Stage IV cancer? Incurable? Roll up, roll up, this thread is for you!

Hello @Englishrosegarden I’m also sorry you’re here and I’m even sorrier to report the raccoon did such a terrible job on my hair I had to wash it myself.

Is the biopsy possibly to determine whether the lung met is a separate lung cancer, or do they know all the cancers have the same profiles as your original BC & are thus all definitely MBC? I can’t think of another reason why they’d do a biopsy. I have lung mets too but these came to light when I had fluid on lungs so they tested the fluid.

They must give you reasons. I would also refuse without a good one.

I was on palbociclib, denosumab ( still on that) & letrozole for 9 months and it worked for the first 6. The dosage was way too high at first (intense nausea) but I went down to 100 and I managed the side effects with immodium, diet, and generally knowing what to expect in the end from cycles.(gastric issues; some nausea, feeling knackered, never got back to exercising properly etc but I managed a whole 10 day holiday no issues, worked two days a week, could look after DD5 mostly ok) Compared to IV chemo which I had first and Cape which I’m really badly struggling with now it was the best regime of the three. I had plenty of normal days.

It’s only now I’m bedridden I realise how much better I was on that drug combo even though I felt low-level ill all the feckin time and sometimes really ill. But many times able to have great days.

It’s gold standard as Herbal says and many women do well on it for much longer.

You can ask for an NHS second opinion at the Royal Marsden, I did, & it was great as my local hospital trust are shocking. I went back for one off appointments twice I think. Then I moved there completely. Their list is closed though and they will only take on a patient being treated elsewhere with that regime if there is something you can prove can be added to your care at the Marsden not available locally. I had to fight hard (I have a v rare blood disease as a result of cancer so it swung my case) and I had help, but I made it. I had a sixth sense my cancer was not going down without a fight and I am right.

So it didn’t change my treatment at first but I was in much better hands and felt psychologically so much better. My oncologist locally was a grade A bitch & causes me untold stress! I actually like and trust all the Marsden staff. And now I’m so ill again that’s helpful as they’re smart, organised and fast to change treatments but I honestly don’t think there’s much they can do for me really, sadly. There are limits to medical science wherever you are treated. They do have more trials though, but who knows if there will be any suitable.

If you’re happy locally and in the lovely Welsh borders it would be a massive trek for treatment. I’m only 1.5hrs away by train & tube (but too sick to get the train now) & the 60 mile drive is also a bitch even as a passenger. But I’m in a state at the moment and you sound like you’re not! And I wasn’t in a state last year or earlier this year so who knows could be a blip.

Whatever you decide, hope that helps a little bit.

I’ve also written my Mo/points/ discussion for tomorrow so I don’t forget @HerbalRefreshmentt ! I think I’ve gone off being admitted frankly after reading the ‘disgusting hospitals’ thread. Don’t read it UK cancer-havers, it was a mistake.

And now I am going to try to attempt to get more than 4 hours of sleep.

I don’t do any crafting — I might try and find some easy projects. But I draw and paint from my bed. ‘Oh like Frida Kahlo?’ said my neighbour when she came round to drop off a parcel earlier, & enquired as to my well-being.

yes just like her

I just got here @HerbalRefreshmentt was delayed due to lack of sleep, heartburn, and a bit of puking. I am now waiting for blood test and my clinic time is at 2 so that’ll delay that … I peered at everyone like a butter to see if they were you when I got here but they were not … I am sorry about the shitty news and the lack of Xeloda doing anything useful but well done on unlocking South Ken secrets!

*nutter (but also maybe a butter)

ahh @Englishrosegarden new drug changes are the worst, psychologically. You imagine every side-effect in the book but it’s always the ones out of the blue that get ya. I hyper-focused on hand & food syndrome from Cape & stocked up on creams and special socks and gloves …so the intense heartburn, puking & gastric issues were a complete surprise. I have never puked before from cancer treatment even hardcore IV chemo!

I am extremely sensitive to any toxicity from cancer drugs but palbo/letrozole/denosumab was very, very doable for me once they got the dosage right. Don’t hang around - if your symptoms are bad (you can’t manage your daily activities; you feel very ill & not just under the weather) tell them right away & get them to lower dosage quickly. Once you get the hang of it there’s every good chance you’ll be fine, so many women are. I probably could have worked full time but my daughter is very young (just turned 5) so I save my energy for her and work part time now.

Lucia I’m loving terminal cancel, and nicking it.

Marsden was v good today - not busy and I got called in FIRST. Never happened before. I felt like a lottery winner. But that’s because they thought I was actively dying & fair enough so did I. But I feel mentally a lot better today and my aim now in this week break from Cape (which they’re keeping me on for another month to see if it’s actually gonna do anything) is to be in bed less, so there you go I’m dreaming big. (Not literally though, dreaming would require staying in bed).

I need a nice nap Lucia as I can only sleep in 4 hour stretches and that’s after globs of sleeping pills! I need to sleep more right now so I can get home at some point today.

I did 6,000 steps yesterday (first time I’ve been that active in a month) including a nice shuffle around the local park so I really thought I’d sleep but my body has plans it doesn’t bother to tell me about. Your post reminded me of a cancer version of those threads called ‘come and tell me your dull and unexciting news, calmly throughout the day’. I’ll read it again and reread my own &’see if I drift off. I had my leftover Japanese food for breakfast with a little bit of toast and marmite. Then I lounged and waiting for my eleventy-billion pills to kick in. Then somehow it was the afternoon and a bit sunny. In the interests of being out of bed I put my long coat on over my pyjamas (that coat is a godsend) and shuffled to nearby park. I collected conkers and acorns for DD and sat in the last of the sun. Then watched as a woman with a buggy stopped and had a MUCH better method for collected conkers . Lots of stomping no pricking … I think she was going to make a recipe / eat them as small child in buggy looked uninterested. She was so efficient! A whirlwind of collecting nature’s bounty. Then I shuffled home again and ordered a bunch of Taco Bell as I am spangled on medicinal cannabis and oxycodone. They still do a 7-layer burrito here (they don’t in the US anymore!) and it was BETTER than US Taco Bell. What a win. I only have the black bean stuff so relatively healthy. I was yawning through Virgin River so much (it is dull I agree) I thought I’d definitely sleep given all my steps …. But NO.

And I feel dreadful now - so much for all this walking stuff! I’ve bored myself back to sleep so hopefully I’ll feel better when I wake up and able to tackle the train.

I’m ok-adjacent … I’ve realised I don’t feel ok-adjacent until Saturday of my week of Cape. Yes that’s day 6 of a 7 day break so… erm….

I did manage to get the train home AND I managed to drag myself to daughter’s school the next morning as they had an end of term thing. I was half-dead though and obviously looked it as was treated like a celebrity whisked to the front and given a chair to sit on & a glass of water. Luxury at a state primary, utter luxury! Then I had a lot of feeling like I had the flu; a lot of relentless nausea & violent vomiting; & the trapped nerve in my shoulder played up so much I couldn’t sleep Friday & I was crying in pain …. And then by Saturday the storm passed & I spent the whole day with DD & went for a shuffle down the beach in the early evening in my duvet coat yes but a STYLISH aggressively-floral one from Copenhagen and not even pyjamas on underneath. But very unwashed. And of course I bumped into people I knew, but it was nice to feel normal. I even had a half in my favourite beachside bar which was the highlight of my year. After accepting I was too ill to go see Madonna when I was in London.

Today I’m a bit fucked though - chesty as daughter has a cough. Lounging in bed typing this not doing my shoulder and back any good at all. & doing admin. The insurance company don’t want to pay for my claim from my US August ER visit, naturally, so they keep coming back to me to ask me more and more ridiculous things & asking me to resend paperwork I’ve already sent.

yes it is half term next week - I feel a bit aghhhhhh about the whole thing. back on Cape tomorrow. I’m not sure I can deal with these ratios of ok-adjacent & violently ill. DD has not yet been at home all day when I’ve been violently ill.

@TwigTheWonderKid & @HerbalRefreshmentt I’m in awe at your sleeping!!

Staying out of bed (mostly) this week has been great for sleeping, I think I did about 6 hours or a bit more last night which is a lot for me. It’s a glorious day here too and it’s going to rain all next week so I really should get up … but DH has just taken DD out to playground and the silence is AMAZING. The time to leave the house is when they come back …

@WrenNatsworthy there’s nothing more annoying than losing a long MN post!

Apart from diabetes meds side effects & stage IV cancer I suppose.

I wish I had an appointment on the 31st; I’d go dressed as the witch I am! I have an amazing sparkly cape thing which is crying out to be worn. Definitely costume yourself @LuciaPillson gotta get the laughs in when we can.

@TwigTheWonderKid I live in Whitstable! It’s tourist & holiday home central here now (moved 10 years ago & it was frankly nicer without the milling hordes) but there was hardly anyone out on the drizzly eve and the water was still, and the light across the estuary amazing. You can go for miles in either direction but that’s for the young, fit and non-cancer havers. I used to do that! But now I love a quick trip to look at the sea and the light as it’s different constantly. As Kate Bush sings “and all the time it’s a changin’”

PSA: anyone in the UK who wants to see the sea/change of scene should check out a charity called Something To Look Forward To. They donate UK holidays and other smaller prizes to those with cancer & their families and it seems super equitable - second time I applied and I have won a stay in a cottage in the Scottish Borders in November! I might be too ill to actually go but maybe not; and if I can’t go I’m sure they’ll understand and someone else can go.

I’ve contacted quite a few Whitstable holiday let companies and politely yet firmly suggested they should work with this charity. @Silkiebunny from the regular cancer threads put me onto it and I know she had a lovely stay somewhere too.