Linitis Plastica Diagnosis

Oh thank you so much and same to you!

Wonderful that you’ve secured a great oncologist! How did your dad go with the first round of chemo?

Mine is on round 10, is also ineligible for surgery but we are self funding the immunotherapy (in NZ) and he has had a couple of rounds of that.

2lbs is awesome! Well done dad. Sounds like you’ve got a good eating pattern going! Hopefully the appetite stays healthy! My dad has a feeding tube which has been in place for several months which is great for getting calories but not that exciting seeing as he always loved his food. After a few rounds of chemo was able to eat soft foods in conjunction with the feeding tube which has helped keep weight stable ish.

Cheers for your reply! 

Hi Sam, 

Thank you for getting back to me. Thank you so much for taking the time to give us some ideas for food.  We found out recently that a diagnosis could have been made last November but the trust took 6months to hold a MDT meeting. In this six months she complained to the Pals department at the hospital and they were not successful in pushing things forward. It’s hard to not be angry. I want to be thankful to the NHS but I feel we have been let down massively. Her journey with this started in 2023 when thickening of stomach was reported on a CT scan. 

Im hoping that the oncology department are more competent than the endoscopy department. I’m glad to hear that you had a good experience with this team and I hope we do too. We have the appointment on the 1st July. Have been told it has spread to the lining of the cavity wall. 

I am going to try and get her a wheel chair, so that when she feels up to it we can take her out for some fresh air. Has anyone had experience trying to get a wheel chair from the NHS? Any advice? 

sending lots of positive thoughts to you all, every day is a gift xxx

Hi, To get a NHS wheelchair ask for a physiotherapist referral, not sure where you are but sometimes it can take a while, there are some places that you can hire one from around the country,  my cancer spread to the lining but didn’t go through it, good luck and keep going x

Hi,

how is everybody? 

My mum has been on a reduced dosage of chemotherapy so she is tolerating it much better. Although still struggling to gain some weight. 

Hi. It’s so good to hear that your mum is tolerating the chemo much better. 

I’ve had a bit of a bump in the road. The doctors had thought that colitis was causing my recurring pain. A Pet CT scan showed that the cancer in my peritoneum has progressed so I’m back on chemo.  This time I’m on a regime of Paxitaxel which involves once a week for 3 weeks and then one week off. I’ve had 3 weeks worth and this is my first week off. 

So far I’m ok as it doesn’t make me nearly as tired/fatigued as the Oxyplatin. I’m just struggling with neuropathy which is getting worse (despite dose reduction) and similar to your mum, gaining weight. I just can’t seem to put any on. 

Hi

I’m sorry to hear about the progression. But I’m glad the new regime doesn’t take much of a toll on you. Do you know how long this new treatment plan will be for? I hope you see positive results from it.

Yes my mum is also experiencing neuropathy. Have you seen a specialist about it? My mum has started acupuncture to help. But no real improvement just yet. 

Hi. How is your mum doing? 

I’ve been in hospital for the last 10 days with a bowel obstruction related to the cancer. Fluid around my bowel has caused my bowel to narrow. It’s been quite a long 10 days. I’m now home however my treatment last week was delayed and I’m due to find out tomorrow if/when I can continue. The plan is for a total of 6 months (once a week for 3 weeks with a week off) I’ve had 3 treatments so far so have 5 months to go assuming no further delays. 

As for neuropathy, I also had accupuncture. It’s a tricky one as there appears to be so many different symptoms and no definitive answer to if/when it will get better. 

I read a study regarding a group of people who had weekly sessions for 3 months and experienced less pain so that’s what led me to go. After 3 months I didn’t have any pain (and still don’t) however have severe numbness in my hands and feet. At first I also had challenges with my grip however have bought/used every gadget possible and my grip has improved. 

I’m convinced my neuropathy got better in the 6 months I was off chemo however it’s regressed now that I’m back on. I’m just doing what I can. 

If your mum is like me, I can imagine she’s walking up hoping it’s gone away. There is hope, it just takes time (possibly lots of it!) 

Hi

Firstly I’m so sorry to hear you are going through a tough time recently. But it’s good that you are home now. How did today go if you don’t mind me asking? 

My mum is doing okay. She will be resuming immunotherapy treatment soon. That’s the one which caused her to have lots of nausea so we will take it one step at a time. Hopefully she copes better with it this time round. As for the neuropathy, it’s still the same. She hasn’t experienced any pain but she does have the feeling of numbness in her hands and feet. Which gadgets did you buy to help with your grip? 

And yes, she also wishes the numbness with go away! Hopefully with time..

Hi. Yes, lots of time and annoyingly patience :) The gadgets I used to help with grip are squishy balls and a hand stretchy thing. Both quite cheap on Amazon (I’ll add links)

I did see the oncologist yesterday and was given the go ahead to proceed with chemo, however my immunotherapy (referred to as Rambo for short) has also been put on hold as one of the rare side effects is perforation of the bowel. Given the obstruction and that my bowel still feels quite unstable, I’m more than ok with the hold. 

Please give your mum a hug for me. I’ll share the links here;

Vive Squeeze Balls for Hand... https://www.amazon.co.uk/dp/B0725SN7GB?ref=ppx_pop_mob_ap_share

https://amzn.eu/d/ikdtQay

The second link is for a plastic band that you put around your fingers to strengthen your grip.