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

@TwigTheWonderKid 🤣 don't worry! The amount of shit that comes out of my mouth at the moment!

@WrenNatsworthy thank you I'm sorry we are all here.
@TwigTheWonderKid glad you enjoyed York. A bump up to first class just finishes your trip nicely.
@Tilllly I hope they can get your pain sorted out and you have some positive news from your scan.

My chemo went ok. I've felt a bit off since but touch wood nothing too bad.

How long since chemo @GoldenDog1 ?

I had it Tuesday morning.
I'm on weekly chemo and I usually feel a bit off for the first few days then the aches and pains start for the rest of the week.
It's manageable at the moment though.
The chemo I was on before my surgery in November when I was still classed as "curable" put me in hospital each time so I'm just grateful that these side effects I have now are nowhere near as bad as that.

That's not too bad then

I've had 4 rounds - hospital after 3
Every time with an infection

@Tilllly how is the pain?

I've been Cyberknifed - took a Taylor Swift cd in and fell asleep near the end. I did get up at 6.30am to be at hospital for 8.45am and I've never been a morning person! I've been asleep on and off all afternoon, no other side effects 🤞

oncology appt was mixed results

There is no evidence of bone or liver cancer, so it’s not spread which is good

However, the CT scan is what he calls a complicated scan and falls into a grey area

Some aspects look better, the top left lung has re-expanded and the base of the left lung looks better as well.

But there are definite new lymph node involvement in both sides, especially on the right side, and this is a definite new change since the last scan

However, in a small number of patients having immunotherapy, there is something called “pseudo progression” - so whilst the CT scan shows the lymph nodes to be more involved which suggests more cancer, it can just be an inflammatory reaction to the immunotherapy

So the plan is to do another CT scan in three weeks -
If the lymph nodes are the same or similar, then I will stay on the Chemotherapy and immunotherapy plan that I am on now. If there is progression with the lymph nodes, either more inflammation or more lymph nodes involved, then we have to change treatment.

That treatment is what they call second line treatment, but is like the last line of defence as far as I understand it

A tablet called sotorasib

He wants to keep me on the chemo as long as possible, because once it’s been stopped, they can’t restart it
But if more lymph nodes are involved, then the chemo isn’t working and will be stopped

They’ve doubled the 2 morphine meds to try and combat the chest pain I have, he describes it as mediastinal pain, which is in keeping with inflamed lymph nodes

More pain meds @WrenNatsworthy so fingers crossed

If you're anything like me, some odd sensations on your head but nothing to worry about

@Tilllly How are you feeling in yourself having received your scan results today?

I had a talking therapy session with a psychologist at the Maggie's centre this morning. It changes nothing to talk about it all, and yet it changes so much. Had a couple of lightbulb moments and it's helping me deal with the uncertainty of my current position. I realised that emotionally a lot is riding on my next scan and whether the new drug regime has any effect or not.

I've been sent a telephone appointment with my radiotherapy doctor which I was surprised about. I wonder if I'm going to be recalled for more sessions. Has anyone had that happen?

I've also heard that my request for a new oncologist has been approved and I meet the new one in mid March, which is a huge relief. Everyone says he's really good.

This evening I had a phone call with my daughter and husband - they're away skiing. Daughter was really upset that she's not going to see me for a few days yet. How the hell do I prepare her for me leaving her forever? I've been blubbing since.

@WrenNatsworthy which Taylor CD did you take?

I have a question about cyber/gamma knife...can you feel it do it's thing?

Nope

Not a thing

And it's quiet too

Interesting. Not sure what I expected tbh though 🤷‍♀️ It's a bit of a mind boggling concept really.

I don't think we can prepare them in the sense you probably mean @SewingBees but loving them as much as you can will build a kind of security that will not die with you. Having, kind of, been in the similar position (my mum died when I was 20, my dad 2 years later and I was an only child so was completely on my own) I still feel their love and bizarrely our relationship still exists. They are not here to hug me or provide practical support but the foundation of love they gave me will never go away and the older I get, the better I feel I know them. I know it's going to be very hard for our children, but DS1 said to me that he knew he would be Ok because it had happend to me and I was ok. And it's true, I have missed my parents for over 30 years but I have tried hard not to be defined by their deaths and I have lived a really happy life. It has taught me to take nothing for granted and to cherish and nurture all my relationships with my little family and my friends. As a result I have a truly lovely family and amazing friends who have been such fantastic and unwavering support and love.

Midnights!

They made sure the volume was what I wanted. The only sound I heard was the machine changing position. It wasn't loud like an MRI. They told me it would take 53 minutes, and if I wanted to have a break I just needed to wave and they would stop it so I could stretch, sit out for a bit, whatever. I didn't though - I fell asleep for the last 10 minutes!

Oh and no, felt nothing!

Morning all, how's everyone doing?

My peaceful week finishes today with the family coming back from their skiing holiday. I've enjoyed the quiet but looking forward to seeing them all again. Taking my daughter to visit my sister for a few days on Monday which will be a nice change in routine. Hoping for good weather and some nice (short) walks on the Yorkshire coast.

Haven't experienced many side effects on the Ribociclib but in the last few days I've been getting a sore mouth and ulcers on my cheeks. I'm going to have to give up eating crusty bread and it's my favourite thing ☹️. On the up side I'm needing fewer painkillers each day as my back gets stronger. It'll never be quite the same again but it's a lot better than when the vertebrae first collapsed. I've been walking the dogs every day and going further each time.

@SewingBees that's brilliant that you've been determined to strengthen your back and are succeeding - small victories.

Salt water to soothe your sore mouth?

I'm 2 days post cyberknife and last night I woke up with a horrendous pain in my neck, no idea if it was related. Paracetamol, ibuleve and the last of my oramorph got me back to sleep.

I did feel able to go out yesterday evening with DH to a 'paint along with Bob Ross' event. It was really good fun, unlimited booze (I only had one peroni) and all materials provided. We really enjoyed ourselves and did two paintings in the 2 1/2 hours.

Don't overdo it @SewingBees 😙

I'm feeling a bit low actually - shld feel better knowing it's not bone cancer etc, but waiting for another CT scan, hoping the lymph nodes are down to the immuno... I've never had a test with good news, so just assume it'll be the cancer and the chemo has to stop

Which I don't really understand given the tumour seems smaller

@WrenNatsworthy could it just be from the positioning for the cyber knife?

De-lurking to let you know I am eavesdropping on you all. I don't have cancer (I hope), but my wife has lung, liver, and bone. I'm reading this thread to try to appreciate what she is going thru. She is currently in hospital, and has, perhaps, a few months to live.

One of the frustrating things (for me) is the lack of communication with the oncology doctor. I don't know if she has lung cancer, which has spread to the bones and liver, or the other way round. In the week she's been in hospital I've spoken to her doctor twice, once for 2 minutes, the other time for 5 minute. Very nice, very clear prognosis, but... don't mind me, I'm just babbling.

We are currently awaiting the results of a liver biopsy and a bone scan. Nothing will get done on the weekend, of course.

@CanadianJohn I'm really sorry to hear about your wife. Has she only just been diagnosed or have you known for a while?

My wife is 82, almost 83, and has been very lethargic for months. She is very stoic, refuses to admit to any bodily weakness, hasn't seen a doctor in 4 years. On Sunday, she seemed a little better, but Monday was much worse, and I took her to ER. Tuesday we were advised of a mass in her lung, probably a tumour. Wedesday she was moved to the cancer floor, Thursday we were advised the cancer was widespread, and terminal. So we are in shock, as are the children.

This has all happened in a week. She desperately wants to come home to die. There seems to be always 'one more thing' the hospital want to do, but the woman is dying. I think we will bring her home in a couple of days, with or without the blessing of the hospital.

I am totally out of my depth.

@CanadianJohn I'm so sorry sorry to hear about your wife. It's obviously an incredibly hard time for you both and you really need a good professional support.

This thread is really for those of us who have a stage 4 diagnosis ourselves. There is an excellent thread for the relatives of people with stage 4 cancer who will a good source of support and advice for you. Here.

You should also be referred by your hospital to your local hospice. I'm not sure if you're in the UK though?

@SewingBees Crusty bread is one of life’s great pleasures, it’s shit when you have to go “easy” on something that tastes so good. I decided to go for poached eggs yesterday at breakfast time. I took DS to a hotel in another city for the night and they didn’t serve any other kind of eggs. I will never do it again as I was wrecked with guilt afterwards. Poached eggs are the only way I can eat eggs. Hate hard boiled eggs (hard yolk & egg white 🤮). And am indifferent to scrambled. Can’t stand fried eggs either.

@WrenNatsworthy How is the neck pain? I hope it has eased off. And I love watching Bob Ross on TV, sooo sothing. I watched Netflix series on his life and the battle for his estate after he had died.

@Tilllly When is your next CT?

Feeling really low today, all I can feel like saying is “F *off!” to anything. Just the thought of my future hopes and dreams being erased, stuff like that.

Top of my right leg has been getting stinging sensations since Saturday, of course my first thought is that the cancer is now in my bones. Just the thought of any kind of progression while I am on nab Paclitaxel is enough to send me into an intense “F* off!” mode.

And if I hear any more of my mother in law’s “You just need to live one day at a time.” spiel, I may just be responsible for a first degree murder. Or “One of us could be hit by a bus tomorrow.” Well, I am already under the bus, waiting for the wheels to go over me. Argh!

@CanadianJohn So sorry you and your family have to go through this. I hope that the link above is helpful even just a tiny little bit.

@balkanscot
11/03

They were going to book me in the week before but that wasn't quite the 3 weeks he'd said, plus I've a lot on that week

And I sort of think the longer it is, the more chance of inflammation, if it is inflammation, going down and therefore being able to stay on chemo

No logic to this, I know but 🤷‍♀️

@CanadianJohn I'm very sorry to hear about your wife but I hope you are being supported.

@balkanscot I'm sorry you are feeling low today.
I hate days where I overthink everything.

I went for my pre chemo bloods today.
I've had a cough and a cold for a few weeks that I can't seem to shake off.
They took extra bloods to check for infection so I'm keeping my fingers crossed everything is ok to go ahead with my chemo tomorrow as I really don't want them to pause it while I'm waiting for my CT scan in March to see if it is doing anything.