Just wanted to introduce myself and say a warm welcome to all the new memeber to our rare little group. Wishing we all weren’t here but glad you’ve found us for some support through your journeys.
A warm welcome to JLMantripp, LauJay, Tyogani who have joined us over the past two months.
I’m Cassie, a Macmillan Community Champion, PMP patient and a trustee of the Pseudomyxoma Survivor charity which works to support patients and carers who have PMP, appendix cancer and other peritoneal malignancies.
Here to talk and answer any questions you have. I may not have all the answers but I can signpost you in the right direction.
Wishing you all the very best. Be good to yourselves.
Thank you for your welcome. Myself & my sister JLMantripp have joined as our mum has been diagnosed with appendix cancer and peritoneal mets. Sadly we've been told it's inoperable and she is seeing the oncologist this week re systemic chemo as well as being referred to St Mary's Hospital in London for pressurised intraperitoneal aerosol chemo. It's all happened very fast over the last 7 weeks and before this she was symptom free. She now has a nephrostomy and rocket drain due to ascites build-up. She's been really struggling with sickness and been hardly able to eat & drink which we initially thought was linked to the ascites but it's still quite bad now the ticket drain is in and working well. She's therefore having a syringe driver and currently in hospital to see if they can get the balance of meds right for her. Is it common to have this problem with sickness and being unable to eat? Does chemo help with this? She has to decide whether she wants to put herself through chemo.
* (rocket drain not ticket drain)
Hi LauraSorry to read about your mum's diagnosis. Has she been referred to either of the teams at Basingstoke or the Christie? They may well advise the same course of treatment but if it were me, I would seek their opinion first.
Angela Pseudomyxoma peritonei survivor and trustee of Pseudomyxoma Survivor
Hi Laura (LauJay)
So sorry to hear what your mum and your family are going through. Glad you’ve been able to reach out here.
Am I right in saying your mum has appendix cancer and not PMP? Although they originate in the same place, they are different cancers, they behave differently and the treatment using chemo can be different too. Appendix cancer is usually treated with systemic chemo similar to those given for cOlin cancer. PMP generally is not treated this way.
PIPAC, the pressurised chemo you mentioned, is being used in cases where these types of cancer are inoperable to try and get it to state where it is operable. I cannot say whether or not this is a possibility for your mum but the fact it is being offered as a treatment is positive.
The problems with eating and sickness are common from my experience. I am glad they are treating her to help elevate these symptoms and hopefully she’ll feel some relief.
I hope this has helped a little. Feel free to ask more and I’ll do my best to help.
Best wishes to you, your mum and family.
FYI Basingstoke and the Christie hospitals are the two centres in the UK who specialise in the treatment of colorectal and peritoneal malignancies.
Angela has made a good point and it may be worth asking for a second opinion to see what they think about treatment options.
Thanks Cassie and Angela,
PMP has not specifically been mentioned by the doctors. I want to ask in her next appointment if that's what it is???I've been trying to read up and it is confusing. Her recent hospital discharge summary stated 'mucinous adenocarcinoma of appendix with mesenteric disease'. Do you know what that means?
When we met with her colorectal advisedoctor he advised surgery is not an option due to two reasons; 1) the amount of ascites as this indicates extra microscopic spread they can't see on scan 2) hydronephrosis meaning it has spread into retroperitoneal area. He did send all of her info to the Christie to check if surgery was an option and then referred her to London for the PIPAC (apparently only St Mary's in London and a hospital in Wakes offer it at present and only three people have had it).
The Christie and Basingstoke are both experts in appendix cancers and PMP so a referral is a good option. Did the Christie say surgery wasn’t an option? Yes, PIPAC is very new here with Cardiff and St Mary’s the only options currently. It has been used in Switzerland for at least four years so we’re running quite behind here, sadly.
Just checking in to see how you're all doing. I hope you're mum is feeling more comfortable.
Thinking of you all.
Mum is doing a bit better thanks. They've changed the meds in her syrine driver and she's starting to be able to be able to eat a bit more without being sick. She's still in hospital. The oncologist saw her as an inpatient and has started steroids and she had her first systemic chemo yesterday too. Feels like there are some positive steps.
These do sound like positive steps. Thinking of you all. Shout out if you want to talk.
Wishing you all the very best.
Thank you Cassie, I will do xx
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