After 6 cycles of CAPOX which saw a good reduction in my tumours and 4 months of Nivolumab immunotherapy, unfortunately my cancer is progressing again.
It's difficult, as I'd pinned all my hope on immunotherapy after reading so many success stories of people having great results.
I've been offered a second line treatment of Paclitaxel and Ramucirumab. The latter is only available privately.
Has anyone been on this treatment? How were the side affects compared to CAPOX or similar regimes? Did you get good results?
Thanks.
Hi Jamie
I have just spent a bit of time trawling the trials that are currently available, but I the only one I can find that is still current is the Destiny Gastric Trial that Dal is on, but to have that you have to have been on Trastuzamab. But what I have found is that for years they have been using Paclitaxel and Ramucirumab as the combination drug that they are trying to beat results wise, so I am surprised that you are not being offered it as it is in the UK, but you may be right that it is only for private clients.
Maybe when you get to the Marsden you can ask them about upcoming or current trials that may consider you.
Lowe'
Thanks Lowe'
I also frequently look for new trials but also have not found any suitable that are currently recruiting. I'll continue to speak to my cosultant at the Marsden about this too.
Ramucirumab is nor approved by NICE for NHS use, so you cannot get it combined with tbe Paclitaxel. Despite some studies showing improved outcomes, it hasn't been successful during whatever cost/benefit analysis NICE applies
I believe it is regularly used in some other countries as a 2nd stage treatment, for those not responding well, makes no sense that with thousands and thousands of other humans benefiting from it, that it isn't available via our NHS
Hi JayP. Looks like we are on similar paths again. Just had second scan and despite great results on 1st scan it is now spreading in the liver again. I am being put on same treatment as you. Prognosis now pretty grim and hopes of just going on maintenance immunotherapy dashed.
Treatment is in Guildford but wondering if I should also get a second opinion from Royal Marsden.
Worse news yet sadly!
Sorry to hear this NickC. This was the news that hit me hardest too.
I'm currently at the Marsden receiving my first treatment!
If you are able to then I would say that getting a second opinion will not do any harm, and at least you will know you've explored various options. You don't want any 'what ifs'.
Yes I really felt for you when you got your news and it did prepare me for similar news on my side. But I was still hopeful. Yes you’re probably right re second opinion but am probably clutching at straws
Like you I fortunately also have health insurance but it is ridiculous the Ramucirumab is not available on NHS.
Makes me wonder if we need some sort of action group to fight our corner on this and other treatments. Iv been looking into the latest NHS trials for targeted immunotherapy using Covid vaccine technology. Is costing millions and likely to be game changing - but only available for bowel cancer patients. Might be rolled out later for other folks but how is this decided? Makes me think we need a voice!
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