Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

Hello, may I join you all? I had a malignant melanoma which spread to my lungs. Been on immunotherapy about a year. Scans have shown tumours keep progressing and oncology have decided that drug is not working. I've just started a new drug but you can only have four rounds of that. They are extremely vague about options after the four rounds.

Hello all,
having a pretty shit week after chemo last Thursday… known secondaries in my right hip, and I’ve got awful pain in my left jaw bone… if I didn’t know better I’d think I had an undiscovered fracture there! I’m on oomorph for pain, but I feel like it’s not enough… am I being greedy? 🤣

Evening all. I’m also so sad about @Walkingnotrunning1but I have seen her husband has posted some photos in happier times on her FB stories in the last couple of days. I’ve been keeping her family in my thoughts.

All good here, next round of CA125 tests in the next few weeks. It always goes up so I don’t know why they bother with this instead of scanning. I fell down a step last week and broke my foot, this bloody osteopenia from chemo is a pain. And of course I never had a fall in my life until my bones turned to dust where I suddenly became Mrs Clumsy. I’m praying I am still stable.

Hello @saveforthatwelcome to the group. It’s the best group of people and we all welcome a rant and moan.

@stokeymum39sorry you’re feeling poorly, chemo bone pain is horrible.

@saveforthat welcome. One of the group's members, sadly no longer with us, successfully challenged a bizarre "you can only have x rounds" rule and it gave her an extra year at least. So be prepared to fight.

@stokeymum39 can you speak to your GP about pain meds? Before my last back operation I had a lot of pain and found zomorph (slow release tablet form of morphine) a lot more effective than oromorph, and with fewer side effects.

I’ll try that sewing bees. Thanks. Xx

will update later on my situation but re pain relief @stokeymum39 Zomorph MST with oramorph top ups is the bees-knees & make sure you take some paracetamol with your morphine. They work in unison. You need to work with pain team to get right level of Zomorph so you only need occasional oramorph top-ups.

@stokeymum39 I echo the above re: pain relief. Or, you could try the same regime but with oxycodene MST/ paracetamol and liquid for top up.

I prefer the oxycodone, as it gives me fewer side effects, but the main thing is that your pain is reasonably under control.

Unknown primary @EachandEveryone

I have had my next scan through in early march. That’s fine, compared to a lot of you I’m very early in my journey. I just wish they’d worry more about the lymphangitis and less about the primary breast cancer. I’m lucky that I have health insurance and I’m debating whether to try and find a second opinion on the lymphangitis as, since I stopped the chemo the inflammation in my lungs has got worse and I’m using more steroids to try and keep it at bay. I’m on my week off of ribociclib at the moment so have an oncology appointment next week where I’ll get my next ribociclib prescription. I think I’ll bring up the lymphangitis again.

one of my friends daughters has viral meningitis. I feel rubbish the I have to avoid her but I don’t think I have a choice.

Welcome to the group @saveforthat. I don’t post very often as I think I’m probably behind the others on their journeys, but I do check in and keep up to date. I’m sorry you are on this path too 💐

@AGreatUsername I fell at Christmas and broke a foot too. Bloody annoying! I also fell down the stairs yesterday, although that was only 2 stairs and I sort of flung myself so that I didn’t hurt my feet again. I hurt my knees instead! Oh well… I hope you are okay and Mrs Clumsy can avoid the falls in future.

Just thinking about the pain relief question, and the discussion at the end of the last thread that led to this thread's title, is anyone still taking medical marijuana?

Yes, me. I take oil at night for sleep and to help me temporarily “ forget” this 💩 storm.

I've just spoken to the chemo ward, and they have told me i should've had an injection with my chemo last week, but they hadn't heard from my dentist that he'd done a dental check, so it didn't happen. I'm in so much jaw pain it makes me feel tearful instead of angry, and I'm wondering how I'll eat my lobster thermidor being delivered from Rick Stein tomorrow as a treat!!
I also take a fairly high strength gummy before I go to sleep. x

Welcome @saveforthat , I'm a fellow melanoma stage 4 sufferer. Sorry to hear you haven't responded to treatment so far. What is the 4 dose drug? I was given 4 doses of ipiluminab at the start of ny treatment and was told that it was limited due to side effects (I had some very high temperatures but was ok afterwards). Its worrying, yes, when you're not told much about possibility future treatments. I hope things improve for you.

Thanks. Yes it's ipilimub I'm on now. I was on pembro before.

I can not go into the shit show that my life has been these passed few days. My temp keeps spiking up amd my sugars are up. Ive been to ITU and back with an eight hour wait for an ambulance in between. I know have a side room in the geriatric ward and its bliss.

the medical oncologist has been quite pushy saying i need to know my prognosis so they know how to treat me going fortward

Sorry to hear that @EachandEveryonesounds very hard. Sending best wishes.

@EachandEveryone are you still on the immunotherapy? Sorry it’s so tough.

Shit show describes my life too. I’ve a sneaky feeling the b***d cancer has moved to my liver. I’ve a strange ache in that area. I’m terrified of it all. Tomorrow I sort my funeral out (well look at different organisations and prices). It’s just a living hell.

@EachandEveryone I saw your other post, have you managed to shake the strange nurse?

When you say the medical oncologist has been quite pushy I can't work out if this is a good or a bad thing. Can you explain?

Is your wound any better now you're in hospital? Presumably it's being dressed regularly?

2 weeks until the ultrasound of my neck lump. I've convinced myself it's Hodgkins Lymphoma and I'm headed for IV chemo. Again.

Medical doctor was pushy at me to
get a prognosis off my oncologist as he said it will affected how I’m treated going forward.

im just having my second blood transfusion in three days.

the tvn came and fashioned a bag onto it. My life has changed already even if it’s just for tonight. Fingers crossed it stays on and it gets handed over properly to the community nurses. The smell has gone. That fluid has got to that point after only 30’minutes so
omagine how much I was losing?

I’ve had a port fitted today in preparation for chemo starting on Thursday. I’m having doxorubicin which is supposed to be vile. I was supposed to start last week but got norovirus instead. Thanks crappy immune system.
we managed a very tiny mini-moon & went to Loch Ness for 3 days. It was bliss.

I’m very interested in medical marijuana - do folks just order online?

Hi :) I have stage 4 melanoma, plus another cancer which is currently behaving!

I had 4 rounds of Ipilimumab & Nivolumab then single Nivo which I’m still on and will be until it stops working, I had tumours in my lungs and liver but they all fucked off after ipi/nivo There is a Drug combo called enco/ bini that can be used if ipi doesn’t work

Have you joined the group ‘Melanomates’? I’ve found a lot of support In that group!

Are you Braf - or +?

@EachandEveryone fingers crossed that works. Why the blood transfusions?

@Sausagesforever I had Doxorubicin for my primary BC, mixed with something else. It was fairly awful, not gonna lie. Take the anti sickness pills and the steroids - they make a huge difference. I found the worst day was when the steroids ran out but I recovered well by the end of day 4. How many rounds do you have to have?

Yes, I have joined melanoma mates. I'm not sure about the braf thing, it's never been mentioned.