Linitis Plastica Diagnosis

I’m sorry to hear about your mum, I hope that someone can offer you some help and advice on this forum, the Mackmillan nurses may be able to help you  x

My mum has the same diagnosis as yours - stage 4 LP with spread to peritoneum. She had two rounds of chemo until she experienced complications and chemo was put on hold. However, CT scans did show the chemo was working. We have an upcoming appointment to discuss treatment options. 

Hi. I have a similar diagnosis as your mum. Please share with her my message and I’m happy to chat more if it would help  

My journey started in April 24 and while private, my laparoscopy results went through the NHS and took over a month. I took the advice of a friend and got a second opinion. In all truth I thought maybe a different treatment plan might be recommended however it was the same - palliative chemo. I did however feel more comfortable and positive with the consultant/oncologist that gave the second opinion ( my first gave me a look every time I saw him that made me feel that he was certain my future was bleak) I have however stayed private (with the provider of the second opinion) as it’s provided by work. 

In regards to palliative chemo, you will read a lot on the online community regarding the word palliative. It’s a scary word however over time many take a different perspective on it. It scared me at first however now I try not to think too much about it. I finished 8 rounds of chemo a month ago, I’m now on the other side. I’ve gained weight and started eating again. Admittedly it’s not all bliss as I have neuropathy and am overcoming a few side effects however I am here and the cancer has shrunk and remains stable. x

Ps  I’m also on immunotherapy (during and post chemo)  which if you have not discussed, is something to be considered if your mum meets the criteria.  

Hello APP 

Thank you for the reply. So sorry to hear your mum is going through this, although it is good to hear that the CT scans showed the chemo to be working.

We have our initial oncologist appointment today to find out the treatment planned. Do you know the chemo type that has been given to your mum?

Also how is her diet/nutrition going? I am find this part quite difficult.

Good luck with your upcoming appointment.

Hello Sammay0099 

Thanks also for your reply it is much appreciated. I also shared your message with my mother.

Sorry to hear you are going through all of this but also glad to hear you are coming through the other side, I wish you all the best with this.

Would you mind if I ask some further questions:

Were you on immunotherapy from the beginning or was this something that was integrated later on?

How is your diet/nutrition, is there anything that you found particularly helpful to integrate? 

Would you mind letting me know where you went privately? We are looking into a second opinion options.

Also the type of chemo you have been given?

We have our initial oncologist appointment today, and hoping we get a positive plan of action.

Thanks again for the words of reassurance on the palliative chemo.

All the best x

Hi

My mum was on CAPOX for 2 cycles until she experienced complications. She has been recovering from a surgery over the last month following a complication and she now has a stoma bag. She has a CT scan today to see how things are. And an appointment with the oncologist next week to discuss treatment moving forward. A few of the biomarkers came back negative so immunotherapy isn’t an option right now. We are waiting for results for one more marker. 

Her appetite while having chemo was okay during the first cycle. During the second cycle her appetite declined and she has lost a lot of weight since the surgery. The doctors have recommended fortisip as a way to keep her calorie intake up. Can I ask, how old is your mum? 

Hi. Yes, I’d be happy to answer. How was the appointment with the oncologist today? 

When I was first diagnosed, it was through a team of consultants connected to Spire Healthcare. All were very knowledgable however there was a lot that was disconnected. I’d have a scan at one location, a visit with my surgeon in another and the oncologist somewhere else. At the time I found it all very acceptable, it was only when I had my laparoscopy (which was at Luton and Dunstable Hospital as my surgeon also worked within the NHS) that I started to feel unsettled. The biopsy results took a month and it started to bring into question my future care. 

At the time I had also read a bit around HIPEC which is a procedure focused on the peritoneum. My doctor seemed to disregard it and this was around the same time that my  friend made the recommendation of getting a second opinion. I sought out the name of a cancer specialist/surgeon who turned out to be associated to the Royal Marsden in London. We live 90 min outside of London however after meeting with the surgeon and oncologist, I knew it was the right decision to change my care regardless of the trek. The RM ironically has the same position on treatment and HIPEC however I felt more confident that their services (oncologist, doctors, consultants, nutritionists, radiology) would all be connected and therefore more efficient which it has been. It’s been quite a critical part of my journey as I’ve had several side effects where another consultant/doctor has been brought in to support. 

In regards to immunotherapy, as part of the laproscopy, samples were taken to assess if I met the criteria. One criteria is referred to as HER2 which requires that your result comes back positive.  Mine was negative. The other is referred to as a CPS score. For me, this took ages as it also got caught up in the NHS as it was included with all my biopsy results and was even more delayed. Ultimately it came back as a score that met the criteria so I was able to proceed with immunotherapy. I was however told that I could start chemotherapy while we were still waiting for the results. It just so happened that the results came back 2 days before my chemo, so it was included. 

The chemo I received is referred to as Capox (also known as Xelox)  Every 3 weeks I would receive a 2 hour infusion of Oxaliplatin. I would also have a 30 min infusion of the immunotherapy called Nivolumab. The total was 8 rounds with one or two rounds delayed due to side effects (colitis, a rash) or something identified in a blood test.  

As part of the chemo, I also took 4 pills daily - 2 in the morning, 2 in the eve called Capecitabine.  

In regards to nutrition, I had a feeding tube inserted into my bowel when I had my laptoscopy. Because all my scans looked positive, the surgeon inserted it thinking it would support me post surgery. It was only weeks later after the biopsy results that it was discovered surgery was not an option. I’ve always been quite slim at 7 and a half stone so the alternative perspective was that it would help me through chemo when I would not have an appetite. It’s a love/hate relationship as it has its issues however it’s been my saving grace given my starting weight. Saying that however, I have a cupboard full of Fortisips and Ensure Plus drinks as these were also critical when I couldn’t eat. Both have been prescribed however don’t require prescriptions to buy online. They can be quite costly so even if with the NHS, it’s best to see if there is a low cost way to obtain.

I hope today helped to give your mum some assurance. I’m happy to help if any further questions arise.