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.)

@NotPerfectlyAdverage
It was always suspected to be CRS (cytokine release syndrome) from the CAR-T therapy but they have to treat me for infection until they know for sure, because even a mild infection can kill me while I have no immune system¹. Annoyingly it's taking days and days to get sample culture results back. It was supposed to be 48 hrs but, as at last night, no results. So I'm still on broad spectrum IV antibiotics every 12 hours. Hopefully this evening will be the last one.

¹ I listened to a history programme recently and it was the usual story of white men's diseases killing off a huge amount of the natives, because they had no immunity to them. A penny dropped - that's me now. EVERYTHING has gone. Not like during my chemotherapy when I was immuno-suppressed but that baseline was still there, just reduced. Now it has been totally obliterated, immunity conferred through my mother's milk, childhood illnesses, vaccinations, everything.

They never did get that blood sample. Two nurses tried and failed. They said they would ask a doctor to do it. I said doctors are usually worse, better to get a phlebotomist. Nobody came and I certainly wasn't going to remind them.

Obs good - great news. Just need to catch up on stamina from days in bed.

We get those miserable drug commercials here. They really don’t do the SEs justice.

I'm not sure what this means, if I'm honest. The only drug commercials here are for over-the-counter things like cold & flu treatments, indigestion remedies and the like.

The adverts I'm seeing all the time are for cancer charities and funeral plans.

So glad you’re on the up Joy. Yes, please be careful while you’re so wobbly, it’s not worth the risk. Keep an eye on dripping noses med students etc and don’t let them near you -you’re right, more vulnerable than a new born baby now x

Very good news on the 6am obs. I hope you start getting your strength back. One step at a time. They could skip those commercials for God's sake.
Try to think in a future where everything is normal, annoyed with traffic, the rain? The office politics and all the non important stuff. It will come. ❤

@Gymnopediegivesmethewillies
Everyone coming into the room has to wear a mask and there's a special air filtration system supposed to minimise any bugs in the air.

Visitors have to wash hands at the entry to the ward and wear a mask.

Glad to hear your obs have improved I’ve been thinking about you. Hoping you’re on the other side of this now xx

Also glad to hear re obs and mask wearing. That history prog sounds interesting but also I think I would find it surreal realising 'this is me'....at the moment! Hope you continue on upward trajectory...and DO NOT FALL.

@Ohjoyohbliss I live in theUS. The commercials are from big Pharma. for new drugs used to treat psoriasis, cancer and other major illnesses. I think NZ gets them too.

How are you feeling now Joy? Have you managed to eat anything today?

Eating much better, thanks. One slice of toast for breakfast; couldn't manage two. A yogurt and a banana mid-morning. Apple juice, ham sandwich and clementine segments in juice for lunch.

Now having one of the Fortisips I've been asked to try. Peach-Mango flavour. It's ok but I don't love it.

We don't get those here (UK). Thank goodness, because there are always well-meaning people who watch a documentary about a cancer patient's dramatic recovery 🙄 and "you should try that" and you grit your teeth and say, "different cancer, that treatment wouldn't be appropriate for mine" and yet they still keep banging on about it every time you see them. I imagine that would be even worse with cancer drug adverts.

There are two major risky side-effects of CAR-T: CRS, mainly physical and ICANS, mainly neurological. I think I've come through the CRS now but I'm just entering the danger period for the ICANS. My particular CAR-T has lower ICANS risks for most people so I'm hoping to get away with it.

DH knew his immunity had started to improve after CAR T Cell when they stopped wearing masks, I think around day 7. He had bouts of extreme tiredness, not helped by being woken up by the helicopter landing on the roof of haematology.
I don't know if it helps, but at 6 months he was told the risk of recurrence of DLBCL was 5%. He is now at 9 months post treatment and still absolutely fine.

Well hopefully you’re through the worst Joy and tomorrow you can manage a bit more. Constantly in our thoughts, and sending all the strength and love that’s possible over the ether!

Keep us updated 👍🏻❤️

@Ohjoyohblisshow’s your temperature and have you managed to eat a little more today? Are you hooked up to anything still? Thinking of you, and thank you for taking the time to type the advice on my thread - I’ve acted on it xx

@HilaryThorpe
DH knew his immunity had started to improve after CAR T Cell when they stopped wearing masks, I think around day 7.

That seems extremely early. I'm T+8 and asked the doctor today about my neutrophils and he said they have increased from last week's flat out zero to a zero point something; it might have been 0.3. Anything under 1.5 is neutropaenia.

I'm quite encouraged that it has increased at all in the first week. It gives me hope that my immune system can recover. A lot of people suffer very low neutrophils for months or even years after CAR-T.

It's extremely windy here today. Not outside; inside me.

I've only had two episodes of diarrhoea so far today (an improvement) but I've had to dash to the loo many, many times because, putting it crudely, I can't trust a fart. The gurgling noises are quite something, too.

Other than that, my obs are all good today so I don't need any IV antibiotics tonight, yay! No more frothy wee.

There was a slightly weird thing today: included in my regular morning cocktail of pills is an antifungal, Posaconazole. This morning it wasn't in the medication collection. The nurse said I needed a blood test to check the levels before having it and she would be back soon to do it. That was about 9 am.

Around 3 pm, another nurse came and took the blood but brought the pills at the same time, and said I should take them. I did.

Around 6.30 pm, another nurse brought my evening medication and another dose of Posaconazole. I said I'd already had them, and she seemed very surprised.

Things have seemed better organised here than some of the times at Pinderfields, but there do seem to have been a few left hand not knowing what the right hand is doing moments recently.

Good you’re not on an IV overnight and things slowly seem to moving in the right direction …

Annoying you still have to keep mentally aware of what’s what, when you shouldn’t have to (if that makes sense), but hoping you get a peaceful night and a positive day tomorrow. Thank you for the support on my thread, when you’re dealing with so much yourself right now xxx

It's good you are on the ball! - well done!

The doctors were very pleased with how quickly his immune system recovered. He had already been in full remission for six months by the time he had the CAR T cell. The RCHOP first line of treatment had got rid of everything in his body, then the two lots of refractory lymphoma had been in his head, near the original site in the sinus. They were treated as a second line of treatment by Proton therapy. I don't know if the remission made any difference to his level of reaction to the treatment and speed of recovery.
We had daily phone calls from the nurse co-ordinator for a month and he did not go out in that time. We both stayed masked for several months afterwards. He had all his vaccinations in the third and fourth month.

Beaufort scale update:
Decreased from Gale Force 8 to Light Breeze level 2.

lol … good news!! Let’s hope it keep an heading in that direction! Woop!