Thread #5 for those living with incurable cancer, supporting each other and remembering the lovely friends we've lost along the way

[SewingBees]

New thread, an open invite to anyone living with Stage 4 cancer to share your worries and joys and just generally chit chat about whatever you're going through today x

Yay 🥳! @EachandEveryone

I'm just off to the applicant day at Westminster uni with dd1. Up & out early a f for the train 🚅. Late ish train back so we have time to be tourists for a little while too.

@EachandEveryoneI am so so pleased for you!!

@EachandEveryone great news xxx

@EachandEveryone Fabulous news!

Does anyone know what it entails? It’s Nivolumab. I don’t understand it at all, is it as often as chemo does it take forever to give? Will my hair fall out

My niece did uni at London and loved it. The accomodation is dear but hers was brand new plus they get extra loan top ups she never needed to work through it. What’s he studying?

I’m on Nivo for my melanoma. You won’t lose your hair. It’s usually every 3 weeks and it takes about 30
mins to give.

you’re more likely to get autoimmune type symptoms, like pneumonitis, thyroid issues (usually hyperthyroidism and then it burns out), rashes are common and a really good indicator that the immunotherapy is working, as is vitiligo, you can get liver issues and they’ll monitor you closely for that, colitis is very common and they can sort it with either steroids or infliximab, don’t just suffer with the colitis as it can be easily treated. One of the main things you need to be aware of is adrenal insufficiency as it can fry your adrenal glands and you’ll need steroids to fix it (I got that and my thyroid went mental and now I’m on thyroxine)

also fatigue is common

one thing I will say that I got was Pseudoprogression where the tumour in my lung got bigger at the first scan and then disappeared entirely at the second. As you can see and feel your lump don’t panic if it gets bigger and you can feel a difference, it’s an inflammatory response to the immunotherapy and will go away, in many cases entirely.

i know you don’t have a diagnosis of melanoma but if you want to get some support from people going through nivo (although melanoma you also get Ipiliumab too for 3 treatments) then join Melanomates on Facebook and tell them you have unknown primary but might be melanoma and want some support. They’re so so nice and friendly and helpful and you have the chance to talk and vent :)

Hair gone ( super super short!) Feel much better!!

Yay! I’m glad you feel better :) my treatment has changed as I had a massive reaction to the chemo 2 weeks ago so start that next week. Apparently I don’t lose any more hair on it so I have washed my disgusting hair today and lost loads but it’s thick and I don’t think you can tell 🤞

Ah that’s good! I had hoped to have kept my hair, but it wasn’t to be. But I do feel better. Shedding hair was just too traumatic!

What type of chemo will you be on next? Is this for the melanoma or endometrial sarcoma?

Chemo is for the sarcoma, immunotherapy is for the melanoma as I’m ‘difficult’ and have 2 cancers at once. I’ll be on Trabectedin which is quite high up in the list of treatments as I had an a shocking allergic reaction to ifosfamide. Why do they all have such stupid names??

I also have two cancers . Metastic breast and the stupid leiomysarcoma. I’m due my second doxorubicin on Wednesday ( eek!)

Fingers crossed you tolerate the next drug better 🤞🤞

@EachandEveryone she's applied for Law there & Brighton. But she's starting to have a bit of a wobble & been talking about taking a gap year.

Would she get a job and save in that year do you think? I wonder if she doesn’t want to be far from you? It’s difficult as uni is such a good experience but if she’s not ready. Did she look at Leeds? Maybe she will feel differently once the results are in and all her mates are excited.

@Enigma52 it does feel better doesn’t it!

I just popped on to the great recovery thread and it has made me (irrationally) angry and bit sad it all seems so bloody easy and so far removed from my situation. I've probably should stay away from reading these threads it like a form of self destruction.

@Florsilvestredelcampo Its a very different world if you have a cancer that can be treated or managed for a longtime
I know someone who has complained to others that she feels I get too much sympathy for my Stage 4 ovarian cancer. Her words are that ‘people forget I had cancer too’
Yes - about 7 years ago now. Stage 1 Breast cancer, seems cured by surgery. No other treatments. I get it was stressful at the time

These days that situation would make me so happy!

I’m on co amoxiclav now I really hope it doesn’t delay the immunotherapy. I’m quite down the stink of the abbcess is making me feel sick. I just want to be warm in bed I’ve been freezing today. My ankles have got so skinny I’m scared this immunotherapy has come too late.

my sister is down to help me tomorrow for afew days. It will be strange just me and her without any of her children there to divert her from talking to me. We are so different she’s the sensible motherly one and, I’m not 😀

@RedRosesPinkLilies I can't believe someone who is effectively cured (at least for now) is complaining that you get too much sympathy. How can anyone with a terminal illness get too much sympathy? There's not enough sympathy in the world for our situation 😡

@RedRosesPinkLilies stage 1 BC, cured by surgery?? Fucking hell, that’s the dream isn’t it?? My mum made me laugh. My brother has a “ lump” on his arm. Alarm bells 🔔 ding ding cos older sister has a habit of growing cancers better than flowers! False alarm..it’s just a cyst. Fuck me! A cyst!!

Oh and where are these people happy to “ help” ?? Still waiting for my neighbour to invite me in for coffee. Saw her Sunday at the bins; she pretends not to see me ( I’m standing right there in my purple turban!

Eejits!! 😡😡😂🙈

Another thing that annoys me, is when people post on the cancer forum, about lumps. bumps, rashes and whatever else, saying they are “ terrified” it’s cancer! Really? Some of us actually DO have cancer. Then you get the “ don’t worry, age is on your side, 99% of lumps, aren’t cancerous! Really? Well it could be, you know!

Grrrhhh.

Thanks everyone. Her comments really really irritated me when they got back to me. X

@RedRosesPinkLilies oh wow, I don't have any words. How can you have too much sympathy with a stage 4 diagnosis?
She sounds like a fucking cockwomble to be honest.
I just can't get my head around someone saying that, I really can't.

@Florsilvestredelcampo I tend to not read those threads. I just can't relate to people who are on the road to recovery.
Same when I go for my chemo.
I used to chat to a few people, but they were still classed as 'curative' .
I found myself going in for chemo and choosing to sit at the opposite end of the unit.
It's not because I wasn't happy for them, I was, but I couldn't relate, I felt envious and I felt sad.
These days I just sit on my own, put my ear pods in or try to sleep through it.

@Enigma53 oh yes, the happy to help brigade that like to say it, but are never seen again.
I think it's some sort of secret cult they belong to.

I had chemo yesterday, and so far I'm not feeling as shit as I did last week.
I am up and about and ready to go and get a bit of shopping later on.

I've booked myself on a coach trip for Sunday.
My daughter is now coming with me.
@SewingBees I will be heading to near your neck of the woods I believe.
The weather doesn't look amazing, but I'm really looking forward to getting out for the day.
I've done a few coach trips now and they make a wonderful cheap day out.

@GoldenDog1 I'm laughing because I was looking at a coach trip to near you the other day! You and your daughter would be very welcome to pop in for a coffee, though your coach would get stuck in my village so you'd end up staying overnight 😂. Whereabouts is your trip to?

@Florsilvestredelcampo where are you up to with things? Did you have chemo the other day? X

Chemo 2 for me today. I feel sad because the sarcoma oncologist (4th I’ve seen now!) didn’t seem very optimistic at all. So with that and my loss of hair, I’m thinking what’s the point!!