Recurrent & metastasised oesophageal cancer: clinic trials/private care?

Hi and welcome to the online community

I'm sorry to read that your friend's cancer has returned and has been found to have spread to his liver. It must be a very worrying time for you both.

I'm not a member of this group but I noticed that your post had gone unanswered. It may be that no one in this group has been on a trial or just that the person with the right experience hasn't seen it yet. By replying to you it will bump it back to the top of the page where hopefully it'll be seen by someone with the experience you need.

While you're waiting for replies you might like to take a look at this information on research and clinical trials for oesophagus cancer produced by Cancer Research UK.

x

Just following up again in hopes that anyone may have any advice!

Hi, I am new to this forum, and are wanting pretty much the same info as you.  My husband, 43, was diagnosed with cancer of the oesophagus a few weeks ago which is stage four and has metasized to his liver and lymph nodes.  He has been offered chemo to extend life expectancy from around four months to around 10-12 months, but we are desperate to find out if there is more that we can do.  We live in New Zealand which is very behind in cancer treatment (in particularly clinical trials) and have been told by a Dr friend (not oncologist)  that as we are british citizens we would be better to return to the UK and try and get on a trial to give him a better chance.  Not an easy task as we have two young girls (8 and 12) and no one to stay with in england so uprooting everyone and moving across the other side of the world with them (and my husband too sick to work) is a daunting task to say the least.  However we would do it if there was a good chance of something working.  I have read on line that there are three immunotherapy drugs being used in trials for oesophagus cancer in america, but don't know much about them or how successful they are being.  Our oncologist here is not helpful and just said there is nothing more that can be done, it's just a 'too difficult' one to treat, and immunotherapy has been found to not work for it.  But I can't give up just like that - I know keytruda is one that they are using and I know two people here who have had stage four melanoma completely disappear after being on it for a couple of years now.  It is not funded in NZ though for anything but melanoma.  Not sure if it is used in the UK for anything else? (funded).  His diagnosis is "Metastatic oesophageal adenocarcinoma to liver", and he has started chemo and his treatment is EOX (epirubicin, oxaliplatin and capecitabine) X 8.  He has had three so far and is more comfortable (can now eat normally and lie down to sleep which he couldn't do before).

If anyone has any knowledge of this I too would love to know too what is out there thanks

Hi if you go onto cancer research uk and on thr forum there is a pt called davek who has and still living with stage 4 oesophageal ca with mets he might be able to help you 

regards Donna 

Hi

Have you had a chance to look at the link I gave you to research and clinical trials for oesophagus cancer produced by Cancer Research UK?

It might be of interest to you as well .

x

I did see one they were doing with immunotherapy, I think with ketruda.  There is a lot of criteria for it though, including not being on chemo for at least 6 months which means he couldn't do is at present, it also said half of the people will be given a placebo and no one, even your dr, knows whether you are receiving the placebo or the immunotherapy drug!  Is this typical of these trials? Seems a bit chancey for someone who is stage 4...

ok thanks I'll check that out

Hi

Having not been on any trials myself I don't know if it's common that a trial could include half of the group being on a placebo. However, I'd guess it's not uncommon as they are using drugs that aren't yet available for treatment and one of the things they'll be wanting to see is how much difference being on the drug makes to not being on the drug. However, I'm sure your husband's oncologist wouldn't put him forward for a trial if he didn't think it was suitable.

I see that you currently live in New Zealand and, as you're British citizens, you're thinking of coming back to the UK for your husband's treatment. I don't know the pros and cons to this but you might find this information on using the NHS when you return to live in the UK useful.

x

Tried joining their forum and they won't let me as I am not resident in the UK at present!  Frustrating!

Hi

Just to let you know that I had goj cancer and ended up having a total gastrectomy. Unfortunately I recurred within 6 months and after having a few chemo regimes I was offered the chance of the immunotherapy drug nivolumab in an early access to medicine scheme. I have now been on this for a year and my last two scans have shown that the cancer (inasmuch as can be seen on a scan) has disappeared. 

I'm pretty sure there are currently phase 2 or 3 trials using this drug recruiting. I saw it on the cancer research website. I also know for a fact that while this treatment isn't yet offered as standard on the NHS, it is available privately, as my oncologist spoke about this in one of my consultations.