Started chemo treatment on Thursday 8 May 2025

Hello Mallorca cyclist 

I am Brian, one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying it will be "bumped up" to the top of the page and I hope seen and answered by other members of the group.

I do wish you well with your remaining cycles and hope you don't have any further issues.

Best wishes - Brian.

Hi Brian, thank you so much for bumping it up, I do notice this forum doesn't get much feedback as much as some of the other groups. I was thinking should I join the bowel cancer forum as they seem to be taking the same meds as me and I might get more feedback about side effects.

Hello Mallorca cyclist 

Yes, that's a good idea. I did check to find out where "pseudomyxoma peritonei" affected and now notice you have joined the bowel cancer group.

There are only 103 members of this group and you don't have a Community Champion looking after you so it's quite a quiet group.

I do hope things get better and you don't get any further side effects.

Feel free to give me a shout if you do need anything - the Bowel cancer group doesn't have a dedicated "Community Champion" and I do tend to look out there too!

Best wishes - Brian.

Hi Mallorca cyclist 

I had a different cancer myself, but am a member of the bowel group where Xelox (also called Capox) has lots of discussions. They are both combinations of Capecitabine and Oxaliplatin.

You may want to have a look at this group, as many members have reported the same side effects of tingling, and reaction to the cold when touching metal etc- you may want to wear some light gloves when touching metal handles etc. A side effect called “first bite syndrome” is also common, and it may reassure you to put a post up in the bowel group to get some reassurance from other members on the same chemotherapy. 

I had to take steroids for 3 days after my (different) chemo and they caused me to have difficulty sleeping-it’s a common side effect-but for me only happened for these 3 days each cycle. I hope your remaining cycles go smoothly.

Sarah xx

Hello mallorca c

My understanding is there is no specific chemo for appendix cancer as it is so rare.

My son has appendiceal adenocarcinoma and will start chemo this Friday with capox used to treat colon cancer. I'm his mum and I'm still trying to grasp these finer details after trying to process the total shock of his diagnosis.

Completely well at Christmas, first scan Jan 31st.

Many attempts at getting decent samples for biopsy. Many more details that I won't attempt as I don't want to get things incorrect 

Now he's palliative only and it's so difficult to deal with. So if anyone has any experience at all of this type of cancer please let me know 

Best wishes

Thanks for reading

Hi Brian

It does still have Court as the champion in the bowel group according to her profile and she still looks out for posts in there, but not as often I don’t think since losing her mum. It is a busy group in there, with many long term knowledgeable members who try to pick up on things. I’m a member there due to losing my bowel, so I look in daily too! Appendix cancer is a rarer cancer so there’s not as much traffic in this group.

Sarah xx

Hi ...I am a Christie Manchester patient.   I had CRS/HIPEC In July 22.  I had recurrence in Dec 23 and started FOLFOX and then switched to FOLFIRI - just completed 26 cycles and disease stable I am told.

There is a private FB Group for Pseudomyxoma Peritonei...mage below...it's a UK charity group with lots of members with experience. Worth joining

Hi TGIOM 

Thanks for posting this link-I’m aware that it’s allowed by MacMillan, despite being a FB group because it’s a UK charity, so hopefully some members here who are not yet in the group will join for extra support.

Sarah xx

Hi...there I a UK charity support group for Pseudomyxoma Peronei. I am a Christie Manchester patient.  Lots of experienced members on the group.  I am having palliative chemotherapy....FOLFIRI....disease stable I have been told.

Hi Sarah

Pseudomyxoma Survivor is such a helpful group....over 1,000 members with lots of positive outcomes, support, guidance, tips and just generally full of nice people wanting to support each other with this rare cancer. I am my Oncologist's only  PMP patient so it's hard for the Medics as well when there is no specific appendix cancer drugs.  I have heard though that the Christie research team are trying to recreate PMP in lab conditions to try and identify cause etc. Thanks

Tracy