Living with incurable stage 4 cancer? This thread is for you. Thread #4, in memory of the friends we've lost

[Florsilvestredelcampo]

I will try to tag everyone
@Twigthewonderkid
I saw your update on f/b and send love x

Thank you. Glad you’ve done this - I was trying to. Don’t know how to link to old thread

I also saw your post @twigthewonderkid.
I’m really sorry.

Like @Florsilvestredelcampo I have stage 4 fallopian tube cancer. Diagnosed Easter 2023, chemo and surgery. It never went away - so also chemo resistant. Now on tamoxifen- not sure it’s working and options are rapidly diminishing. Maybe weekly chemo will be offered.

I won’t be seen again officially till after my scan in January. Not in regular contact with oncology- I think they’ve given up on me

Will explain more if that doesn’t make sense

@Enigma52
@RedRosesPinkLilies I'm trying to invite people to this thread but doing a really bad job!! I'm internet challenged!

@Florsilvestredelcampo I'm here!

You've done a grand job of creating a new thread! 👏

@Florsilvestredelcampo thank you for the new thread.

Should we do a quick introduction again?

@Florsilvestredelcampo Why do you think I’m thanking you 🤣
I couldn’t do it either

I think we’ll all find our way here x

Hi. I had rectal cancer 2017 then further reoccurrence 2022 resulting in a stoma. 2023 seen chemo and immunotherapy and radiotherapy. Nothing worked and no treatment available. Just hanging around these days x

Thanks for starting a new thread @Florsilvestredelcampo !

Here are the links to the previous ones:

https://www.mumsnet.com/talk/life_limiting_illness/5117921-living-with-incurable-stage-4-cancer-this-thread-is-for-you-thread-3-in-memory-of-tilllly-and-mowly

https://www.mumsnet.com/talk/life_limiting_illness/5018434-stage-4-cancer-incurable-thread-2-is-here-in-memory-of-our-inspiring-lovely-mowly77

https://www.mumsnet.com/talk/life_limiting_illness/stage-iv-cancer-incurable-roll-up-roll-up-this-thread-is-for-you

My intro: I’m 51 with stage 4 ER+ PR+ HER2–breast cancer, originally diagnosed at stage 2 in 2016 and managed with a single mastectomy and tamoxifen. The disease is in both breasts (including the reconstructed one), my left eye, lungs, liver and bones (skull, spine, ribs, pelvis and pretty much everywhere). I started on ribociclib + letrozole + leuprorelin in July, plus denosumab for bone support, and have undergone radiotherapy to my eye, lower back and skull/neck. My first two sets of scans so far show some shrinking in the lungs and stable disease elsewhere. Fingers crossed things will stay that way.

Hi all. Stage 4 bog standard breast cancer, mets to the spine. Currently stable on Ribociclib, the rods and pins supporting my non existent lumbar vertebrae have broken but I've decided not to take the risk of further surgery as my pain is mostly managed and my new powered wheelchair is helping enormously.

I live in Northumberland and have an 8 year old daughter and two goofy dogs.

Oncology surgeon with stage 4 endometrial sarcoma here. Didn't want to start a new thread because I didn't know the people who passed but I started chemo this week. Wow that's horrendous

I have stage 4 stomach cancer with mets to my pancreas, liver & some blood vessels leading to my colon.
I had a jejunostomy bypass in November last year as my cancer had caused a complete blockage between my stomach and duodenum.
I actually went in to have a gastrectomy, but it was when they opened me up they found it had already spread so they did the bypass instead.
My surgeon said he removed the tumour on my liver during the operation.

I've been on weekly Paclitaxel since January and get to have 1 week off after every 3 rounds of treatment.
My CT scans have been stable so far and I'm hoping for the same results from my CT scan that I'm having tomorrow.

Hi all,
53, stage 4 BC to lung and omentum. First diagnosed 2009; single mastectomy and reconstruction, took tamoxifen for 5 years.

2023, diagnosed with a leiomysarcoma in the womb wall.

Underwent a total abdominal hysterectomy. BC found in all reproductive organs, along with the lung.

Currently on ribociclib and letrozole and battling the shit of menopause!

@GoldenDog1 🤞🏻for tomorrow x

@Whatevershallidowithmylife thank you xxx

That's what I have but not the bc. X

Good luck @GoldenDog1 x

@batterychicken yes I saw, so sorry. It's horrid isn't it. Are you having chemo? X

Hi all!
I'm ER-/HER2+ BC. This is my second BC 'occurrence' in two years with it in my left breast and likely in my stomach. I am unusual in that I have chosen not to have any treatment this time so my cancer is progressing slowly. I am probably at S4 but am having difficulty in getting any new scans done by my very useless hospital because they're twats.

I live in the South with my DP, 2 adult DC's and my cat Alfie who hopefully will be making an appearance on this thread in a Christmas outfit soon! I love live music and try to go to a live gig every month - currently buying Download Festival tickets for next June in the hope that I'll be able to get there.

In case anyone is interested who’s not on it - we also have a Facebook group. Used to let us have an insight into our real lives, but sadly because that way we also find out what’s happened sometimes.
unfortunately that is our reality.
Hard to keep track of names and alter egos - but if you dm me or @Florsilvestredelcampo @Enigma52 @GoldenDog1
we can add you (I think).
Does reduce anonymity- but now we possibly don’t care!
There is also absolutely no pressure to join Facebook, as most chat happens on here anyway.

@batterychicken what chemo are you having? Just in case someone else has been through it and can offer any advice
xx

It's awful. I'm on Gemcitabine and Docetaxel. I feel awful if I'm honest

What is the Facebook group called?

I feel rubbish I’m up to my 10th chemo and the blood has been pouring out of me when I go to the loo. I’m just exhausted.

@EachandEveryone - that sounds just so awful. Anything being done about it or is it expected?
@GoldenDog1 - good luck with your scan

@EachandEveryone its a private group - so I think you’d need to friend one of us on Facebook- first by sending a private message on mumsnet. Then find each other on facebook (sometimes that’s the tricky bit).
We do want to be careful about who joins the group- but it’s open to those on this thread

Hugs to everyone today. Think we need them 🥰

Feeling an intense sense of doom this am. One foot in front of the other day.

@TwigTheWonderKid thinking if you xxx