Hello everyone. I’m new but wasn’t sure if I was going to post anything. I was diagnosed with stage 4 cancer metastasis in Omentum. I’ve being offered palliative chemo only. Still waiting to see the oncologists. I had lost hope but have seen so many of you staying strong and fighting. I’m not really sure what to do while I’m waiting- I get worried that it’s spreading. I just want to start chemo and give myself a chance to beat this. I have also looked at other options available out there eg HIPEC as I’m aware most surgeons will not operate if it’s stead to omentum. Would be good to chat to anyone who’s had experience with this.
I’m numb most of the time and breaks my heart to think that my little boy will not have a mum
Hi Victorious,
I'm so sorry that you're going through this.
Recent changes to NICE guidelines mean that everyone is entitled to MSI testing and PDL1 testing to see if they are eligible for immunotherapy, which can, in ideal candidates for the treatment, have more of effect on peritoneal mets than chemo for some people. Those who are MS-H (about 5-7% of gastric cancers) and those who have a PDL1 score of more than 5 (around 30%) are eligible for immunotherapy.
Perhaps speak to your oncologist about this and remind them of the NICE guidelines on testing and access to immunotherapy, because not all NHS trusts are currently compliant with these guideline changes?
Hope this helps,
SDH x
Knowledge makes us stronger. Research, question, share and demand more from your doctors. Read my profile for my dad's stage IV story.
Thank you so much SDH. That’s really helpful I wasn’t aware of this, so I will definitely mention to the oncologists- you never know until you try xx
Thank you so much Vespa ets Staying positive and hopeful! Sending hugs to you as well xx
Hi, you need to go and get a second opinion from this guy
https://www.iwantgreatcare.org/doctors/asif-chaudry
He removed my omentum along with my stomach so is prepared to operate and remove that area too !
Dont accept first opinion and go and see what others can and will do for you.
Keep fighting !
Hello Red10, that’s really helpful. Thank you so much for this I will definitely get in touch. I hope you’re keeping well.
We keep fighting and staying strong!
Hi Victorious, I find this site very user unfriendly and can't seem to figure out how to message you even though you added me. Can you PM me?
Knowledge makes us stronger. Research, question, share and demand more from your doctors. Read my profile for my dad's stage IV story.
Hi Victorious, I’m so sorry about your diagnosis. My 59yo mother was also diagnosed with gastric adenocarcinoma with mets in omentum and has started treatment two months ago. Since it is HER2+ and PL-D1(?), her treatment consists of targeted therapy, immunotherapy, and chemo. What I understand is, this treatment should give us a certain progression free period. I’m here if you’d like to compare notes or just talk about how much it sucks.
Hi Red10
I hope I could seek your advice. I’m new to this group as my father got diagnosed with stage 4 gastric cancer on Monday. It’s spread but he was told it’s inoperable. He’s in an off shoot unit of the Royal Marsden and needs to see the Oncologist (maybe my parents are shielding me, but, they are also quite naive and won’t push, get second opinions and trust the system entirely). I’ve read up about Asif, he sounds amazing. What stage were you and were you told inoperable? It’s spread to lungs but hoping you can treat that with chemo or radio (I’ve seen so much lingo on here I don’t understand and need to learn about). But any advice you have would be so helpful. It looks like Asif offers private consultations, which are expensive but willing to pull together to get my dad an appointment.
thank you so much
Hello Red10.
I am interested in how you are doing and your life style since your Gastrectomy. My wife aged 74 has a malignancy at the junction of the stomach and Oesophagus which we are told needs surgery as a complete Gastrectomy.
We hope you are now leading a better life.
Kind regards
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