Prognosis

Hi Eibhlin and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I can't help with your question, as I have a different type of cancer, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where hopefully someone from this group will see it and respond.

While you're waiting for replies it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Thank you for your reply...

Hi

Sorry you are on this journey that nobody wants to be on.

I've only just started mine. I don't know yet what if any treatment lies ahead for me. Wishing you the very best. 

Always here for a chat 

I am now almost six months after my surgery and on systemic chemotherapy   Izhave had few post operative issues except with my stoma.

The systemic chemotherapy is quite difficult but I am getting through it.

Iwas referred to an oncologist in my home town after my operation  and don"t feel at all confident that he knows what he is doing.

On my last appointment his team member didn't even know what pmp is so it is difficult to have a conversation with him...he said my scan was clear NED. which he only looked at when I was there....

He so busy going from patient to patient   feel I'm falling through the cracks...

Sorry to read you're not getting the information you need from oncology to put your mind at ease. 

I am currently on Folfiri systemic chemo. Just had 2nd round of 6 and coping really well with it to be honest but still early days. After 6 rounds (3 months) then I will have further scans to assess how it's working and then will continue with another 6 rounds before surgery. 

This is to give me a better chance of stopping any further spread outside of the peritoneal cavity as I also have a nodule on my lung. Only recently informed of this by oncologist that it had been detected in November but no change shown on recent scan. 

I have high grade signet ring cell and appendix is still in situ.

I was originally due to have Xelox but due to existing mild neuropathy in my feet it was changed to Folfiri.

I hope everything goes well for you and you get the answers and support you need.

Hi there, sorry to hear you are dealing with this cancer. Sounds like you are doing everything you can following your surgery.

May I ask where you had your surgery? 

My husband had his at the Christie in Manchester, and as far as I know all his follow up scans will also be done there. It’s so important that the scans are read by appendix cancer specialists, as those are not easy to read. My husband’s scan at his diagnosis showed all clear, but when they looked at it at the Christie they found mucinous tumours in 3 locations within his peritoneum. If there’s a way to get your scans referred to a specialist, I would try to push for that as GP’s and general oncologists don’t seem to have the knowledge on this rare cancer. 

Wishing you all the best x

Hi

I have been recently diagnosed with LAMN which had ruptured and sealed a few times so now in the Peritoneal space. I am going into the Christie when they have decided about surgery and HIPEC, but meanwhile having a biopsy on Thurs for a suspicious area in stomach, which could delay everything. It is so scary......and I wish that more was known about this horrible disease which does not behave like other cancers. I am trying to be positive and am glad of any information or guidance from anyone who is going through this, or has had it.

Hi, sorry to hear that you are going through this. My husband was treated at the Christie with LAMN with PMP and had cytoreductive surgery and HIPEC for it in May. Is there anything you would like to know? Everyone's case is different, but I am happy to help if I can. x

How kind of you.  I will message tomorrow....with queries. Thank you.

Make sure they have a radiology consultant review the CT scan.

preferably one with experience of PMP.

Was your CRS/HIPEC done locally or at one of the 2 UK specialist hospitals for PMP; these are at Christie’s Hospital Manchester and Basingstoke hospital.

I had my CRS/HIPEC by the Basingstoke team on 21-Feb-2022, and have just been told that my latest CT scan is showing a recurrence of the PMP.