggested that you go on, your doctor or oncologist? Also, does Nivolumab have the same desired effect? Thanks for your time.

[DeniB in reply to Melita17]

I was diagnosed in October 2014 with a 9x11cm liver tumour. Six months after a resection I had more liver tumours, and mets to lungs and lymph ie advanced liver cancer and given 6mths worse case scenario. I insisted on bring treated and had TACE twice and a year of Sorafenib. When the tumours started to grow again in 2016 I asked for nivolumab as the only available immunotherapy drug at the time. I was told it's not licensed for liver, no. As I was persistent - I've always been a "difficult" patient in choosing to direct my treatment, my Oncologist agreed to go and look at what trials where coming up. It was purely right place right time as the trial started in September 2016. I still have advanced liver cancer, am still classed as stage 4 but it is stable and not progressing.

Pembrolizumab is very similar to nivolumab.maybe a second generation immunotherapy drug, different drug company. The problem is there are no immunotherapy drugs approved for liver yet. I'm not sure if you could get either prescribed privately as it's not approved yet.

Other options - I would ask for a second opinion and a new Oncologist don't believe the date it's based on stats , they don't know. Look for a trial. Approach Care Oncology Clinic in London (they will consult online) they are doing good things with off label drugs. Read The Cancer Whisperer by Sophie Sabbage. If I think of anything else I'll add another comment xx

[Melita17 in reply to DeniB]

Thank you for your quick response DeniB. I notice that you took Sorafenib. My brother took this for 2 weeks but the side effects were horrendous (see previous comments). In fact at one stage he couldn't even walk as he lost the use of his legs, he now walks very slowly and is always cold. He has actually said that he would rather die than take Sorfenib again. Did you get any side effects with this tablet?

[DeniB in reply to Melita17]

I had horrific rash. They took me off it for ten days then started again at lower dose of 600mg I think. I had and still have joint pain, and the foot pain was uncomfortable, but keeping moving is key. If you get a trial ( see below) gut health is important for immunotherapy success. I take Symprove and Dr Mercola probiotics. Vits C, D and curcumin. Juice carrots,apple,ginger. Eat more plants, less sugar

[DeniB in reply to DeniB]

There is a clinical trial for nivolumab for liver cancer - trial number NCT01658878.

Recruiting ends September 2018 - go to nhs clinical trials and enter number. For speed approach the sites running the trial yourself.

[Melita17 in reply to DeniB]

DeniB, I've been into the NHS website but I cannot find that trial number.

[DeniB in reply to Melita17]

I put liver cancer in the search and scrolled down. I'll check it's copied ok

[DeniB in reply to DeniB]

Just put that number in Google and it'll come up. It's Clinicaltrials.gov

[Melita17 in reply to DeniB]

Thanks Deni. To put you in the picture, I visited my brother for the first time in weeks today and his weight loss is very prominent with sunken eyes etc. In fact he had a nose bleed for the second time today which he had never experienced before. He is walking better albeit slowly but at least he's on his feet. The hospital are the ones who have actually told my brother that his cancer is too advanced with cancer that a liver transplant is out of the question as is a clinical trial. He has the cancer in his nymph lodes at the base of his stomach too but the morphine tablets have reduced the pain considerably, for how long I don't know. His nurse who only comes once a week is on holiday soon and the hospital is trying their best to find a replacement but they are so short of staff that I fear he'll be left to his on devices until she gets back. I'm keeping my fingers crossed that someone will do something for him because he doesn't fight his corner, very easy going (which is not always a good thing!) and any suggestion on my part to get second opinions, go back to the doc etc will just look like interfering. I will let you know what's happening and I'm really glad that you have come out of this better than my brother has, you obviously have a fighting spirit! Bye for now.