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.)

Hope the fitting went well Joy. It will be worth it once you get used to it.xx

It was ok - better than the line in my neck, anyway. The registrar started doing it but the consultant took over. Turned out my vein was a bit wiggly so it took her a long time to get the wire and tube through. At one point it seemed as if she might have to give up and try the other arm, but she managed it eventually.

When I was in recovery it kept bleeding. They all said it was nothing to worry about and it would soon stop. It didn't. They kept putting a tourniquet on it. I don't understand that, because when it was released, it just started bleeding again. At one point my fingers went blue from lack of blood supply.

In the end they changed the dressing, which they were reluctant to do for infection reasons (the recovery room is less sterile than the theatre) but it seemed to do the trick, and I was sent home.

It has bled a bit more this evening but not as much as earlier. I have an emergency number to call if I have a problem, but it's only open Mon-Fri so if anything goes wrong over the weekend, I have to go to A&E. Oh joy, oh bliss.

I'm scared to go to sleep in case I damage it during the night.

What an ordeal.
I hope you can get some rest - goodness knows you need it - and that the line is OK.
X

Hope you’ve got some sleep in

@Ohjoyohbliss Oh that sounds like such an ordeal. I have a portacath and it’s so easy to access and never had any problems. I know others have pic lines but my cancer is long term (been getting chemo for 2.5 yrs now) so I think that’s why. I hope everything is going well.

After two years of treatment for DLBCL my husband (in his late seventies) had CAR T Cell treatment last summer. The side effects were very minor and he was home in 10 days. If he was very tired he had the odd five minutes of confusion, but that was all and it only happened half a dozen times in the first two months. He recovered well and after the six month scan was told that the chance of recurrence is less than five per cent.

Happy to answer any questions about husband's experience of CAR T Cell OP.

Such an ordeal ... but hope things are settling now.

All the bast this weekend with the line. Hoping it will stay and that you manage some sleep x

Hoping you got some sleep in the end Joy, and it hasn’t bled again x let us know how you are today when you’re feeling up to it x

Oh Joy I hope the bleeding has stopped and you were able to get some sleep.

I slept better than expected but not brilliantly. It bled a little bit overnight but nowhere near as badly as in hospital.

The new dressing has puckered my skin more than the first one did. All being well, this one will be on for a week. I'll put a picture marked sensitive so you don't have to see gory stuff if you don't want to.

I had a PICC line in my arm for about 3 months a few years ago, as I was being fed intravenously because my stomach was so ulcerated I couldn't keep any food down. It certainly takes a bit of getting used to, and I remember the fear you describe, of accidentally damaging it during the night. I had a length of tubigrip that I popped over mine to keep it in place and make me less likely to roll over and catch it on something. I was also given a LimbO, which is a waterproof cover you can use in the shower, I've found a link if you're interested, it made showering a lot less stressful!

https://limboproducts.co.uk/product/limbo-xl-elbow-picc-m85/

I've also had a PICC line in my neck a couple of times. The first time I was in ITU with SEPSIS and had been in a coma for a week, so had no idea what all the tubes and wires attached to me were for. At one point I tried to run my fingers through my (pretty matted at this stage!) hair, and "pushed through" what I thought was a tangle, but turned out to be my PICC line, which I pulled clean out of my neck, complete with a little fountain of blood! Luckily as I was in ITU I had a Nurse with me at all times and she was very quick to stem the bleeding, but all I could say was "No one TOLD me!" Ooops!

You will be sick of writing Mary had a little lamb to assess the ICANS.
As for the safe dosing - phase 1 trials start off very low dose and then only increase once they find this dose is safe. The clinical trials team should be able to answer all of your questions including if you don't wish to go ahead.
In the old days of CAR-T the cells had to go to America for the magic to be done - now it is Amsterdam or Stevenage so waiting times are reduced

My husband had CAR T Cell last summer in France. His T cells went to America. As I said up thread he had very little in the way of side effects and the process was very smooth. They woke him every morning at 4 am to write, count backwards from 100 in tens (in French), and tell them the day and date. It was a University Hspital and they had been doing CAR T Cell for several years. He spent most of the 10 days watching cricket on his ipad.

Do you also know about Epcoritamab (Tepkinly)?

It sounds like it does the same job, so why should I do a risky trial for Aleta when Epcoritamab already has NICE approval?

@BatshitIsTheOnlyExplanation

Also is Glofitamab also similar?

I was told my cells would first be going to Barnsley (!) then somewhere in Europe, then the USA and finally back to Leeds. It probably depends on which CAR-T one is having.

There are several products available - licensed for different diseases and age groups (children) with the "magic" done at various sites.

My husband had Kymriah. His cells went directly from Rouen to America.

My PET scan result is excellent - no new tumours and the existing one has shrunk a lot from the radiotherapy. All very promising for the CAR-T as a low tumour load correlates with more successful outcomes and less side effects.

That is wonderful news! So pleased for you.

I've signed up for the Aleta trial. I'm in cohort C which means that I will get the lower dose to start with.

That is so good to hear re your PET scan.