Linitis Plastica Diagnosis

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Hello All

My mother has been diagnosed with Linitis Plastica T4A N2 M1. All CT PET and ultrasound of thyroid, liver and lungs were clear. However when a laparoscopy was carried out a nodule/white spot was found on the Peritoneum and cytology washings came back positive.

She has had symptoms of reflux, very small appetite, and sometimes needing to vomit if she has too much since September but is generally well in herself. However, after the stage 4 diagnosis she is feeling defeated.

They have said because of the spread, it is inoperable, we were initially told that it was curable and they could take the full stomach out.

She has a meeting with oncologist 13th Jan to discuss palliative chemo. It all seems to be going a bit slow, and doctors have gone from optimistic to not much they can do.

I have read through some previous posts on similar situations and wondering on outcomes or recommendations, going private, trials etc? How well did chemo work for a similar situation?

Any info or help is much appreciated, as you can imagine we are all absolutely heartbroken, as it’s come so out of the blue. Thanks

  • Hi. That’s such great news that the recent scan shows a reduction. I had 2 scans during chemo, one half way and the other at the end. The first also showed a reduction with the others showing it as stable. It made a huge difference in terms of my ability to eat without pain once my appetite came back. Hopefully your mum is now also eating more? Chemo is hard as it makes your appetite near to none - I could barely fathom a biscuit. 

    How is your mum doing? I’m glad she’s feeling less nausea? How many rounds of chemo does she have left? 

    I’m feeling much better now that I’m no longer having chemo. It took a few weeks however I’m now able to walk the dogs as I had before, get through a day without naps and generally feel much better in myself. I think eating normally has helped quite a bit. 

    I hope your mum is feeling ok and near to the end of her chemo rounds. It does get better, it’s just day by day! 

  • Hi. I’m glad to hear the cancer remains stable and that you are gradually feeling better! It’s nice to know that she will eventually feel better again. 

    Over the past few weeks she hasn’t had any energy and hardly eating. The nausea has been a lot and difficult to get under control. She’s trying to eat when she can but doesn’t have the appetite. 

    As for chemo, she has 4 sessions left. Are you on any form of treatment now? 

  • Hi. Yes, it’s not easy at all. Oddly, the one thing I could manage to eat was a banana. I’d sit with one in the morning and the eve and try to work my way through it. Sometimes it took hours. If your mum is ok with bananas, it’s one thing to consider. 

    I finished chemo in December and have continued with immunotherapy infusions every 4 weeks. I’ve been advised I could be on for 2 years - I think that’s the maximum time it is funded. It does have its side effects however it’s no where near as hard as chemo with the appetite and fatigue. 

    With 4 sessions left, there is a light at the end of the tunnel. X

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