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.)

My question would be, can I change my mind? Ie if you sign up for it, then felt bloody awful for the 10 days after the CAR-T and wanted to back out at day 9, can you? But presumably they wouldn’t go ahead if that was the case anyway? Massive decision to make Joy x

I presume if I had bad CRS or ICANS, (the main scary side effects of CAR-T,) they wouldn't give the Aleta on day 10 but would wait a few more days (up to day 18.) It's something I will have to ask.

I really feel for you in this awful state of indecision.

I have been in a similar situation recently and am just in recovery from the fundamental and irrevocable heart procedure I opted for after months of weighing it all up and I have mixed feelings about the result so far - although it is very early days I know.

That feeling of "do I? - don't I?" is agony when there is so much at stake. And, while we may be intelligent and educated, the information can feel very intimidating when not in possession of the background detailed specialist medical knowledge that the consultants are working from. And I found that trying to research it all felt counterproductive in the end as you just find a heap of conflicting opinions which turns your brain to porridge.

In the end I felt that I just had to trust my medical advisors and go with that flow; I too was part of a study.

I cannot help you in your decision making but can send some fellow-feeling. Sending a hand hold ......

Really hard. I would read the info with a note book and pen and makes notes for questions. Decide what you want and don't want and know you can stop at any time.

Unfortunately one thing is there's no certainty what every you choose. Everything is a bit of risk but what's the alternatives?

So tough for you Joy.

I would write down all the questions you have in advance so you won't forget anything. I would also try to think about everyone you know who work in this field, either as a researcher or medical staff to see what opinions they have. Even if they are people related to friends etc, I am sure they will be delighted to respond your questions. Thinking of you xx

Nobody I know IRL has even heard of CAR-T, let alone the Aleta trial. Even in the CAR-T FB groups I'm on, nobody knows about it.

One thing I would want tounderstand is to what extent "finding out the safe dose" is a necessary step to tick a box, where they are already fairly confident in the answer based on its use to date and just need to formalise that. vs. a step into the unknown with significant unknown potential risks.

Also what are the ranges being given? Has the upper one been safely given to other before and this is just a case of seeing if lower is as effective, or are they significantly increasing it?

Hi OP,
I work in this field and am familiar with Aleta's biotherapeutics and the molecule in the Aleta trial.
Has anyone explained to you how it works and how it boosts the CAR-T therapy? And why it might help treatment of your lymphoma?

Ooh, thank you for commenting.

I have a bunch of reading materials to go through, which I haven't looked at yet. From my skim reading on t'interwebs last week, I gather it helps the modified T cells to find the cancerous B cells. (I might be wrong and I will read the info.)

Yes it does do that 😀

Please shout if you'd like any other info (about how it works, not about dosing etc. I'm not a clinician!) and good luck with your decisions.

I've had a look through the paperwork and I had misunderstood - I thought the Aleta was a one hit wonder, but it's given every two weeks for 12 infusions. That means I would have to go to Leeds at least once a fortnight in addition to the CAR-T check-ups. I'm not allowed to drive for months after CAR-T so that would be a right pain. Transport costs can be reimbursed by the trial but they only mention petrol costs and public transport, which would be two buses and a train each way - I'm not doing that, especially as I'll be hugely immunocompromised.

Also I believe that, after the first month or so, most of my CAR-T follow ups will be done locally so I won't have to go to Leeds all the time.

Maybe they'd pay for a taxi?

I think it would say so if they would, but I'll add it to my list of questions.

Apropos of absolutely nothing, DH has had a few bets on Cheltenham and won nothing. I just said "I like the look of that one" and he put £1 each way on it. Won fifteen pounds and change!

Go buy a scratch card or lottery ticket with some of the winnings Joy! Hehe ;)

Re the trial, I'm pretty sure you can back out at any point from medical trials, so if it became unmanageable, I think you could even stop part way through (though obviously they would always prefer that that isn't the case).

My last pub quiz for (at least) months tonight. We won by a country mile! Going out on a high. There were 10 or 11 teams in total.

It's great to hear Joy! Quizzes are a lot of fun, congrats! Have a lovely weekend xx

Oh well done!!

Fantastic!

Awesome x well done! Something to look forward to returning to when you are able ❤️

This afternoon I'm going for my PICC line fitting. I'm a bit apprehensive but it's got to be better than multiple attempts to find a vein every time they need to take blood and give me IV treatments.

All the best with the fitting. I had a picc for 16 weeks and it was so much better than constant pokes for blood tests and chemo. It settled down after a couple of days and I was not too aware of it. I found hugging a pillow helped for sleep comfort.

showering was fine, I wrapped my arm in clingfilm. I also had the odd bath and kept the picc arm above the water, leaning it on the side.

Hope you’re not to uncomfortable with it, and as you say, is a better option in the long run x sending strength and healing thoughts this afternoon.