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 had another IV antibiotic this morning and my obs were all good afterwards. However, my temperature spiked again this afternoon and paracetamol didn't bring it down. So, guess what? More IV antibiotics.

The doctor thinks that the temperature is just a normal reaction to the CAR-T therapy; it's expected in most cases. However, they can't take any chances because if I do have (even a minor) infection, it could get very serious very quickly, given that my immune system was wiped out by last week's lymphodepletion chemo.

Temp still high after the antibiotic so now I'm on IV paracetamol instead of tablets.

I had a couple of diarrhoea bouts this afternoon. Told the nurse and she brought me a bed pan for a sample but of course it hasn't happened since.

Good to hear from you Joy with an update, and it seems that they are ‘on it’, at least, with reacting quickly.

Hopefully you’ll be able to at least doze if not fully sleep with the IV in fingers crossed.

Have you got any idea yet what day you might be home, or is that still a way off?

Sending temperature lowering vibes your way (but not too low! ;)). Much love.

@Ohjoyohbliss After my first (and only) dose of immunotherapy I had a reaction that landed me in the hospital for two weeks (forgive me if I’ve already told this story). I had continuous IVs to replace my potassium, wore a holster monitor and had to drag myself to commode or the br due to continuous diarrhea and vomiting. I feel your pain. No bath or shower, my head/hair itched something fierce. The only “bath” I had was from a student nurse (sponges) (the shower cap hairwash was heavenly). The nurses were tired of me after a week. I was so embarrassed to be there although I couldn’t do anything about it (potassium too low). I’m thinking about you Joy. Praying for the best most wonderful outcome after all this.

It is so daunting to have such a barrage of tests and treatments, but there is reassurance in the fact that they are being very thorough and taking no chances ... although it must all be so tedious. But these are steps along the right road. Stay strong.

The IV last night was quite short although it took ages for the nurse to disconnect me.

Slept reasonably well until 6am (5am yesterday's time) mainly because I hadn't drunk gallons of water, so maybe I'm a bit dehydrated.

The consultant I saw a few days ago was suggesting that I could probably go home this coming week, but depends on how I get on, and I might have to stay longer for the Aleta trial. Junior doctors' strike next week probably won't help and might be a factor in getting me out sooner.

I'm still running hot today and have had some oral paracetamol.

@Sbmpp that sounds horrendous. I had a lot of sickness on Pola-R-CHP, which is a combination chemo and immunotherapy, although they finally got it under control (mostly) with Akynzeo. I had that for my depletion chemo last week and have had no sickness, thankfully.

Sending you a gentle hug. x

Overall everything is going very well Joy! Hope that temperature will be under control soon. xx

Today they are threatening me with more blood cultures. I said they need to get the best person to do the one not through my PICC line. The nurse looked at my arm and said it looks ok. So we'll see.

I've got my revenge by giving them a poo sample to deal with. So embarrassing!

@Ohjoyohbliss You have been through the wringer for sure 😢. We get those miserable drug commercials here. They really don’t do the SEs justice. I’m hoping things are looking up.

I'm quite poorly, temp has been as high as 39.3. I feel wobbly and my eyes are red and puffy.

What’s the plan? More IV paracetamol etc?

Oh Joy. I am sorry. How crap for you.

Hoping they will be speedy in getting on top of this.

Sending positive healing vibes your way Joy x

Oh Joy, a raging temp will really make you feel appalling. I hope they come up with a solution asap and you feel better soon. Thinking of you x

Yeah, not doing so well, high temperatures since Friday and still not under control although today I've been put on Tocilizumab and steroids to hopefully dampen down my reaction but it's taking a while to work.

No appetite. Diarrhoea.

I wish I had words of wisdom but sending hugs of love instead.

Sorry you are having this bad patch. I am hoping things will settle speedily.

I hope things take a better turn soon. Do they suspect a infection or side effects?

You are really being battered aren’t you? I’m so sorry. I hope the meds kick in overnight and you start to feel better. Do they think it’s a reaction to your medication or are they worried it’s an infection?

I'm very sorry to hear about the temperature Joy. I'm keeping you in my thoughts. Hoping everything will start improving soon xx

You are taking a real battering aren't you. I hope you are making plans for treats when you feel up to them. Whether that be a good book, a trip, something delicious to eat or drink, new bedding and pjs, or a good soak in a waterfall - whatever lights your fire. Short term, may your spike have peaked and your obs improve.

Oh Joy, thinking of you and hope they managed to get to get your temp under control soon and you start turning a corner. Thinking of you and sending positive thoughts 💚xx

All my 6am obs were good. I feel like a new woman, albeit weak. I'm having to be escorted to the bathroom because I'm so wobbly on my feet. The last thing I need is to fall and break something and have to go to A&E with all the sick people and no immune system.

After four days virtually bed bound and eating nothing for the last two, it's not really surprising I'm weak. Hopefully my strength will come back quickly.