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Stage 4 bowel cancer

mariacm

Signet Ring Cell

Hello,
My husband has recently been diagnosed with SRCC of caecum and sigmoid metastased across his peritoneum.
I understand this is a rare type and wondered if anyone on here has experience of this and can offer any words of advice or help
Many thanks
Maria

charleyb

Tagging @Fighting4hubs as her hubby has signet ring cell so maybe able to help you @mariacm :x::x::x:

Fighting4hubs

Hi, thanks for tagging @charleyb my husband was diagnosed with signet ring cell in his sigmoid colon back In March 2017, he was also diagnosed with testicular cancer too!
The signet ring is rare and from my understanding quite agressive! He has completed 12 rounds of chemo which was Folfox with added Cetuximab as he has a Ras gene mutation and is positive .
Do you know how much spread there is in the peritoneum? We are chasing HIPEC and Chris is having a laparoscopy to assess him for possible surgery ??
Has he any other spread? Will the resect the bowel?
Thinking of you at this difficult time, there are just so many questions and it’s scary, but I think positivity is key!
This site is amazing and the support is fantastic! I’m so sorry you find yourself here, but you’ve definitely come to the right place !
Biggest hugs :x: :x: :x: :x:

Fighting4hubs

So sorry I’ve just read your bio!
Similarly my husband was fit as a fiddle and never been ill in hospital!
Where is he being treated ?
Will they look to shrink the bowel cancer to then operate?
What chemo is he commencing on?
I too have little ones, our daughter is 4 and our baby has just turned 4 months old. :x: :x: :x:

mariacm

Thank you so much for replying.

I had a nose at your bio too and there do seem to be a few similarities! We are in the middle of building works too amongst other things!

David has been told his bowel cancer is inoperable as his sigmoid and caecum are now fused to his peritoneum ?. His peritoneum is apparently covered in metastased nodules.

He has been offered palliative chemo and told he might get up to two years as RAS allows cetuximab.

I feel so much better just knowing that your husband has completed that much chemo. The way they spoke to me after the emergency surgery for diverticulitis it didn’t even sound as though he would make it out of hospital!

He had a permanent ileostomy during the surgery and a ureteral stent due to imminent kidney failure due to ureteral compression. Thankfully, despite kidney sepsis, he managed to avoid the nephrostomy as that apparently hurts.

He is having a port put in on 17th and chemo starts on 18th, so same day you are at Imperial?

I really hope that goes well for you. I hadn’t heard of it at all. I’ve said about it to David so he is going to ask the GP but no idea whether he fits their criteria or not.

Other than that just ordered CBD oil and he is about to start taking aspirin daily. Multivitamins and magnesium about to be bought tomorrow! I just need to feel as though I am doing something so loading him up with stuff!

How did your husband get on with rashes from the cetuximab?

I am so pleased to hear from you. This all feels so cruel and I feel really alone with it and as though David has been completely written off.

:x::x:

mariacm

Oh sorry... West Suffolk Hospital in Bury St Edmunds :x::x:

mariacm

And FOLFIRI I believe..

Bear G

Hi @mariacm
Sorry I can't add any specific advice on SRCC but just wanted to make a comment on supplements and CBD oil, please check with his oncologist before starting anything as some may have interactions with his Chemo. If the oncologist says it's ok then go for it.
HIPEC isn't something his GP will know anything about and is again something to ask the oncologist about. In fact, HIPEC at Imperial is very new and many oncologists may not know about it yet, they are willing to take some patients who've been turned down by other units such as Basingstoke so definitely worth looking at.
Hope this helps
Big hugs
Bear
:x::x:

mariacm

Thank you Bear. All advice is appreciated as want to do the best things possible to help David. We did ask the oncologist about CBD oil and he said it wouldn’t do any harm and is an ‘interesting’ compound.

We’ve written a note to ask about aspirin but I hadn’t thought about multivitamins and magnesium so shall put those on the ‘query list’.

Thanks for the info about HIPEC; I’d only thought about GP as it gave a process for GP referral on the bottom on the Imperial page but it makes sense not to annoy David’s oncologist (thoughhe spends a lot of time talking about cost of treatment ?

Thank you again

Maria

:x::x:

Fighting4hubs

Good evening Maria,
Please accept my apologies for not coming back sooner. There has been so much going on these past few weeks!
Chris has had a port fitted since May 17 and it was the best thing he did for chemo. He doesn’t notice it anymore and it’s worked well for the treatment!
He has had awful skin with the Cetuximab and has been on permanent antibiotics to prevent infections. His skin regularly bleeds from the spots and his eyelashes have to be cut every few weeks- his hair has also gone like wire and is very coarse! But we have been told all these side effects are good signs that it’s doing something!!
He managed 12 full rounds of chemo, and has been left with Permanent neuropathy in his hands and feet, but he actually manages it by working!!
He finds that the doing makes him forget it and it’s only in the evening he notices it the most when he’s sat watching tv!
@Bear G is correct , they want the referral from your oncologist and our GP surgery weren’t keen to comment when I called them! They didn’t know enough about it!
I would also check anything supplement wise before taking - we asked about Cannabis oil and they have said try the chemo first and then look into this .... Chris takes Curcumin and I have him on apple cider vinegar and Manuka honey! I also drive him mad with the juicer !!! I will juice anything !
We have stopped all red meats, processed anything and try eat as naturally as possible! He has soya or almond milk and I try get him to avoid wheat... we eat spelt bread and pasta etc.
I have learnt so much on this journey but the
Main thing is being your own advocate!!!
10’months who our local hospital washed their hands of chris pretty much and said there was nothing they could do!
The letter was just awful and basically wrote Chris off and told him to put his affairs in order and wait to die!
We know signet ring cell is a poor prognostic indicator but we have to keep fighting for our girls! No one knows how long anyone has and there is always hope!!
Keep pushing for everything and anything and if you’re not happy I would ask to be referred to another oncologist! The Marsden have been truly amazing & a breath of fresh air!
I hope some of this can help you, Please message anytime - I will get back to you ASAP!
Sending you love, hope, strength and prayers to you all :x: :x: :x: