Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

I just googled Letrozole use in ovarian cancer, and quite a lot of results came up if you want to have a read around.

I got the pump treatment on my leg (machine pumps air into this giant sleeve fitted on me up to my chest, at different pressures in different chambers) for a half hour and then had my leg fitted for the heaviest compression sock I think Ive ever seen. Its like wearing a knitted sweater :/ Just in time for summer! They also ordered my compression wraps via my GP which will take some time to show up, so I can move off the giant stocking (for softening things up) and on to the actual reduction business (compression) in three weeks or so. And I will get the pump action weekly while Im getting my chemo which I was surprised at the actual efficiency of the NHS for once!

Only thing still bothering me is this weird lump on my chest under the rash that started with the first infusion. I really really hope it isnt more cancer, but I dont know what else it could be. My next scans in 2 weeks she added on a thoracic set as well. It came on so suddenly and right after a set of scans Id had, that I just cant believe it would be cancer, but we all know how that goes.

@SewingBees I think it’s definitely used in low grade ovarian cancer - but not so much in high grade. Did you notice if it was also used in high grade?

@TwigTheWonderKid - that’s actually reassuring that you feel that way too- that there isn’t such a clear plan with some cancers. I do think the drug choice makes sense - but would love to read that’s it’s an incredible wonder drug that makes an amazing difference to people in my situation. Obviously it’s not, or it wouldn’t be third on the list and in the last chance saloon!

But it does seem to be well tolerated and I think it’s helping 🤞

There's a bit online about it being used in higher stage/grade cases but inevitably, it's less effective than it is in ovarian cancers which are not as aggressive @RedRosesPinkLilies but as you and I know, we just have to take what we can get, and probably looking at percentages is not that useful as who knows what kind of response we'll have.

It is a rather shit though. My cancer is super rare (2 cases per million for all appendiceal cancers plus it's a rarer and very aggressive form of it) so I kind of understand and have made peace with the fact there's less experience and less willingness to bother with as much research into treatments but yours is not uncommon and surely there should be more effective treatment options for you.

@TwigTheWonderKid thank you. That’s very helpful
I am going to email the oncologist- just to question their thinking. I do have faith in them - but no harm in staying on top of them

@RedRosesPinkLilies I'm not sure what I've said is helpful at all but just want you to know I am here and get it.

Definitely a good idea to interrogate your oncologist though.

@TwigTheWonderKid - I do wish mumsnet offered more subtle options than thanks. A ❤️would be good. Sometimes 🤣would be good.
Its lovely to talk to people who ‘get it’, regardless x

@RedRosesPinkLilies I am just jumping on quickly to mention Anastrozole. I am on it as stage4 low grade ovarian, where it is extremely common standard maintenance treatment for hormone positive cancer. It is interchangeable with Letrozole but usually has less side effects, so if you do find you are suffering on Letrozole maybe ask to change to this. I did find the first 6 months the worst, really stiff achey joints but it seems to have settled now 18 months in!

I find myself unable to post much in here as it's all a bit real, but I do read and think of you all each day. I've my 3 monthly bloods tomorrow, first ones without a CT since recurrence last August, really hoping the CA125 has dropped and indicates stability. So bloodxiety this time instead of Scanxiety for me!

@AGreatUsername I’m similar- I don’t post much as mostly I’m well. So feel guilty for being Stage 4 and feeling well. But I was deteriorating recently- before letrozole- so a real reminder that I am on a knife edge. And a glimpse of my future

@RedRosesPinkLilies @AGreatUsername I'm in a similar position, stage 4 but stable (for now). Because I'm still recovering from major back surgery I seem to get better, and look less unwell, every day, and I get a weird version of imposter syndrome posting on this thread.

@SewingBees yes I completely understand. I am 100% fit and well. For now. It was confirmed in lymph nodes in my clavicle and chest, so distant spread for stable right now. I always feel like by acknowledging it in any way I am waving a red rag at fate. Total psychological torture 24/7 but physically right now I don't feel i qualify to be offering or seeking support. I avoid the genera cancer chat for the same reasons these days, I was active there while in frontline in 2022 but everyone else seemed to pass through and I was pushed straight back onto the cancer path within months and I just can't bring myself to post anymore.

@AGreatUsername yep, I avoid the other cancer thread too, my current version of chemo is very tolerable so quite different to what most people on that thread are going through.

24/7 psychological torture is right though, every little niggle and I worry that it's something sinister and I'm plagued by worry about dying while my daughter's still a child. Which is probably what will happen.

Yes! My youngest is 7, I've already had 2 of the "average" of ten years. And I'm not average. It's just terrifying. I had a hysterectomy at 36 and am just not able to tell what is worrying and what is just menopause so I'm in a constant state of body hyper vigilance and fear.

My daughter's 7 too. She frequently tells me and my husband how much she loves us and doesn't want to have to move out even when she's grown up. Or talks about what she wants to be when she grows up and inside I'm desperately wishing that I get to see that but realistically know that I won't. It's utterly heartbreaking.

I'm taking her to Australia in the summer. We both have dual citizenship but I've not been there for 18 years and I want to show her Sydney and where I worked and lived. I hate the #makingmemories label, but that's what it is - a chance for us to have a fabulous two weeks together that we'll never forget.

I actually said to my Oncologist on Tuesday that I don't know what is normal anymore.
Is it the cancer, chemo, menopause or just normal ageing of the body.
He said to tell him everything no matter how trivial it seems.
I do but then get brushed off most of the time anyway 🙄

CT scan for me today.
I'm a bit anxious as my cannula tissued last time which was rather painful and left my arm swollen, bruised and tender for weeks.
Fingers crossed for a drama free scan today 🤞

Morning all, just finishing off packing for holiday.
Can't believe I've made it!

I'm off to Devon.
@SewingBees please don't feel weird about posting on the thread, stage 4 is stage 4 is stage 4.

Or anyone else. We ain't got no rules.

Just echoing what @WrenNatsworthy just said. Though I also know it's not as simple as that. Some days I really want to chat but nowhere feels "right". I think we just have to remember it's an ever changing situation for all of us, some of us are on a slightly different time line but essentially we are all in similar boats and there are always enough of us to be able to hold each other's hands.

Love Devon @WrenNatsworthy . Which bit are you going to?

Good luck today @GoldenDog1 I hope your cannula behaves!

Have a lovely holiday in Devon @WrenNatsworthy , I live in south wales and often drive down to Charmouth in the hunt for ammonites and love driving through Devon.

@WrenNatsworthy have a lovely time in Devon.

@SewingBees just want to echo what @WrenNatsworthy @TwigTheWonderKid said.
Stage 4 is stage 4. We are all on this shitty journey and reading everyone's posts including yours helps me through the more difficult times.

@AGreatUsername thank you.
Hoping it will be an easy one today. I guess I'll find out in an hour lol.

I agree, about stage 4 being stage 4. Last year I posted on the various cancer threads. But I can’t do it anymore . Stage 4 is only going one way, and I find it hard to be around people who have a hope of cure.

@RedRosesPinkLilies I absolutely understand that.
I also find it hard to read about people who are on treatment with the hope of recovery at the end.
I feel really guilty for feeling this way but in my heart I know I'm happy for them and want as many cancer sufferer's as possible to be cured.
I think I feel this way because I can't relate to them anymore so instead I seek out those who understand exactly what a stage 4 diagnosis means.

@GoldenDog1 absolutely xx

It's so hard, isn't it? 2 years ago I had a "simple", curable breast cancer which I coped with well enough, but still it still felt scary. But it's a world away from being given a possible 6-9 months to live as I was last summer with my stupidly rare appendiceal cancer.

Of course we don't want other people to suffer and die but it's like living in a different world. I've found myself taking "comfort" from stories of celebrities and very wealthy people who have died relatively young from rare and incurable cancers because at least it makes me feel like if I had all the money and influence, I'd still be as vulnerable and unprotected as I am now. It feels like a horrible thing to think but this is such an isolating way to live and I feel so "other" compared to normal people obviously but even most cancer patients.

Sorry, that was probably a miserable and horrible rant.