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

[Tilllly]

New thread
All welcome, reluctantly

There is an issue with paracetamol because a clerical error meant they thought they had overdosed me when they hadn't. I had to love bloods taken in the middle of the night and got mansplained at twice when I said I was sure I hadn't.

So they are giving me 1 paracetamol every now and then which is fucking pointless.

I'm on a very low dose of slow release morphine which is utterly pointless. Last night I kept at it and eventually the doctor on the phone agreed that I could have a morphine injection 4 hourly. It is ok but nothing has touched the one pain.
I've been told the Doctor is reviewing my pain meds with me but he's not turned up.

@WrenNatsworthy You shouldn't be having to fight this hard for decent pain relief. You must be so exhausted. Has there been any progress?

@WrenNatsworthy

When I was in and struggling, the best help I got was asking for someone from the Palliative pain team to come down, and also speaking to the ward Sister

I found it very difficult to come to terms with, they just did not seem to care how much pain I was in

As hard as it is, you need to complain and keep insisting on seeing somebody

@WrenNatsworthy I echo what @Tilllly says. The palliative team are like pain ninjas and will definitely sort you out.

Huge hugs to you, lovely lady. I'm so sorry that you are not receiving appropriate care.

All is well, palliative care came, put me back on liquid paracetamol plus morphine tablet.
Game changer. Just woke up for the toilet and didn’t need extra pain relief!

Blessings upon you all, the relief has brought me to feel magnanimous. Espresso Martinis all round m.

Haha! @WrenNatsworthy Result!

Mine's a lychee martini or a good margarita w. crushed ice and freshly-squeezed lime if that's ok though 😁

Woohooo @WrenNatsworthy

Thank God for that
Honestly, they are amazing
So glad the pain is being beaten, get lots of sleep

This is great news. I am so glad you have relief from the pain.
Thanks for the Espresso Martini. Cheers! 🍸

@WrenNatsworthy I'm glad that they have got your pain under control .
I've got an appointment with my oncologist today for scan results. I have refused to think about it all week .Instead focusing on my sons birthday( which was lovely) but now all the anxiety is crashing in.
The major sugar crash from the sticky toffee pudding I made yesterday isn't helping!

@WrenNatsworthy a bit early for Martinis but I'll raise my coffee in cheers to you and the lovely drugs.

@Florsilvestredelcampo I'm seeing my new oncologist today too. I'm not getting scan results but I do still feel a bit nervous. Good luck to you. I'm desperately hoping this new oncologist is more forthcoming, proactive and human than my last one.

@SewingBees Thankyou. My oncologist is good,makes me laugh, is compassionate and listens. I hope your new oncologist will be too.
I found out more about my oncologist when I found an episode of ' Rich holiday poor holiday ' that he had taken part in ( his usual holiday is not the poor/normal one!)

@Florsilvestredelcampo that’s hilarious- it’s my oncology nurse I’d like to see on that - might loosen her up a bit. So downbeat all the time.
Oncologist is straight talking, but can have a laugh too

Good luck to all seeing their oncologist today. And for your scan results @Florsilvestredelcampo

I wish my oncologist was a bit more upbeat and positive. She's so non committal and guarded that it lets my worst thoughts win every time. I just want her to say it's not over and we can buy loads of time and I might have years and years and years. Instead she just says hmm.

I have my 3 monthly torture scan next week. No results until 11 April though due to Easter. Last scan showed stability and I'm so desperate for the same, but equally unable to allow myself hope for that.

Well I had a good appointment, feel comfortable with the new oncologist. @AGreatUsername your oncologist sounds like the one I ditched. She said Hmm a lot.

He queried my blood test results that suggested I was post menopausal - said the residual Tamoxifen in my system could give a spurious result. And without the drug to turn off my ovaries, I forget what it's called, it would make the letrozole ineffective. So more injections for me but also some reassurance that my situation is being looked at holistically.

Scan and another appointment in 4 weeks time. He told me to be optimistic that the Ribociclib will work for a good while as there's no reason, yet, to suppose otherwise.

We also had a brief but good discussion about the pros and cons of ill health retirement and I think he'll be helpful and supportive with that when I need him to be. His parting words "I've got your back".

@SewingBees l am so pleased for you. Sounds brilliant.

My news - my hb level is stable!
The reason I had such pain after the procedure is because I have a fracture on T7 of my spine, so lying flat for 5 1/2 hours is what caused that. Palliative care team ordered it yesterday after sorting my pain relief. There is a possibility it might be a met but it's tiny currently.

They are just checking over all my pain relief and they might add something extra, but I'm being discharged!

@WrenNatsworthy I'm equally pleased for you. Do they think the spinal fracture will heal on its own?

If it is a fracture, yes x

@WrenNatsworthy - so pleased for you xx

My appointment today was ok the scans look clear, however they haven't been seen by the radiologist yet. It's possible that they will see something he can't but he's fairly confident they won't. My rising ca125 indicates that something is going on and he feels that at some point I will need more chemotherapy.
I was so sure that I would be back in treatment in a couple of weeks it took me a while to comprehend what he was saying

@Florsilvestredelcampo I am the same. Recent scan was good, but Ca125 has been doubling. Last chemo was 1/11/23, really hoped to get longer.
Problem is if this cancer comes back quickly then they can say it’s platinum resistant- so treatment options get more limited.
Hard to get my head round, because I feel
so well just now.

@RedRosesPinkLilies my oncologist said today he believes you should treat the patient and not the cancer. As long as I'm feeling well he is happy,obviously if that changed or treatment was indicated then treatment would start.
He also said that ca125 levels didn't always correlate with the amount of cancer and that sometimes they see ca125 rising but when they look at scans smaller amount of cancer than the figures suggested is found.
So the plan is to carry on with Niraparib and to monitor .
I think that even if Niraparib isn't doing everything we want it's maybe doing enough to keep us well, (just my theory no science at all) After every appt my onc will always say "Go live your life and enjoy this time" and I think that is all I can do x

@Florsilvestredelcampo
I like your oncologist! And I do agree with him; my last scan said cancer stable, and even reduced in one area.
Its so good to share this situation with someone else.
Im also on nipararib

Some of your Oncologist's sound wonderful.
My Oncologist doesn't offer me much in the way of information at all.
I know I should ask but I sometimes get overwhelmed when I see him as it's always negative news.

@WrenNatsworthy so pleased you are going home and things seem a little more positive.

Fingers crossed for positive news for everyone waiting for scans or waiting for scan results including my own.
I would be grateful for just the teeniest bit of positive news.

@GoldenDog1
What about the nurses?

I email any questions for them and they rang me up and we have a nice chat. They get all sorts explained to me and sorted out