Linitis Plastica Diagnosis

Hello Sammay0099 

How are you getting on? Hope you are doing well.

We have also been through a similar experience of going to various hospitals for the tests and this along with the holidays has caused delays. 

We met with the oncologist last week and have 1st copax chemo appointment this Wednesday 15th. We are also looking to get a second opinion from Royal Marsden or Christies.

Like you we are also waiting for the results of the laparoscopy samples to determine if immunotherapy will be included in the treatment.

Is Hipec something that would be available to you in the future if the current treatment were able to reduce the spread / tumor?

The nutrition is our biggest issue at the moment, hoping the chemo will help with this one. We also have the fortisip but had to move to the plant based option as the milk is making her sick.

I wondered, if you had looked into any of the Jane Mclelland research at all?

Hi

My mother is also on low dose Folfox. If she manages to improve, they will give her immunotherapy, although she is very weak.

Greetings and encouragement!

Hello

When on CAPOX she had several episodes of diarrhoea causing her to become very debydrated. along with abdominal pain after the second cycle. The oncologist has advised FOLFOX to reduce the risk of loose stools. They will begin with a lower dose to see how she gets on. And on the next cycle they will introduce immunotherapy. 

All the best for your mums treatment. 

Hello

how is your mum getting on with FOLFOX? And which immunotherapy is she able to have? I hope she gets her strength back soon. 

Hi

With Folfox the only symptom she has is tiredness and fatigue.

But tumor markers continue to rise for now. Have you managed to get them to go down? Do you know how much the CEA and Ca 19.9 markers are?

The immunotherapy that can be given to her is Nivolumab.

Good luck and a hug

Hi,

How is your mum doing after her first chemo infusion and week on chemo pills? Also have you spoken any further with the Royal Marsden and/or Christie’s? 

I’m doing well with the exception of a few niggles. After my 8th infusion I found that my hands and feet became numb (referred to as neuropathy) After each infusion I would typically have tingling however it always went away. This hasn’t. Given what I’m now experiencing, this means the nerves have been damaged by the oxiplatin so I’m now doing all I can to support regrowth (acupuncture, vitamins)

In regards to HIPEC, the view from my oncologist is that (in my words) - it’s not worth going through the 12 hr procedure, risk to quality of life and halt of all other treatments in comparison to any benefit. Apparently research shows that it doesn’t have a significant impact on the stomach cancer (ie the linitis plastica) which is the primary. 

I’ve only just started feeling better (minus the neuropathy) after 8 rounds of chemo so can’t imagine putting myself through something quite severe once again. 

I hope your mum has found the plant based option of the drink to be kinder to her stomach. Ironically I bought Jane Mcllelland’s book quite early on. It was evident though that I just needed to eat whatever I could whenever I could as I was slim to start with. I couldn’t risk losing any weight as if anything I needed to gain it. 

My mom had most of her stomach removed, which I thought was not a good idea.  That was in February 2006 and she passed that December.   It’s a tough tough cancer 

Hi

How are you getting on with chemotherapy? My mum started immunotherapy recently and she’s been experiencing a lot of nausea. It’s been on and off for the past week. She has her next treatment scheduled for this week so hopefully this round is a little easier. 

Hi. I’m so sorry for the delayed response. How is your mum and did the doctor prescribe any medication for the nausea?

I had my last chemo infusion on the 15th November - although it’s stated that I ended chemo on the 5th December when I stopped taking the chemo pills. At the time I was diagnosed with mild colitis (I had colitis early on and the doctors thought it had gone) As a result I was put on steroids and my immunotherapy was put on hold. 

The immunotherapy has only since started again so now I have an immunotherapy infusion every 4 weeks. I had a scan late Feb which showed my cancer remains stable. I have neuropathy(complete numbness) in my hands and feet which is a pain however I’m doing everything to try improve and trying to be patient! 

I hope your mum is feeling better. 

Hi. No worries. That’s really encouraging to hear that the latest scan has shown the cancer to remain stable. But sorry to hear about the neuropathy. I hope it does get better. How are you feeling that that you have stopped the chemo?

Yes the doctor provided some different medication and it seems to be more under control now which is good. But she has lost a lot of weight as a result. So hoping she will put some weight on now that the nausea is less. She’s also very tired most days and gets breathless. But scans have shown a reduction which is great news!