Living with incurable stage 4 cancer? This thread is for you. Thread #3, in memory of Tilllly and Mowly

[SewingBees]

New thread, can't link to the old one because it's full. I'll try to tag everyone!

@TwigTheWonderKid
@Enigma52
@WrenNatsworthy
@LuciaPillson
@Florsilvestredelcampo
@RedRosesPinkLilies
@GoldenDog1
@HerbalRefreshmentt

Hope you find me here - who have I missed?

@Englishrosegarden
@AGreatUsername
@balkanscot

Kettle's on....

Thanks for the new thread @SewingBees

Shall we do a quick intro again?

Thanks for new thread @SewingBees

Quick intro-

I was diagnosed with stage 3a low grade ovarian cancer in May 22 age 36. Had surgery and chemo, then onto Anastrozle. No evidence of disease.

CA125 climbed throughout chemo and a PET scan in August 23 showed spread to lymph nodes in pelvis, chest and clavicle so now deemed incurable, I guess, they've never said it but they're not aiming to remove what they've seen due to location (behind lungs and by main artery). I've held stable currently and had some drops in CA125 but my 3 monthly bloods came back last week as 2 points higher so I'm feeling quite down.

Next CT due September so we will see. I try and stick to a bit of the Starve Cancer protocol but only the bits I can get in Holland and Barrett!

I rarely post here but am going to try and be better. I turn 39 this weekend, have 5 children between 21 and 7 and work full time, spending all of my spare money on holidays to try and "make the most of it".

@Fantasea

@AGreatUsername What plans do you have for your birthday weekend? Something good I hope? My best friend is coming to visit with her family. They're camping in the garden which is pretty brave given the weather forecast.

@lucysmam
@Shalommjackie

My story: breast cancer diagnosed 2021, lumpectomy radiotherapy and chemo followed. Mets to the spine discovered in Nov 2023 after my back collapsed completely and I couldn't sit or walk. Major surgery a few weeks later and I have a bionic back and can move again though I'll never again be the tap dancer I once was.

I should find out next week whether the current drug regime - Ribociclib, letrozole, Denosumab - is keeping the cancer at bay.

I'm 51 and have a 7 year old daughter and I live in Northumberland. Like others I'm trying to make the most of what time I have left - going on holiday to Australia in August with my daughter, funded by my mum who also has stage 4 breast cancer.

I'm a 54 year old mother of 15 and 19 year old boys (oldest at uni) living just outside Wimbledon with my lovely husband who I've been with for 33 years. And our cat. I work for a charity.

I had breast cancer in 2022 which was successfully treated but last May (2023)I had "appendicitis" which turned out to be a very rare and very aggressive stage 4 appendiceal cancer which has spread to my colon, bowel, ovaries and peritoneum. Given 6-9 months to live with no treatment maybe 18-24 months with palliative chemotherapy.

Have had 8 rounds of CAPOX was off treatment from January to June but my scan showed massive progression so I am now on FOLFIRI.

Happy Birthday @AGreatUsername 🎈🥳

Hello, Im present and accounted for!

Stage IV bc diagnosed de novo in September 2019. Ive been through quite a few lines of therapy in the last year due to a nasty nest of cancer in my hip, which makes walking and getting out a real chore. Currently on Abraxane although if this doesnt work I go to Enhertu in August. Frankly I think its holding it steady and maybe very slight, slow improvement. What is really scary is the tumor on my breastbone which seemed to grow out of nowhere over about three days just befoer I started this line. Not a fan!

Thanks @SewingBees for the new thread.
I'm 57. Had lumpectomy and radiotherapy in 2017 but last year got a recurrence in the scar tissue. Lymph nodes have always been clear - apparently my cancer cells circulate in my blood stream instead. I'm now stage 4 with mets to lung and spine.
I'm on Palbociclib, letrozole and denosumab and also doing the full "starve cancer" protocol. Started treatment and protocol last October and so far I am stable with a bit of shrinkage last scan so I'm happy that something seems to be working so far.

Thanks for the new thread @SewingBees .
I was diagnosed with stage 4 fallopian tube cancer in 2020 . I had surgery after my original diagnosis and I'm currently on my 3rd course of chemo. I'm 53,with 11 yr old son who finishes primary school in a week and has lots of end of year stuff coming up so everything is a bit hetic!

@Englishrosegarden What is the starve cancer protocol?

Thanks for the new thread @SewingBees 😀

My story, is I'm 53, mum of two ( DD 19 and DS 16). Eldest is at university, youngest, starts college in September.

Primary BC diagnosis in 2009. Mastectomy/Chemo/ tamoxifen.

All fine and dandy until November 2023. Aggressive Leiosarcoma found in womb wall, which was successfully removed via a full hysterectomy. Metastatic BC diagnosed in left lung.

Felt like utter shit for months after diagnosis. Currently on first line treatment of ribociclib and letrozole. All stable for now. Next scan is September.

Started back at work this week ( phased return ) and am knackered!! 😴

@AGreatUsername hope you have a great birthday weekend 🎉🎂🥳 and quality family time.

Just wish cancer would fuck right off and have spent many weeks angry and bitter. Now trying to accept my new life as it is.

Hope you all get some sunny weather this weekend, as it's blooming chilly and drizzly here in Cheshire!

@Enigma52 How are you finding the Ribociclib now? I remember it wasn't agreeing with you at first.

@SewingBees I had to drop from 600 to 400, as I felt so ill on the higher dose. So far, so good! 🤞

I last had a chest drain, mid April and although a bit breathless, nothing like I was before the drain, so hope ribo is doing something.

How are you managing with it?

@SewingBees I don't want to say too much as I know a lot of people are very reluctant to discuss or try alternative or complimentary treatment to go alongside the standard of care the NHS gives but if you are interested there is a lot of information available online. Here's where I started from Jane Mclelland, (no need to do the course, the information is freely available online) which led me into finding this great book Naturopathic Oncology. There's a lot more but I don't want to take over the thread or upset anyone.

Hello, can I join you all.

I was diagnosed with stage 2a breast cancer in late 2016 age 43. Had a mastectomy (no radio or chemo) followed by tamoxifen with a plan to take it for 10 years.

A month ago (now age 51), the breast cancer was found to have spread to the bones (whole spine, ribs, pelvis, skull, most everywhere), liver, lungs and the back of one of my eyes (causing a bit of retinal detachment), plus in both breasts. So it’s now stage 4 and my oncologist has described it as ‘incurable, but hopefully controllable’.

I’m starting ribociclib and denosumab later this month, having already begun letrozole and goserelin. @SewingBees and @Enigma52 , how was ribociclib for you at the beginning, and any tips on coping with side effects? Was it the nausea or anything specific that your feeling @Enigma52 (sorry I’ve not seen the earlier threads). And also, not very critical I know, but was hair loss an issue?

Also, I wonder if anyone has had radiotherapy for a tumour in their eye? I’m on Day 3 of 5 treatment sessions; I don’t feel anything in particular, just curious if anyone has had the same experience and hoping it shrinks the tumour enough.

@Caerthynna Welcome, pull up a chair x

I have been fine on Ribociclib though I know @Enigma52 had more side effects. I get mouth ulcers towards the middle/end of each 3 week cycle but am otherwise ok. A bit tired too, but it's hard to know whether that's the Ribociclib, one of the other drugs, or just life. I work full time, mostly from home, and have a pretty full on time of it with a young child, two dogs and a large garden.

The big stress for me at the moment is I don't know if it's working, I'll hopefully find out on Monday when I see my oncologist.

With mets in so many bones is it having a big impact on your day to day life? Do you need a lot of pain relief?

Oh and no hair loss for me. I have a very full head of hair, now very curly after chemo. My eyebrows are very thin but I think the hairs might just be renewing themselves all at the same time - I'm now 18 months since the first lot of chemo when I lost all my hair.

Thanks so much for the replies @SewingBees !

That’s good to hear about the hair. My eyebrows are naturally thin and I’ve been getting good results with NYK1 BrowForce Eyebrow Growth Serum. Worried all the money I spent on the serum might go down the drain 😅

What works best for the mouth ulcers, is it Corsodyl or something else?

So far ibuprofen at the maximum dose has been working for me, and I’m not too much limited in terms of mobility and activity; it’s more of fatigue/shortness of breath from the lung mets. The lower back pain is the worst, but I’m getting radiotherapy for that right now. When I’m cooking or out gardening (in small doses) I don’t feel it as much. However I’ve been strongly advised by the oncologist not to lug around 40L bags of compost anymore.

Australia sounds amazing! Whereabouts will you be going? I lived in Sydney for 3 years, and while there was able to visit Melbourne, Canberra, Uluru, Cairns, Tasmania, and other places.

@Englishrosegarden thanks for the link, very interesting!

@Caerthynna I also lived in Sydney and travelled all over Australia, but haven't been back for 18 years. We'll have a week in Sydney, 5 nights in Cairns and 2 nights in Darwin, which I've never been to.

I'm buying that eyebrow serum! Where's the best place to get it from?

It might be worth asking to use Naproxen instead of ibuprofen - it is stronger and more effective but can upset your stomach. Recommended to take it with lansaprazole. I take naproxen and paracetamol together for joint and sciatic pain in my lumbar.

The oncology unit gives me a mouthwash which helps a lot. I think it's the same as corsodyl. They have loads of different types to try though if one doesn't work so well.

Having started this thread I seem to be taking it over a bit so I'm going to pipe down for a bit!