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.)

I'm not doing the bird watch.

The consultant said my blood results show the iron tablets are working, but that I could have a week off them to see if it helped the diarrhoea. I last took one about last Wednesday (I had already skipped a day when I saw the doctor) and it doesn't seem to have helped. I was bad Sunday although better yesterday. OK so far today, but it's too early to tell.

I'm trying to find some probiotics which I'm sure are in the house somewhere. They weren't where I thought they would be. Everything is in such a mess. I'm messy at the best of times but there's usually a kind of order in the chaos, but DH doesn't understand my system, so as he's been doing everything for months, anything could be anywhere.

I know you live rurally but if Amazon deliver to you, they do sell probiotics. Aware that won’t help the frustrations about your systems - bodily and domestic - being so completely out of kilter. Fingers crossed things are marginally better today for you.

I don't want to buy more when I know that I already have some. They may be out of date but I would at least like to know which ones they are, because I would like to reorder the same ones.

When I've looked at Amazon recently (not Haul, the main part) it all seems like Temu-type tat and I would be worried about getting fake or useless stuff.

Just a suggestion, but maybe ask your doctor or oncologist if it’s possible to stop iron tablets because of potential gastro side effects and go for a 6-8 monthly iron infusion instead? I’ve basically done this for the last 4 years. My GP has called me a few times when my iron level is too low from a blood test result, and just told me to pop into my local A&E for the ‘Ferinject’ infusion (it takes a couple of hours, plus waiting time). My serum ferritin level usually drops to somewhere near 4-7/8, and then maybe I pop in A&E early on a morning when they’re likely to be quiet. They haven’t got to the bottom of why my iron is low, but I’ve had MRI/CT and U/S scans and gastro and colonoscopy cameras, gynae consultant appts etc, and they have just decided maybe I’m malabsorbing food in some way, and left it at that for now? Anyway, just a suggestion re the potential iron tablet side effects.

Hopefully you’ve found them but if not you can find branded ones on Amazon like Holland and Barrett etc. or if you bought from amaxin before you can search your previous orders.

My appointment today was with a haematology consultant to explain the CAR-T cell therapy in more detail and take blood (6 vials!). I have tonight to think about it, then tomorrow morning I see the CAR-T specialist and sign the consent forms if I want to go ahead.

I'm not liking the odds at all. About 40-45% of patients end up in remission, so that means 55-60% don't. Approx 1 in 5 (20%) of patients end up in Intensive Care and obviously some of those (around half) die. More than the 5-6% I had read about. Some people end up with serious lifelong conditions (e.g. kidney failure) and, even if the treatment goes well, I would have months of no / low immunity to infection - previous patients have died of Covid (not during the early years of the pandemic but more recently when almost no one dies of Covid.)

I don't know what to decide. Is it worth chancing a 10% mortality rate for a 40% success rate but a high chance of ongoing long-term health problems?

I suppose you need to balance it with mortality rate if you don’t do the treatment

Ohjoyohbliss, what’s the alternative to the new therapy (to remind us)? If anything? Also, how old are you (if you don’t mind me asking?)?

@Ohjoyohbliss well they've plonked you between a rock and a hard place there haven't they. It doesn't sound like there's an obvious "right" decision. Huge hugs.

Goodness, what a tough decision and in such little time. I guess it depends on what your other options and odds are.

Sounds so tough. Can't really know what the 'right' choice is. There were people I looked after over the years that did say they wished someone( medical) could make the decision for them.

The only right desision is what's right for you.

This seems like no time at all between being given the odds and signing. I wonder what that logic is? Could you ask for more time as this is new information?

Again it's crap because time is also a luxury that doesn't exist with cancer.

You need a pro and con list. How ready are you to be in isolation? What happens if you decide not to go ahead? How sick will you feel and are you ready to be that sick for that long? How did you feel when offered chemo and why and do you still that way? Etc Etc Etc. But 24 hours to do that? I don't think that is fair. But there's no fair here either.

Lots of questions to list as well. Could you so no now but change your mind later? Do another chemo instead? Could you start but then decide to stop ( I'm guessing no - but at what point is there no room to change your mind).

I'd seriously ask if you can have the weekend to digest it.

It is so unfair.

It might be worth think of the odds it will be OK. Your odds of it working, of getting kidney complications etc. Some of these odds are very much in your favour. 10% is high, but 90% is still higher. But if 10% is too big a risk then that's is very valid too

Thinking of you while you tussle with this dilemma. And in such a short space of time to think.

Someone once said to me when I was faced with a barrage of statistics on which to make a medical decision: "Would you put money on a horse that had a 10% chance of winning?" It sounded trite, but it did help.

I'm going to sign the consent forms tomorrow and get things started. Then it will be a couple of weeks before the T cell collection, so my thinking is that I can always withdraw my consent before that.

To take my mind off it, I went to the pub quiz tonight, for the first time since July. We only flipping won! I think my best answer was King Zog of Albania.

That sounds like a very sensible plan Joy.

I went to my first pub quiz for the first time in years last week. Unfortunately it confirmed my fears that I am, indeed a bit of idiot😅

I know ew the Eurovision answer much to my shame, but still got the answer slightly wrong

It is amazing the obscure stuff we know.Tucked away just ready to emerge at the right time😀

Thst does sound like a decent plan Joy.

Hi Joy, I don’t know you but I wanted to send you my best wishes.

im sorry you’re going through this but it does sound like you have a good team around you. and it seems a sensible decision to sign the consent forms now and then you still have a window of time where you could change your mind if you wanted to.

I hope that you continue to feel better and that the next treatment- if you decide to try it- works beautifully for you. You’re in a horrible situation and in I’m so sorry. I’m sending you prayers and I’ll keep you in my thoughts.

Gosh @Ohjoyohbliss that CAR-T stuff sounds very daunting. Are there any other options? Think you are right to consent now and absolutely withdraw consent if you feel you want to. Your decision not others’.

Sounds like you’ve made the absolute best decision for now, especially under those circumstances. Keep going as they recommend but don’t be afraid to call pause when you need to.

Well done on the quiz, I didn’t know Albania had a King, certainly not his name, although it does sound a bit like a character from Flash Gordon or a Pixar movie, so now I don’t know if he’s real and am off to Google.

All the best, we’re here with you x

Good decision.

Sounds like a sensible decision. And winning the quiz feels like a good omen too. Good luck this morning x

There is a trial of another possible treatment ongoing but, because it's a trial, they don't know how effective it could be. I wrote down the name but I can't remember it. It's not a chemo, it's one of the more modern treatments. I need to look it up. So if I decline the CAR-T, that's what I would do. Also it's what they will probably use if I survive the CAR-T but don't go into remission.

I'm going to sign up for the trial anyway, because if the cancer grows / spreads before the CAR-T, I can't have chemo so it's radiotherapy and/or this trial.

Morning Joy. So much for you to have to think about and decide. For what it's worth I think signing up for the trial also seems good idea. Like you said you can see how you feel and how things go and can always change your mind if you want to. Hope today not too hideous.