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Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

965 replies

LemonDrizzle10 · 24/12/2023 11:59

Old thread nearly full!

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SummerCycling · 23/02/2024 17:55

@demivolte Oh sorry yours also grew at the speed of light. I also felt mine growing, both the tumour as well as going up higher in the lymph node chains. I had to wait 2 months for chemo to start. I think they should prioritise grade 3 BC cancers really.

It's good they're treating you on the (hopefully false) assumption that it's spread. Grade 3 Her2+++ HR-neg is so terribly aggressive it's better to be safe than sorry.

Well done getting to the end of chemo. I didn't manage that, but stopped early. I hope your sense of taste returns soon and you can enjoy food again.

You mention gastro issues. If you mean diarrhoea, then you might continue to experience that while on pertuzumab. That gave me the most ridiculous diarrhoea ever. After my last Abraxane (nab-paclitaxel) with phesgo, it was completely unbelievable, but even just on Phesgo it was pretty extreme. Also no warning... luckily not painful. I'd never really had diarrhoea before, so it was a surprise for me that I got that side effect and to what extent. I then found out online that pertuzumab is known for it.

@EachandEveryone Oh no, that's so totally annoying! I remember wanting my PICC line removed: it always got in the way, was a pain to have flushed and you can't swim, or even shower without a whole rigmarole of putting on the plastic sleeve thing. I was glad to have it when needed though, better than the chemo into my veins on my hand - but removal asap after that. I hope they remove it soon for you!!!

@Enigma52 I'm sorry I don't know the answers to your questions, but hope someone pops into the thread soon who can advise you.

TopOfTheCliff · 23/02/2024 18:10

Hi @Enigma52 and welcome. There is no such thing as too negative on here. We suffer and we moan and swear. Nobody gets thrown out. The treatment for cancer is brutal but for most of us it is worth it.
Do you follow Liz O’Riordan on Instagram? I think she is on the same treatment for recurrent BC and has been feeling rough. Her posts are brilliant.
There is also the Stage IV thread on here. The lovely folks on there understand only too well what you are going through.
Sending sympathy

SummerCycling · 23/02/2024 18:50

@Enigma52 Oh I'm sorry, I hadn't realised you were new here. Welcome xxx

As @TopOfTheCliff says, there's no such thing as too negative on here.

Much love x

Enigma52 · 23/02/2024 20:11

@TopOfTheCliff thanks
It's bloody brutal, you are right.
I'm so angry and fed up. My health has been taken, my energy taken, my breathing taken... fuck fuck fuck!!
Oh and I'm SICK of seeing social media posts of healthy colleagues enjoying their lives! I'm bitter and resentful. This is my 3rd bloody cancer!!!!

I will check out Liz on Instagram,

Thankyou @SummerCycling also 🙂

Tilllly · 23/02/2024 20:27

@Enigma52
Your language is better than mine!!!

Tilllly · 23/02/2024 20:29

My son gets married tomorrow...

And I've got thrush!! FFS

Have sent DH looking for a pharmacy - I've got a thrush tablet in but I'm pretty sure I can't take it with clopidogrel and atoravastatin (which I'm on for a minor TIA, pre second cancer)

Insert swear words of your choice

lucysmam · 23/02/2024 20:55

Hi @Enigma52 👋

You're in the best place for a rant/moan...I do it allllllll the time. It helps! And everyone here gets it.

Ooh @Tilllly I hope you all have a fabulous day! Will Daisy be your +1? 😍

I have OH woes again 🙄 Work are refusing my request for in person, and it doesn't look like it'll be in working hours but they don't pay bloody overtime. And why tf should I do more work related stuff than what I've chosen to do for free! I create enough bloody resources for nowt! & how does one nurse have so many specialties she can make recommendations for several people with different conditions?? & why tf is it "optional" but it's actually not even though they're required to make reasonable adjustments under the Equality Act anyway?? But they reckon they "can't" without it? I do not feel the need to tell yet another stranger how often I go to the loo & that I had cereal that turns the milk chocolatey for breakfast ffs! It. is. doing my. head. in!!

SewingBees · 23/02/2024 21:06

@Enigma52 I'm on Letrozole and Ribociclib, started nearly 4 weeks ago so I am on my first week off the R. This won't help you at all but I'm actually coping pretty well with them both. Hot flushes at night, and mouth ulcers, but neither so bad I can't cope. It may however get worse as I have more cycles, and I'm also due Denosumab on Monday for the first time which also causes joint pain. I am fatigued, but that has been the case since November or earlier and as I'm still in recovery from major back surgery I think that may still be a factor.

Ribociclib is one of a group of 3 similar drugs, with Ribociclib being, I believe, the most recently developed and strongest, so also tends to give the worst side effects. My mum is on the first one they developed which generally has fewer/lower side effects. So there may be other drug options for you to try. Definitely worth asking for a follow up with your oncologist if you really aren't tolerating that combination well. Until then feel free to rant and rage on here (or the stage 4 thread that someone else mentioned and several of us are also on).

1Strawberrycat · 23/02/2024 21:25

My lovely cat Strawberry (who I'm named after) has died. My friend for 16 years. I'm so sad.

Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄
Tilllly · 23/02/2024 21:31

@lucysmam
She's not even invited
I might boycott

Tilllly · 23/02/2024 21:32

Oh @1Strawberrycat no 😥
I'm so sorry

She was beautiful

lucysmam · 23/02/2024 21:34

Aw @1Strawberrycat I'm so sorry 💐

lucysmam · 23/02/2024 21:35

@Tilllly that seems unfair! Might she fit in a pocket? Or handbag?

Fantasea · 23/02/2024 21:43

@1Strawberrycat I'm so sorry for your loss Xxx

TwigTheWonderKid · 23/02/2024 21:59

@1Strawberrycat, what a beautiful creature. I am so sorry you have lost your lovely friend.

Tilllly · 24/02/2024 02:31

lucysmam · 23/02/2024 21:35

@Tilllly that seems unfair! Might she fit in a pocket? Or handbag?

She's got quite big...

I've a friend staying over with her, I think she'll have a very good time at home.... there might be indulging going on

Tilllly · 24/02/2024 06:27

@Lostmymind11
Here x

Lostmymind11 · 24/02/2024 07:18

@Tilllly thank you

Lostmymind11 · 24/02/2024 07:20

Morning everyone, i think i may have been on here before 2yrs ago but i had a different username then when i was having all sorts of tests done and found i had a sarcoma on my colon. Well the operation was a success until now. Its back and in my liver. I am heartbroken for my child. I don't know what to do because all i feel like doing is shutting myself away and crying

TopOfTheCliff · 24/02/2024 07:43

@Lostmymind11 I am glad you have found us. Locking yourself away for a good cry sounds an excellent plan. It is good to get the feelings out. Bottling them up only leads to embarrassing leakage at inconvenient moments. Life is shitty and unfair and once you have had. a good cry you might want to smash up a few things in our virtual Rage Room. Is there a local Maggies or Macmillan Centre or similar? Who have you got in your support crew? Here’s hoping your oncologist has a good plan of attack ready to see off the unwelcome visitor.
I am off to 5k Your Way Move against Cancer this morning at my local parkrun to hobble round the track on crutches for a lap. There will be cake as it’s our 2nd birthday!

Lostmymind11 · 24/02/2024 07:52

@TopOfTheCliff oh i could use a rage room right about now. I only have my mum/dad and 2 friends. I'm a single parent and my child does not see dad. I am absolutely terrified about what will happen to him if i can't care for him or the worse should happen. That sounds like a fun morning, i hope you enjoy the cake

Enigma52 · 24/02/2024 10:15

@Lostmymind11
Just wanted to say hello and sorry to hear of the return of the beast sarcoma. I also had a sarcoma in the wall of my uterus. It was removed last November, through a hysterectomy. So under the sarcoma clinic for monitoring and the breast team for MBC.

Definitely use this space to rant and scream. It's utter shit, but we well get it, as opposed to pretending to understand.

I don't have any real people for support either. My parents are 150 miles away and my well meaning colleagues have disappeared! My best friend of 45 years, is no where to be seen!! I do hava a partner.

Anyway, you have us 😊
How old is your child?

Enigma52 · 24/02/2024 10:23

@SewingBees Thanks.
I was fine on cycle one
Cycle 2 was brutal and my week off riibo has been nothing short of horrendous. My whole body aches to the bones, headaches like no other and coughing. I spoke to the BCN yesterday and she said if I feel too awful, then ring the Christie hospital hotline. Suppose I had better do that. I had a CT scan 3 weeks ago at a&e and oncology decided the fluid didn't need draining. Will see what this week brings.

Think you are right, ribo is a fairly new drug. There's palbociclic and one other I think. They said ribo was meant to be the kinder drug!

Enigma52 · 24/02/2024 10:25

@TopOfTheCliff good luck and enjoy the cake! What a bonus at the end!

lucysmam · 24/02/2024 10:50

@Enigma52 the other one is Abemaciclib. I'm taking that & had no noteable side effects apart from hot flashes & even they're bearable if I adjust my clothing to match. My colleagues laugh at my layers & scarf that I take off/put on repeatedly through the day 🤷‍♀️

Enjoy your hobble & cake @TopOfTheCliff . Lovely to see you're doing so well!

@Tilllly have a fabulous day at your son's wedding! What's your outfit like?

We're just deciding whether to do...something...or stay in 🤔 my feet say stay in, but then I sort of feel like I should do something with dd2 since dd1 is out already <sigh>

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