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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

In a&e just told I have a brain tumour

930 replies

Wells37 · 26/09/2024 20:41

Just that really. It's 2cm ish on ct scan symptoms for 5 weeks. I can't stop crying. I just sent dh home as kids are at home.
Terrified

OP posts:
Wells37 · 09/10/2025 15:13

Thanks for all the good wishes everyone.
@boredwithfoodprobno they never found anything on my skin. I had a couple of moles removed but they came back as non cancerous. Apparently it’s quite common with melanoma to not find a primary, something could have pop up then disappeared. I just had a small area in the tissue on top of my leg , it only showed up on a pet scan.

MRI head has been clear since my operation, first scan on other area showed it had shrunk by over half, 2nd they couldnt measure it, 3rd and 4th completely clear.

I’ve had brain surgery, stereotactic radiotherapy to my brain. Then 3 lots of ipi/nivo immunotherapy and 1 single dose of nivo. Plus a cancer vaccine trial.

I exercised as and when I could even if it’s just a walk around the block. Cut out most processed foods and eat a lot lower carb than I use to and eat loads of veggies and as much variety as possible.

If anyone is reading this and going to have cancer treatment soon. There’s lots of research about people who have good vit d levels and get 30g fibre a day. I think the fibre is especially relevant to immunotherapy, maybe chemo too but I’ve mainly researched immunotherapy response. Get your vitamin d levels up.

OP posts:
supersop60 · 09/10/2025 19:20

So glad to hear this, OP.
Onwards and upwards!

EachandEveryone · 09/10/2025 20:22

I’m not trying to derail but I have only had one lot of immunotherapy and the colitis has been horrific did you ever have loads of steroids? I just want them tapering so I can get back on it. I honestly thought chemo was supposed to be worse but if it can go wrong it has on immuno and now I’m on a break from it and when it comes back I will just have the single one not both.

Wells37 · 10/10/2025 07:24

EachandEveryone · 09/10/2025 20:22

I’m not trying to derail but I have only had one lot of immunotherapy and the colitis has been horrific did you ever have loads of steroids? I just want them tapering so I can get back on it. I honestly thought chemo was supposed to be worse but if it can go wrong it has on immuno and now I’m on a break from it and when it comes back I will just have the single one not both.

I got very bad colitis after 3 lots of ipi /nivo. I ended up in hospital twice on iv steroids & iv anti seizure meds. I had an infusion called inflexinab, as I didn’t respond aswell to the steroids as they wanted . The inflexinab worked really well, I had 2 infusions as an in patient and 1 as an outpatient.
It took me about 10 weeks to get off the steroids but I was on 80mg. I’m back on them now but for another side effect, rheumatoid arthritis 🙄 I’m on a smaller dose now though, I’ve started on a medication for my joints recently so once that kicks in hopefully I get off the steroids again.
The side effects are brutal but if it’s any consolation @EachandEveryone apparently the colitis is a good sign the immunotherapy will be having a good effect on the cancer too.
All the best for your treatment.
If you want to chat feel free to message me.

OP posts:
Mittens67 · 10/10/2025 08:04

EachandEveryone · 09/10/2025 20:22

I’m not trying to derail but I have only had one lot of immunotherapy and the colitis has been horrific did you ever have loads of steroids? I just want them tapering so I can get back on it. I honestly thought chemo was supposed to be worse but if it can go wrong it has on immuno and now I’m on a break from it and when it comes back I will just have the single one not both.

It’s a very common misconception that immunotherapy is easier than chemotherapy.
It isn’t easier, it just has different side effects.
Because we don’t lose our hair and extreme vomiting is rare it is assumed it’s a walk in the park.
The number of people who told me I didn’t look like I had cancer!

I had nivolumab which gave me colitis after 3 or so infusions. Horribly painful and debilitating as I am sure you know.
Was hospitalised for a week, on a drip for severe dehydration and given high dose steroids and painkillers.
As the OP says, my doctors told me that in some ways colitis is a good sign as it shows the immunotherapy is really working on changing your immune system.

It sounds like your body is changing too so that is a big positive even though colitis is (literally!) shitty.

Then it took a month at home to wean off the steroids and restarted nivo.
Another six months of nivo and the colitis was back and I needed another week in hospital on a drip and steroids.

This time the oncologists said no more nivo because anymore was likely to finish my intestines off.

Luckily for me the time I managed to stay on nivo had stopped my melanoma.
My original site (arm) and the spread to my lungs had disappeared after the first few infusions.
The ones on my arm started actually dissolving in front of my eyes after the very first treatment.

Nivo alone is supposedly milder than a combination treatment like ipi/nivo so I was even luckier that my immune system reacted so well and kicked in to kill the cancer.

I am now almost five years in remission.

I actually had a check up yesterday with my lovely consultant who was telling me about the vaccine treatments which are making such huge improvements for melanoma treatment and it is hoped these will soon replace immunotherapy altogether.

She said that in the past ten or so years she has seen a complete turnaround from basically having nothing to offer patients with advanced melanoma to now the majority of patients ending up in complete remission.

Sending you all good wishes.

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