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.)

Is it glofitimab by any chance? I'm part of a Lymphoma facebook group which is mostly American and a few have reached remission with glofitimab after front line treatment has failed.

The signs from America are definitely promising, though hopefully it won't be needed in your case.

It's the PORTAL trial and it does include Glofitamab but also Polotusimab, which I already had as part of my Pola-R-CHP first line treatment. I've seen that they are recruiting fewer than 100 patients so I guess I should sign up ASAP.

Hi. I came across your thread yesterday having also seen your earlier thread. I used to work in research on CAR T cells for lymphoma before they were licensed so feel free to message me if you have any questions. I've changed usernames for this post.

OP, I work in the CAR-T / immunotherapy space (I made one a few years ago which is heading into the clinic, but it's not the same one as it was for a subset of lung cancers). CAR-T can seem like a very scary proposition, and your numbers sound right on the risks, but for some patients CAR-T is a game changer.

One thing I would say, is that it's very common to get flu-like symptoms and/or inflammation after the first dose, but - as horrible as that is - it can also be a sign that it's working.

Wishing you all the very best xxx

Saw the CAR-T specialist consultant today. She was much more optimistic and said the figures I was given yesterday are for the department across the board, but that I am just (borderline) eligible for Liso-cel (Breyanzi) which has a lower risk of severe side effects and is likely to be at least as effective as the older treatment, maybe more but it's not been in use long enough to have definitive data yet. It was only approved for use in England 11 months ago.

I said to DH afterwards that she would have a positive sales pitch, because she'd be out of a job if no one had it.

He countered with they're going to a lot of trouble and expense, including a hotel room or apartment in Leeds following discharge, because I live too far from the hospital to be closely monitored, and they wouldn't bother if they didn't think it would be worth it. He may have a point.

Both doctors (yesterday and today) said they are confident from the scans that my remaining tumour is going to be DLBCL the same as the original, but the biopsy is necessary because CAR-T has to be approved by a national panel and they will want confirmation. The panel is on Tuesday, the same day as my biopsy, so they hope (expect) it to be "approved pending biopsy results" which will be available about a week later.

Also today, I was assessed for whether my veins are good enough for the T cell harvesting. Result: no, so I will have to have a central line put in my neck or groin. That will only be for the duration of the procedure which is typically 3-5 hours. Then they will put a PICC line in my arm before the CAR-T cell infusion so I can be treated quickly for any reactions. It's all scary stuff.

No mention of the PORTAL trial today and no chance to sign up for it. I asked, and she said that they will discuss me at MDT on Tuesday [everything is on Tuesday!] and decide whether radiotherapy or the trial is the best bridging treatment.

Your DH is right.

I know it is terrifying but they really wouldn't be suggesting it if they believed it wasn't the best option.

My son has had lymphoma twice because the first time he was in septic shock and far too unstable to have chemotherapy. They were able to remove all of the first lymphoma surgically and ideally wanted him to have 2 rounds of mop up chemo but they agreed that the risks outweighed any benefits and though it was slightly more likely to come back with surgery only as treatment, it was far more risky to go ahead with chemotherapy when he was far too poorly.

It did come back 4 months later, in the exact same place but bigger and that is when he had 4 rounds of chemotherapy as well as rituximab.

My son had an allergic reaction to rituximab. They reacted very quickly and started the infusion much more slowly which he was able to tolerate as well as plenty of pre meds before the infusion started and then every 6 hours after for 24 hours if I remember correctly.

You've got this. Massive hugs xx

This is sounding more positive than the original scenario a few days ago. Tuesday will loom large in your thoughts .... I hope there will be things you can enjoy over the weekend.

Thinking of you today @Ohjoyohbliss . I hope it goes as well as possible x

You will never guess what I did last night...

Had a Chinese takeaway! I've been fantasising about it for months but my sense of taste has been so disrupted and I haven't been able to eat large portions, but I'm doing so much better that I wanted to try it.

I'm not supposed to have shellfish but I was naughty and had prawns. Thought fried rice might be a risk too far, so I stuck to boiled rice. I ate all the prawns but not all the rice. I enjoyed it. I've not had any ill effects, thank goodness.

Good for you! I’m glad you enjoyed it x

Yum! Also hoping today goes as well as can be.

A lovely friend is going to bring me home from the hospital this afternoon, all being well. We've been getting Ubers Friday, yesterday and this morning because my normal chauffeur (MIL) is away. I hope she's having a lovely time; she certainly deserves it.

Thinking of you today, and hope it goes as well as can be expected x

It was fine. Just a sore throat now. I asked for maximum sedation and it was pretty good but wore off just slightly too soon before the procedure was quite over, so I went into a bit of a panic and was trying to speak but with a mouth guard in place, that was hopeless.

I didn't see the doctor afterwards but the nurse told me that he was satisfied that he had got good enough samples to be analysed.

One lovely friend brought me home from hospital and another came and sat with me this evening so DH could go to the footie. Having been sedated, I'm supposed to have someone with me for 24 hours and it does DH good to get away for a bit.

I found them, and amazingly they are still in date.

In good news, I've been able to live a more normal life this week. I've been to book club and yoga. I wasn't capable of doing much at yoga, just sat in a chair and joined in with what I could. I was stiff last night. Just getting there was a major achievement in itself.

Progress bit by bit. It's quality of life that matters and being able to join jn with others is do important. I am glad you have had these positives in your life this week.

Lots of upcoming appointments.

Tues: meet the radiotherapists in Leeds
Weds: telephone appointment with someone from the Leeds team. I think this might be the one where they suggest I make a will and an advance directive for if I end up in ICU.
Thu am: Fortnightly counselling / therapy telephone appointment
Thu pm: Follow up appointment with my regular haematology team in Dewsbury. Presumably to give me the biopsy results - but the Leeds people might tell me that on Tuesday.
Sun 8th: Admission to Leeds in preparation for central line fitting and T cell harvesting on Monday 9th. Hopefully home again Monday night.

Busy week ahead for you so make sure you sleep and nap when you can, and take good care of yourself. Will be thinking of you Ohjoyohbliss and feel free to message as and when to reach out if you need to chat or whatever xx we are here in the virtual world to bounce of anything you’re thinking etc.

Hope it all goes well for you this week OP.

Very busy time ahead for you Joy.I will be sending positive thoughts. Also fab re the book club and yoga!

I've just booked another appointment - having a beauty consultation in Boots, courtesy of No. 7 and Macmillan. I'm guessing some skin care advice but also how to look good with sparse eyebrows and zero lashes.

I wouldn't have been interested in this for the duration of the chemo but now I think it might give me a bit of a boost. Being a Monday, I'm not planning to see anyone afterwards to show off my new look, but I can take photos. I hope I do get a new look, not half a face done so you can see the before and after side-by-side, which I had once.