My wife had CRS with HIPEC at the Christie in Manchester 2022, for appendiceal mucinous adenocarcinoma. Sadly it returned earlier this year as stage IV peritoneal disease, perhaps having evaded HIPEC. The high grade tumours have spread extensively across her abdomen and have put pressure on her insides to the extent she’s had stents to her ureters, sigmoid colon and duodenum. She still can’t eat, and her bowel has pretty much stopped transit. We have joined the COC protocol but she needs to be on TPN with a gastric vent tube if we’re going to have any chance of her absorbing all the pills and supplements. We have our first oncologist meeting tomorrow but if the response I’ve had from the NHS provider when asking about collaboration with this metabolic approach has been anything to go by then we may be disappointed.
Can anyone out there provide names of oncologists who would be willing to work with us on a combined approach? Thanks for your help
Hi Baldrower and a warm welcome to the Online Community but so sorry to hear about your wife and the challenges you are dealing with.
Getting support from others who are dealing with the ‘exact same' cancer or cancer support challenges can help a lot.
This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms)……… I am not a medical professional so at times I am not 100% sure what would be the best group for folks to connect in with but if you care to have a look through THIS LIST you will find all our dedicated cancer support groups listed.
These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same journey.
Have a look through the LIST above and once you find the support group that best fits your wife’s situation....... click on the link and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As for the practical and emotional challenges of supporting your wife and indeed yourself may benefit from joining and posting in our…….
and our
Supporting someone with incurable cancer (If this is appropriate)
……… support groups where you will connect with others navigating the same support challenges.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
