Linitis Plastica - Mothers diagnosis

Hiya Chrissywod,

Hope you are doing okay despite everything! So glad to hear your Mum has reacted well to the chemo, is the plan for a break and then another few rounds of chemo?

I've been looking probably far too often at the Cancer Research site for clinical trials: https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/clinical-trials-search?populate=Stomach%20cancer&f%5B0%5D=field_trial_status%3A4386

The PLATFORM trial is about targeted drugs although there is a control group and that trial ends in March 2023. Hopefully more trials keep popping up on there that is more relevant to your Mum and her diagnosis!

Have you mentioned HIPAC to her oncologist as I understand some people with stomach cancer can be applicable for HIPAC although it's not that popular yet in the UK. 

There is a very useful Facebook group which I've joined and it's been interesting to hear of other people's experiences, obviously some are very sad but some are also quite uplifting! A lot of US experiences which is interesting from this side, and there are more mentions of CAR-T trials which I've never even heard of here in the UK but that also sounds like a difficult one to join. But the fact there are these promising trials out there keep me feeling positive at times.

I've looked at the Europe databases for clinical trials too but there are many out there, ongoing and not, so I can't advise on how to navigate those as I haven't figured it out myself! 

For my Mum who I think is in a very similar position to yours, we plan on waiting until she gets her scans back and then will check in for a second opinion (possibly a private one) just to be sure the advice we're being given is right or if there is anything else out there that isn't being explored by her team. 

Hi Enjoybagels,

Good to hear from you again. How is the treatment working for your mother? 

Yes, the plan is 9no cycles and then to have a break. I have heard of the PLATFORM trial and they are completing that at our local hospital, so the plan is to engage on that next. However, it has 4 or 5 arms of treatment and is generated by a computer, so my mother may end up with a good option for further treatment, or maybe selected to have no further treatment by the computer. 

What is HIPAC? not sure I have heard of this? 

I do keep looking for trials as well and I feel there are new ones starting all the time, but it is luck that one suitable is running at the time of need, so we just need to keep everything crossed. 

Thanks for the advice on the FB groups. I will take a look at those for sure. 

Another site I have found is RareCan, which we are registering for, but it depends on the type of cancer your mom has, because this is an organisation to help increase survival rates for rare cancers. 

A last resort I have been looking into is CBD oils, but there are so many mixed reviews and obtaining a good quality oil seems difficult. I have seen some positive stories on these forums for them though, so we will look to try something like this as a last resort. 

keep me updated please if you manage to get any further information on trials etc 

Hi Enjoybagels,

The recommendation for the FB group has been very useful. I added a post and have had some responses already from the UK, which as you say is great to hear of other peoples journeys. 

Hi Chrissywod,

I am glad to hear that the recommendation was useful! The treatment seems to be working okay for Mum so far and she has three rounds left, had a couple clots which has been resolved with blood thinners but it hasn't caused any delayed in treatment thankfully and she's eating more and still able to be active on walks which has been great to see!

Yes, I have read that regarding the PLATFORM trial and it is a little frustrating that there is a chance for no treatment on that trial, surely everyone in this position should have some treatment but I suppose it is worth checking out anyway as an option.

HIPAC as I understand it is a way of treating cancers in the abdomen usually after surgery by applying heated chemotherapy drugs directly inside the abdomen so always worth asking if it's possible for any cancer case in the abdomen. I'm not entirely sure what the criteria is to be applicable for it but I have heard of some patients with advanced stage cancers exploring this option.

Thank you for the mention of the site, RareCan, that seems really useful and helpful and I will take a closer look at it and see if Mum can sign up!

I will absolutely keep you updated on any further information trials! I've also been keeping an eye on the NICE website in case there are any announcements on new treatments approved for stomach cancer but most developments dates seem to be TBA for now.

I've also heard about the use of CBD oils, I'm not sure which is the best to obtain (hopefully others on here could give suggestions) but I always think if any alternative helps and does not interfere with approved treatment, there is surely no harm in giving it a try.