It wasn't ovarian, it was lymphoma

[Ohjoyohbliss]

My original thread is nearly full, hence starting this one.

I knew I probably had cancer in late July 2025 but it took until the end of August to get a definitive diagnosis: Diffuse Large B-cell Lymphoma, Stage 4.

I have had six rounds of chemo, the last of which was on 12 December. Had a lot of nausea and vomiting, plus an infection which left me hospitalised on oxygen and IV antibiotics for a while. I am extremely weak now, and waiting to find out whether the cancer is still active. (A scan at the half way point showed it was.)

Obviously things will be very different in 2026 and go one of two ways, depending on the scan result, which I will find out on Friday 16th January.

Previous thread:
https://www.mumsnet.com/talk/cancer/5382361-likely-ovarian-terrified-anyone-available-for-a-hand-hold

(Not sure why that takes you to the middle of the thread; sorry.)

Sending love and strength for today x

Wishing you all the very best today. Keep positive.💫💖

Wishing you the best news for today ❤️

Hey OP. Sending you all the good vibes. Scanxiety is extremely real!
I know with DLBCL the treatments have come on in leaps and bounds, CAR-T as a second line, if it’s needed and if you can get it can be a miracle treatment.
but of course, hoping it’s not needed. 🙏🏼

Hope you get good news today 🤞🏻

I just wanted to wish you well for today. I hope you get good news.

Wishing you all the best OP x

I’m rooting for you @Ohjoyohbliss🤞🤞🤞🤞🤞

Best wishes for today.. x

Hoping for the best outcome for you @Ohjoyohbliss

I asked today about probiotics and the doc ok'd it so I might start.

How did the appointment go?

You've hit the nail on the head. CAR-T it is.

@Ohjoyohbliss are you moving onto second line treatment? Hope you are okay.

Hi Joy, I was just wondering how you are, then searched and saw the thread was full. I will chatch up but I have been thinking about you

Well, it was a Curate's egg of a meeting. On the plus side, my blood results were good, and almost all of the lymphomas have completely gone.

The part that I didn't want to hear is that one tumour is still there and has actually grown since the previous scan. It's near the liver (porta hepatis.) Obviously it's resistant to the chemo that I've already had, so the first thing to do is a biopsy, to check the composition of the tumour, as it could be another type of cancer.

After that, the next treatment is likely to be CAR-T cell therapy. This involves harvesting some of my own T cells (a type of white blood cell), then modifying them in a lab to turn them into killers, then infuse them back into me, where they will destroy the rogue B cells.

It's not risk-free: the procedure has a mortality rate of over 5% . That's not patients dying of the cancer because it's unsuccessful, (which is a higher number,) it's patients who are killed directly by the procedure itself. You have to stay in hospital for at least two weeks after the infusion.

The consultant had already referred me for the biopsy and wanted my consent to refer for the CAR-T. He said there will be a long consultation with the team in Leeds and lots of tests etc before they will agree to go ahead, so I might as well start the process, then I can decide to go ahead or not nearer the time. It's likely to be at least two months before it can be arranged. It has to be approved by a national panel, apart from anything else.

I'm sorry that it hasn't completely shifted. I've heard so many positive stories about CAR-T with lymphoma and I hope it can do the trick for you too. xx

Bleugh...so much good news in there but a stinker of a dollop of bad to really take the shine off it for you. X

Yes. Second line treatment.

Sorry it wasn't completely good news. I don't know anything about CAR-T except in theroy ( scientist). Will you be able to build up while waiting to start the treatment? So I'm very ignorant. Presume you don't need your immunity wiped like like a stem cell transplant?

It is good news overall. You have really good options. Still it sucks that it didn't wipe everything out. Thinking of another long hospital stay must suck. At least it will be spring soon. Some sunny days and getting some fresh air without being soaked and muddy.

Also it's good the app came round fast. I was worried you'd been lost in a pile on someone's desk for a moment.

There are some great CAR-T support groups on Facebook, full of people with plenty of experience, success stories and support (CAR-T cell patients and caregivers is one of them). If you fancy it. Hugs

How do I feel? Absolutely gutted. My life has been on hold since last July. In and out of hospital August and September, then from October onwards, my only socialising has been an afternoon visit to the pub across the road every third week of the chemo cycle when I felt up to it or, on one occasion, to a friend's house. I asked if I can drive yet, and he said no, so I'm still very limited as to what I can do and where I can go. (DH doesn't drive and we live rurally.) This is where family could come in useful.

I've felt let down by my family; admittedly we've not been the closest, but I would like to think I would have stepped up if this had happened to one of them. It has upset me and made me wonder if I should change my will. DH's family on the other hand, especially his mum, have been great. Yes, a lovely MIL story on Mumsnet!

The chemo has been brutal. Thinking that it had good prospects for a cure has kept me going. But I'm not cured, and what I know about the next treatment is absolutely terrifying me.

Pretty much all of my bucket list involves foreign travel. I had to cancel five trips last year* and was clinging on to hope that I would be able to travel again this year. I had already booked two very expensive holidays for this summer before I got ill. I didn't cancel because I hoped to be well enough to go by then. I'm likely to lose a fortune.

Right now I'm finding it hard to be positive, but equally I know that I need to make the most of the next few weeks while I'm recovering from the chemo and before the next treatment hits. I just hope that this bastard [autocorrect really didn't want to type that. It's obviously not a word I use much] tumour doesn't cause me too many problems in the meantime.

*The year was heavily skewed with relatively little in the first half and one a month from August: two big holidays and three short European city breaks.

Thank goodness for the overall good news, but what a bastard (I only typed that to see if the spellchecker would let it through for me - it has! - they are obviously resigned to my bad language!) that there is still a problem that needs to be tackled.
You have been through so much and will have been hoping for a respite from more treatments, but do hang on to the fact that the treatments you have had have done good things - not as much as you might have wished, not the whole story, but nevertheless effective.
It does sound as though your team are well-qualified to make sure you get the best treatments on offer which is a positive, even though you would much rather simply not have to have these treatments in your life.
Sending a hand hold ........

It is likely that I would have lymphodepletion chemotherapy just before the modified T cells are infused back. This can cause hair loss and other chemo side effects.

This is a good introduction to CAR-T cell therapy:

CAR T-cell therapy | Cancer Research UK https://share.google/MvHMyedA6w97fs8iu