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

[Tilllly]

New thread
All welcome, reluctantly

Oh I absolutely agree with that thinking point @RedRosesPinkLilies . Ive noticed some are way WAY too anxious to make a diagnosis/differential while you are talking and then get things to 'fit' what they think it is, rather than the other way around. Or that reliance on the treatment algorithms because (im assuming) going outside of them will = more work and surely YOUR case wont fall in the 20% outside the normal distribution of what it could be. Its rolling the dice over and over and expecting/hoping to always get a good outcome when ongoing luck wont always last. Not to mention its literally impacting people's lives.

@RedRosesPinkLilies
I put the official complaint in after being encouraged to do so by my occupational health doctor , a matron and a nurse on one of the wards I was on.
They were absolutely disgusted with what I've been through to be heard.

All I want is an apology and for them to admit their failings but I really don't think my complaint will get anywhere.
It saddens me because if they can't admit to their failings then they won't learn from them meaning someone else will have to go through what I have.

I rang today for my test results from my first scan since starting treatment. The scan was 2 weeks ago and results are back but I can't have them until my 14th March telephone appointment. That's 2 weeks away! Surely that can't be right. I am close to contacting news media now, this is just next level shit.

That happened with my last CT scan as well. They had the scan back and I was in an isolation room for four days with a clot and an infection, and they still wouldn't discuss the results of the scan with me. I had to wait till I was out and back, seeing the oncologist.

I think it's something to do with the radiologist doing a report, rather than the scan itself

Hi everyone, relative newbie here. Recently diagnosed with stage 4 glioblastoma in multiple locations so surgical removal not an option.

Im 46, married (been with hubby for 20 years this year!) and we have 2 little girls currently aged 5 and 11.

Im due to start radiotherapy and oral chemo next week, as without that I have a v poor prognosis of 3 months to live, and diagnosis was delayed ( I presented with a seizure on December) as I’m not exactly an easy case!

Im trying so hard to be positive and happy, and make the most of each day, and have a positive mental attitude. My Plan is to take all the treatment they offer me (no drugs trials available apparently) as I want to be around for as long as possible for my husband, girls and family. I want at least 5 years with them, more if I can - as long as it’s good quality positive happy time and I’m still “me.” I know that’s a big ask but I’ve always been stubborn 😀

The two main issues I have at the moment, and it’s still really raw as I only got the diagnosis about 10 days ago are:

1. I’m really struggling with feelings of guilt - I just hate how this diagnosis has thrown a grenade into my family’s world and turned everything upside down. I know I’ve done nothing to cause the tumours, and that I need to let the guilt go, but I’m finding it really difficult as to how to actually do that…..
2. As well as the girls, I’m so worried about my husband - he’s been so fantastic keeping everything together for me and the girls, whilst still working (and his bosses are being fantastic with him) but I’m worried he’s not getting all the support he needs. His parents and sister live about an hour away, as do group of childhood friends.We are both sleeping really badly, are tired and snapping at each other more than usual which really doesn’t help 😓 He’s treating me like a child who can’t do anything and I’ve always been extremely independent since childhood, so this is a real struggle….

we both know that we need to communicate better, and we’re definitely working on that - the issue is that’s it’s just all still so raw and difficult at the moment. We’ve both been into Marie Curie at the hospital which may be able to signpost further help, but if anyone has any other tips or tricks in the meantime I’d be really grateful.

I have a great family support network - again unfortunately not local - 2 sisters and my dad. Unfortunately I don’t have my mum, who knew me better than anyone and I know she would have set me straight (even if I didn’t want to hear it😀 ) She died 10 years ago from pancreatic cancer

love and hugs to all

xxxx

Hello gorgeous ones. Thanks for starting the new thread and honouring Mowly @Tilllly .

I've just had some oramorph so that's my disclaimer.

I'm 51, Mum of 17 year old PFB and only child, wife to a very nice patient DH.

This is my story, copied and pasted from my intro on the last thread.

I have a rare cancer that nobody has heard of - Ocular Melanoma.

In April 19 I was diagnosed (massive tumour in my left eye that grew secretly for ages and didn't initially affect my vision), 2 weeks later my eye was removed. It's a nasty cancer with a high metastatic rate, so you get 6 monthly liver scans as that where it usually it goes. Metastatic cancer was confirmed in my liver in March 20. Hello stage 4.

I had immunotherapy which is much more effective for ordinary melanoma, it caused lots of side effects and I eventually had to stop.. I now have pancreatitis, diabetes and arthritis from immunotherapy.

There is a liver directed treatment that works for OM mets in the liver - we often can't have resections because the mets 'pepper' - lots of little tumours everywhere that grow. It's called Chemosaturation and it's not available on the nhs so we fundraised for me to have 3 treatments in 22, and it worked. Liver tumours inactive and stable, shrunk considerably. Had it done at Southampton Spire and they were amazing.

Back to the NHS, and regular scans. Unfortunately Mets popped up in my lungs. Onc's advice was to go off treatment and concentrate on quality of life. Since then a met was discovered in my brain -'I had cyberknife 2 weeks ago today.

Currently on bed rest because I was severely anaemic and I got blue lighted to hospital last week where they put 4 blood transfusions into me. GP admin fucked up and put me on a routine list to test my blood, district nurse is coming out Monday now.

Meanwhile oncology team in Birmingham are absolutely horrified and trying to sort stuff. I shouldn't have been discharged really without them making a proper handover to Birmingham. Different trusts. Poor NHS.

Anyway I'm still using a commode, being light headed, lying around in bed like a Queen demanding things.

Anyone is welcome to George. I am done with him <casts George aside in a devil may care fashion>

@WrenNatsworthy wow, thats quite an update at the end - sometimes its frightening to think how much bad admin is costing people their potential lives. I had worsening potassium for months and it had just dipped into critical in early Feb, like a tenth or two above a point of hospitalization. Even then someone was supposed to call me who didn't and the supplements were delayed two weeks. Sometimes it feels like my nurse is apologizing all the time.

I found my queen pillow pose - you take three parts normal pillows stacked on top of each other, then kay a body pillow lengthwise at the base like a big sausage. When you recline you get aaalll the support; felt like I needed a tray of bon bons at hand.

@Englishrosegarden @Tilllly

That does seem like a very long time to make someone wait for scan results. They must know that these scans cause high anxiety.

I have my next CT scan in two weeks.
I am very anxious about it.
However I had already booked a few days away in what should have been the week to see my Oncologist and get the scan results.
I'm still going to go away and will get my results the week after instead.
I'm finding myself in the strange position of being in no rush to receive my scan results.
This is probably because I've never had any positive news from my scans. In fact I've never had any positive news from any of my Oncology appointments so I'm feeling anxious about the results as I know there are not many options of treatment left for me if this scan shows it hasn't worked at all.

@Iaspo I'm sorry to hear you are going through feelings of guilt.
I do understand the guilt as although my children are adults I feel like I'm letting them down and I've turned their worlds upside down.

I also understand the mum thing.
My mum died suddenly 12 years ago from heart failure and I just wish I could get a hug from her.
On the flip side of that, 40 years ago my mum nursed my dad through exactly the same cancer I have and if she was still here she would have been heartbroken to find me in the same position as my dad was all those years ago.

Wishing you lots of peace and positivity x

@WrenNatsworthy wow you have really been through it.

I have only recently heard about chemosaturation for the liver as I follow someone on Tiktok who is also fundraising for it.
I think they are going to Germany to receive it as although it is still very expensive they said it was cheaper than here.

On the same note I watched that person's wife on a live last night.
She said up until now they haven't been able to do much for her husband but since going to the press the Oncology team are now talking about different things they can try.

I'm so pleased for them but also find it worrying as that just strengthens my belief that sometimes the NHS gives up far too easily.

I'm exactly with you @GoldenDog1

Every test, scan, appt - it's been bad news each time

Often the worst option it could be

My thing is with scans has generally been, well at least they can't shock me and tell me I've got cancer again. Until I got that letter in Feb when I googled that I'd got a brain met I thought I was unshakable. Pride wenteth before my fall.

I think I feel a little better today. I'll do a few things slowly. I want a bath but that might be a stretch.

@Iaspo I can totally empathise with the guilt, although I've managed to come through the worst of it now. We didn't ask for this. I have cried and said sorry to DS and DH to the point where they just tell me, fondly, to fuck off now. I still manage to run the life admin for them both and have set nice things in place for after I'm gone.

It was really good to read everyone's stories again on the intro.
We have all been through so much and we are fucking brave so there.

I'm very sweary today. This is a good sign.

@Englishrosegarden I am just up the road from you in Worcester, but mainly under Birmingham QE. I am horrified to read of your ordeals.

@Tilllly I hate that you're in pain, nobody should be in pain.
2 weeks seems a long time to wait, can you ring them and cry?

Just found this group. So haven't seen the previous ones. I was diagnosed with breast cancer in June 2020 , early 40's had a mastectomy , and told spread to numerous lymph nodes, then had chemo and radiotherapy. No one ever mentioned secondary cancer to me! Became unwell in April 2023, sent for a scan told my breast cancer had spread to my liver, first oncologist told me I had 2-5 years to live. I asked for second opinion, went to a cancer unit in London. Treatment plan changed, and told to ignore the previous prognosis. Spent the last few months getting my head round it all. On ribociclib , letrozole and zoladex. Got two teenage children, who have been amazing , be nice to speak to people in a similar situation

It's driving me mad

I could get an earlier appointment but it'd be with a nurse

This is with the consultant so we think worth hanging on for.

11 more days

Hello @loopyloolou
I'm sorry to see you here but you're among an army of support now

Exactly @Tilllly.
Just once I would like to be given a bit of positive news.

@Iaspo Feelings of immense guilt, indeed. They keep on at me every single day purely because once I am done, my DS technically becomes an orphan. And that’s a huge pill to swallow, that I am going to so massively let him down. So I keep telling him a million times a day how much I love him and what a much wanted baby he was. Just “building him up” with the facts that I will not “leave” him because I didn’t love him. It is so, so hard. Will you taking Temozolomide? I wish you all the strength because my DH had glioblastoma so I know exactly the situation you and your family find yourselves in. Big hugs!

@Tilllly Yep, my last 2 scans have been nothing but shit. Not sure how to feel about the forthcoming one on 8th April.

As for the waiting time for scan results, don’t get me started. My GP had to chase the hospital up in the run up to my stage IV diagnosis - it took almost 3 weeks! And to think everyone was saying to me that no news is good news…. 🤬

Saw my oncologist yesterday for a catch up, she said she may be able to phone me with the results of the next scan by 19th April (my appt. to discuss the results is officially on 26th April). She also prescribed me gabapentin for peripheral neuropathy and has slightly reduced my nab Paclitaxel dose for next time. I have also decided to do a Foundation 1 cancer test, sadly not yet available on the NHS to see if my tumour mutation/marker profile can pinpoint any other treatments that could potentially work and rule out the ones that wouldn’t. My onc can do that (as she also does private works at one of the local Spire hospitals) and it costs just over £3000. I will leave no stone unturned and I realise I am in the lucky position to be able to pay for it. Anything to have more time with DS. Anything.

Onc also told me that my liver enzymes have improved, so overall the chat I had with her was very useful and it settled me down somewhat. She is very formidable but excellent, a top notch breast cancer medic leader with fingers in lots of pies. Which can be very useful. And she said that basically I’ll be on nab Paclitaxel for as long as it appears to be working.

I shaved my head a few days ago as it was shedding like mad. Wig on, Eadie Chops headgear on. Fuck the hair, if the treatment is working, I would happily relinquish my hair forever.

This weekend is the weekend from hell as my side effects start on day 5. Heartburn, fatigue and peripheral neuropathy. I will be guzzling Omeprazole & Gabapentin a plenty.

@loopyloolou Welcome, and sorry that you find yourself here. Your story is very similar to mine - similar diagnosis with similar timings, but my mets are in my spine. Also on Letrozole and Ribociclib, plus Denosumab to strengthen the bones and the biggest calcium/vit D tablet you've ever seen.

Did you get a revised prognosis? That's going to be my first question to my new oncologist when I meet him in a few weeks time - my last one was hopelessly non committal. I know they can only give percentages / rough estimates, but I need to know whether to start the ill health retirement process now or wait a bit.

"...have set nice things in place for after I'm gone."

What kinds of things @WrenNatsworthy, if you don't mind me asking? After my latest appointment I feel I need to step up "put my affairs in order" but am feeling rather overwhelmed.

@SewingBees I didn't get a new diagnosis but he said the original prognosis was based on outdated figures, and not for a fit woman in her 40's , and the first oncologist put me straight on fulvestrant which my new oncologist said would be a fourth line treatment not first line,so by changing to my current treatment it gives me several extra lines of treatment when /if this first line treatment stops working in the future! I've just had my third lot of scan results since diagnosis and my tumours have shrunk again, so feeling a lot more hopeful, thanks for welcoming me x

@loopyloolou It doesn't give a lot of confidence when the specialists disagree on the best line of treatment does it? I'm hoping I get on better with my new oncologist. I had to request a change because my previous one was awful - what she prescribed was right for my situation but she was like a machine going through the motions, no humanity at all.

I keep thinking of things I need to do but not actually doing them

The will is sorted, my vicar has a rough idea of my funeral, my friend will sort clothes etc

It's more, here DH, cancel my dental plan, this is the bank passwords etc

Tho just posted on other thread that have given him a mouthful cos he's not shut up twittering for days. I just want some quiet and he's full of pointless commentary even when he can see I'm in pain and / or concentrating. He's driving me mad

How do I go about getting a second opinion please?
As lovely as my Oncologist is I don't have much confidence in him.
He's not based in my hospital and only comes one morning per week.
The only other Oncologist that specialises in my cancer also only comes one morning per week and I've heard he's not much better.

I wouldn't even know where to start or who is the best to go to.

Your GP shld be able to re refer you for a second opinion

But read this thru

www.cancerresearchuk.org/about-cancer/treatment/access-to-treatment/different-doctor-second-opinion