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.)

Sorry you are having to nag..that sounds rather a bore. Hopefully it is 'jyst' a uti. I am wishing you well for next few days of Radiotherapy. Tis understandable to feel scared.

Something else to be scared of: I can feel a new lump in my abdomen. It's just to the left of my belly button. The one I'm having the radiotherapy on is in my upper abdomen and too deep to feel it through the skin. I hope it's nothing serious but, you know, the chances are that it is.

I suppose I tell the Leeds team, because I'm kind of under them until after the CAR-T. I'll see if it's still there in the morning.

Eugh that's not what you want to find. Definitely tell your team in the morning after a bit more poking around if it's still palpable. Fingers crossed it's just a bit of poo working its way through. I've lost a lot of weight due to illness and can now feel what's in my bowels when I'm constipated/taking iron. I'd love for this somewhat gross reason to be the same for you!

I'm rooting for the gross reason too ......

Ditto!

Rooting for good news too. I hope dh turns a corner as well.

I'm still not thin enough to feel my poo.

The lump is still there although it's small and takes me a while to find it. Messaged my CNS this morning, she spoke to a Dr and they said watch and wait; let them know if it gets bigger or I get pain / other symptoms. Mention it to the radiotherapy team.

So I did, and the radiotherapy session itself seemed to take a lot longer today. They said they had been looking at the scan. They are going to see if the radiotherapy Dr can see me tomorrow. I'm due to see her the next two Fridays, but not tomorrow.

I've just been given the dates for the CAR-T. Lymphodepletion chemo on 18-20 March and the CAR-T infusion on 22nd.

I hope the Dr can see you tomoz..obviously! How are you feeling now you have dates for March? I hope there will be someone along with experience.Sending those positive vibes to you Joy.

I'm already in touch with someone who had the same treatment at Leeds. She has already helped me a lot.

I don't know how I'm feeling, if I'm honest.

Joy..I am glad you are in touch with someone.I reckon not knowing how you are feeling is completely understandable. You have had ALOT to deal with and are continuing to deal with so much. Hope your dh is improving.

Hi @Ohjoyohblissim just catching up on this thread. I commented on your previous thread. I also am under Mid Yorks hospitals for lymphoma and have had Car T at Leeds in January of last year and bridging radiotherapy. I hope your radiotherapy goes ok, I found it difficult going to the hospital day after day but must say all the staff were very kind and helpful.
If you have anything you'd like to ask about having car T at Leeds im happy to answer your questions.

Oh, thank you. The other person I'm in touch with had chemo rather than radio as her bridging treatment.

I've remembered who you are. Your CAR-T didn't put you into remission. Knowing that, would you still have gone through it?

How are you doing now?

Yes i would still have it. It didn't put me in remission but I got very close to it. And since Car T, although I still have lymphoma I have actually felt pretty well and have been able to have a normalish life.
I found Car T quite tough for the first few days, I had a very high temp and flu symptoms pretty much straight away. But once I got over that I was mainly bored in hospital waiting to go home.

Im doing ok now, im on a bispecific called glofitamab, I have infusions once every 3 weeks at Pontefract. Im working and feeling better with more energy than ive had in a long time. I have a PET scan next week which im hoping shows a response to the glofitamab. My next step will be back at Leeds for a stem cell transplant.

Yesterday I got fish & chips for dinner (lunch.) I ate the fish and split the chips with DH. Decided later that it was a mistake, as I developed a stomach ache and felt "off" for the rest of the day. I actually went to bed. Didn't want anything for tea but I managed a little Tiramisu pot. I had diarrhoea at bed time and again this morning, but not during the night.

My friend who is a retired radiotherapist says it's likely to be the radiotherapy side effects catching up with me. She says the two days off at the weekend will help, but be prepared for more of the same next week. I do hope it isn't, because it will make the next two weeks miserable, when I'm hoping to get out and about and do things in the afternoons and evenings.

I feel quite a bit better today but I've only had cornflakes for breakfast and I feel very full. Reduced appetite was listed as one of the potential side effects.

Hi OP. I'm catching up with the last few posts. I'm sorry to hear about the bad side effects of the radiotherapy. My stomach was in bits too and I felt nauseous all the time. Tea and toast and very plain stuff like bread and boiled rice was the only thing I managed to eat without feeling sick. Hoping things will start improving soon. I'm keeping you in my thoughts.

That’s rotten Joy, I can sympathise as often really fancy something like fish and chips, don’t often have it, then feel ill after as not used to the high fat content ….

I’ve got a bowel prep to do Monday and Tuesday ( :/ ) reading for dual endo Wednesday so will be on the toilet after the weekend with self inflicted diarrhoea ready for the camera :/ … but got to be done eh?

Do you have radiotherapy again every day next week?

Yes, every weekday for two more weeks and the Monday after. Then the rest of that week off (but I might have to go to Leeds for a PET scan and to Pinders for the PICC line fitting.)

I was hoping that DH and I might be able to get away for a couple of days before the CAR-T treatment, because it won't be possible for months afterwards, at best. We have a hotel booking which can't be cancelled but can be moved. However, not knowing when the appointments will be means we can't book anything, and I might be feeling too poorly from the radiotherapy.

It does sound tricky not being able to plan as such. I suppose at the moment it is taking each day. I do hope you are both able to get away at some point.Sending positive thoughts for the week ahead.

I hope you will be well enough to go away as planned before your CAR- T treatment.
You can celebrate each day you are feeling OK, with something small you enjoy. I am thinking of you, sending my positive thoughts. x

Radiotherapy is giving me diarrhoea, which is to be expected, and they said just take immodium, which I haven't done yet. I'm not worried about it, because it was always stated as an expected side effect.

More worryingly, I have been short of breath the last few days, which shouldn't be a side effect. I told the radiotherapists yesterday, so today I have seen a nurse, an oncology doctor, and had a chest X ray. Now waiting for the radiotherapy.

The doctor said he's not too concerned about it, although he did mention the possibility of a blood clot, which obviously scares me, but he said it's very unlikely as I'm on Apixaban. I told him the T cell apheresis had to stop before the end due to a clot in the line but that didn't seem to bother him.

He doesn't think the lump in my abdomen is anything worrying, he said several little lumps have shown up on all my scans and it might just be scar tissue etc.

All sounds good and reassuring. But not the squits - hope that settles asap.

Well that’s good they did the chest xray to check straight away the root cause of the shortness of breath, and at least you will know then for your own mind when you do get short of breath what has been ruled in or out causing it.

Good luck with your radiotherapy today.

I’m now on clear fluids only until tomorrow afternoon due to dual endoscopies tomorrow morning which I’m not looking forward to, but I know it has to be done :/.

Keep us updated Joy as to how things go today / this week. Sending much love and strength.

Good luck for today. So many things to worry about all at once. It's good they did the x ray and hopefully it's not a clot. It must be just impossible to not get run down right now. It's a shame your struggling to keep food "in" because that won't be helping anything either. Is there any merit in asking about the fortified drinks again? Just to try to get something in even it's just a tiny extra little boost?

I wish I had something more helpful to suggest. Is there a time of day when your stomach is more happy? Like eating first thing? Or a pre breakfast snack? Although when you have the runs and are being sick to urge is to avoid all food.

We need some sunshine too!