Stage 4 bowel cancer

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Kformaggio

Peritoneal disease concerns

I have two metastatic peritoneal tumours plus for good measure I'm BRAF. Since last January I have been on Cetuximab and Encorafenib which seemed to be working well but I now have a CEA of 130 and the tumours are gradually increasing. I asked to be referred to Prof Jamie Murphy and have just seen a copy of his response which says that I am not a suitable candidate for any of the treatments he specialises in. He writes that I have both peritoneal and retroperitoneal disease with possible disease around the anastomosis and that I have nodal disease both below and above the diaphragm. This has come as a disappointing shock and I'm not due to see my oncologist until 5th January. Does anyone have a similar condition and are having effective treatment? I realise that my condition is not curable but am hoping there is some kind of treatment that will prolong my survival. Thank you.

HH79

Hi @Kformaggio i’m BRAF and peri/lymph mets etc. So you referred to Jamie M assuming for HIPEC? Sounds like you have lymph involvement which is a contraindication for HIPEC as those will left off treatment for a few months and potentially spread about body. Things can change eg another treatment instead of Beacon could improve? Have you had Folfox or Folfiri? You can read my profile - we sound like ‘met’ twins! Helen :x::x:

louise28

hi @Kformaggio am sorry to hear this. Just to add to what Helen says, i think in some cases HIPEC can happen if there are lymph nodes around aorta or bowel etc, but above the diaphfragm is not usually touched by HIPEC unfortunately as outside this area. I would ask to speak to your oncologist sooner perhaps and see whether he or he has any other suggestions. Did you have FOLFOXIRI yet or similar before the current treatment? wishing you luck :x::x::x:

Kformaggio
Quote from @HH79:
Hi @Kformaggio i’m BRAF and peri/lymph mets etc. So you referred to Jamie M assuming for HIPEC? Sounds like you have lymph involvement which is a contraindication for HIPEC as those will left off treatment for a few months and potentially spread about body. Things can change eg another treatment instead of Beacon could improve? Have you had Folfox or Folfiri? You can read my profile - we sound like ‘met’ twins! Helen

Hi there Twin Helen. Yes I do have lymph involvement and after speaking to my Macmillan Nurse yesterday I found out that some of it is by my left shoulder. She had looked at my medical notes and read about the lymph issue which had been known about back in early October when I had my last telephone consult with my oncologist who didn't tell me about it - I'm furious!!! I haven't had Folfox or Folfiri but will mention them when I see my oncologist early in January. My Macmillan nurse has sent the oncology team an email to say that when I have my next consult I want them to have looked into my case and come up with some helpful suggestions - fingers crossed. Kay :x::x::x:

Kformaggio
Quote from @louise28:
hi @Kformaggio am sorry to hear this. Just to add to what Helen says, i think in some cases HIPEC can happen if there are lymph nodes around aorta or bowel etc, but above the diaphfragm is not usually touched by HIPEC unfortunately as outside this area. I would ask to speak to your oncologist sooner perhaps and see whether he or he has any other suggestions. Did you have FOLFOXIRI yet or similar before the current treatment? wishing you luck

Hi there. I've never had Folfoxiri but will be mentioning it when I next meet with my oncologist. The oncology team I'm with really aren't the best and have previously stressed that when the Beacon treatment stopped working I would be toast! I shall be much more assertive when I have my next consult and won't take shrugged shoulders for a response!!!!! Take care and thank you for your response. Kay :x::x::x:

Kformaggio

@HH79 @louise28 Hi there. I saw my oncologist on 5th January and as a result I am being fitted with a PICC line on 20th January and start on Folfiri the following day. I feel relieved that I am being offered some treatment and am hoping it will be helpful. So I'm determined to keep on truckin' !! :x::x:

Robbie-C

Stay strong 💪🏻. Sending my love. ❤️

Lee W

Wishing you all the best @Kformaggio :)