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.)

OP, you have had a difficult year - and that is a massive understatement. I think it’s ok to allow yourself to feel sad for the things you have missed. It’s only natural! Of course the most important thing is that you made it to today but also, it’s important to acknowledge that nothing in this process is easy. I have been following your posts from the start of the previous thread and you have been amazing through it all. I hope posting here has helped you. Sending lots of positive vibes for the next steps and beyond.

I don't think I mentioned that the CNS responded about the dizzy spells that it's unlikely to be from the CAR-T, so I should contact my GP if it continues. It has continued, so I rang the GP this morning and got a call back.

Usual advice: drink more water, stand up slowly, take my BP sitting, immediately on standing, and after standing for a few minutes. Write them down! Also get bloods done to check for anaemia etc. I might have that done on Monday when I go to Pinderfields for my IVIG infusion.

I had my bloods done on Friday at the community place. Just seen the results on the NHS app and they are normal, although they only checked B12, ferritin and folate.

Today I'm having my second IVIG infusion. My blood pressure started at 110/61 but has dropped to 89/38, which is extremely low, even for me. I think 38 is the lowest the diastolic has ever been. I remember it being 80/40 when I was an inpatient in Leeds.

Because of that, they haven't been able to increase the infusion rate as much as hoped, so I'm going to be here for a while yet.

Hope it goes well; even if a bit more slowly than hoped.

Thanks, it went ok once they got the cannula in. That took three attempts so I'm all bruised on both arms.

Then I got home and DH said "What's that on your sleeve?" A large black patch on my pale blue denim jacket. Yes, it was blood. What a mess. I've cleaned up my arm and it seems to have stopped bleeding now. My plasters seem to have lost their stickiness so I've got a child's ladybird plaster on it now. It was either that or a huge dressing.

I hope the blood comes out of the jacket. I asked DH to put it on a cold wash but apparently he couldn't find a cold setting so who knows what will happen.

I had similar happen when having blood taken - it was all over a white top! - and the surgery floor. It was hard to soak it in cold water because the heatwave meant the water coming out of the tap was warm!

I hope your jacket recovers.

You had a really hard year OP. I'm sorry you don't have (yet) the energy required to do the things you like the most. I'm keeping my fingers crossed this time next year you are already travelling or planning to do so.
I'm happy to hear your DH is great, you so deserve having someone like him.
Hoping your blood pressure will recover fully, the dizzy spells dissaper and your energy will come back little by little.
x

Was that recently? With the mention of the heatwave it makes me think so. Did you manage to get it out?

I had that once too, years ago. It was a trainee doing it. I almost fainted at the sight of all the blood pouring over the table and I've never let a student do it since. I know they have to train, but train them on someone with easier veins than mine.

I almost wore a pale top today but went with a black T shirt in the end.

That's lovely; thank you.

What a lovely comment from @Manyredpoppies❤️ I agree entirely.

It’s no wonder you are dizzy with such low numbers, as you say. Will they do haemoglobin and platelets ? Both of mine are low so having them repeated.

when things are more stable, would you consider a small treadmill to build up your stamina if you have room for one? A friend of mine got one off Amazon and is doing very well with it. I’ve recently bought an elliptical trainer and it is great, especially with some gently motivating music.

Today I saw the lymphoma doctor at Jimmy's. I've always seen the same consultant in that clinic; I knew she was on holiday today so thought it would be someone new. I can't remember his name but I did see him when I was an inpatient and he was lovely.

Nothing really new. He was surprised the GP had only ordered B12, folate and ferritin bloods last week, thinks it may have been a mistake and they should have been add-ons to a FBC. But I had bloods taken today so they will get the FBC from that. I showed him the blood pressure readings from yesterday and he didn't seem too worried. He did say that I looked a bit pale, which is unusual as people normally say "ooh, you do look well" even when I feel like death warmed up. He said it's normally the systolic rate that affects dizziness and they're not too worried about the diastolic.

I said that my biggest worry is how I would know if I relapsed, now that I'm not having scans or even frequent bloods. CAR-T therapy has a less than 50% success rate, so relapse is more likely than not. I did the Aleta trial in the hope of improving those odds but, because it's a trial, we don't know. He said I'm right about all that but they will keep monitoring my bloods and, although there's no specific tests for lymphoma, they will look out for things changing, in combination with how I feel.

Originally I didn't have swollen lymph nodes in obvious places like neck, armpits and groin, they were all deep in my abdomen. He said if it does return, it could be anywhere, and at least I know what to look out for. In his experience, random scans (without other symptoms) rarely show anything. The first indicator is usually the patient "not feeling right." The danger is that every tummy ache will send me spiralling into panic.

I also asked about vaccinations. The schedule is normally determined by the CAR-T team starting six months after CAR-T. That will be September, but I'm not due to see them until October. He said he will get the schedule sent to my GP, cc me. Mind you, I believe it normally starts with flu and covid jabs and they might not be available until October.

They will discharge me from the lymphoma team back to my consultant at Dewsbury but I'll still have follow-ups in Leeds with the CAR-T team.

I think that was everything.

The first indicator is usually the patient "not feeling right."
I can understand that must feel difficult and put you on edge. Hope you can relax a bit.

I did get the blood out of my top thanks - I am on anticoagulants so it is a regular occurrence.

Stay strong .....

Had awful diarrhoea in the middle of the night. It could possibly be an after effect of the IVIG but it's probably because I ate an out of date sponge pudding with cream yesterday evening. It looked ok but might not have been. I'm ok now.

Hope the squits settle. Maybe avoid out of date cream!! - so tempting though.

Thanks. I've been fine ever since, so it probably was what I ate and once it was purged from my body then everything went back to normal. If it were a reaction to the IVIG (it's a known side effect,) I would have expected it to go on for longer.

Good to hear it is better now ...

Good to hear it is better. Don't eat out of date food Joy! You have a lot going on and have been through a lot. Eat grub that is in date!

Agree with everyone about being careful and not.eating food that is passing the Use by Date. It's perishable food that we must be strict about.
But I'm glad it resolved I hope you had a good weekend and managed to do something you enjoy 💓

I have been extremely careful with food, and so has DH, but recently he's been making noises about throwing too much out and the waste¹, plus I really fancied the pudding and enjoyed it. I've not been as careful since my neutrophils recovered back to a decent level.

Last night we had a Chinese takeaway and, for the first time since getting ill, I risked the fried rice. I really enjoyed it and have not had any adverse effects.

¹ Not that I'm blaming him in any way. Although this week he has bought me "breakfast juice" instead of orange or apple juice. It's a blend of clementine, orange and grapefruit juices; very nice. Trouble is, I'm not supposed to have grapefruit juice, or at least I wasn't. He knows that. Although I've just checked and it's one of the discontinued medications that was incompatible with grapefruit, so I should be ok now, hopefully.

I've just received my vaccination schedule in the post. In a month's time (six months after CAR-T) I should be vaccinated against diptheria, tetanus, pertussis, polio, haemophilus influenz b, hepatitis B, streptococcus pneumoniae PCV, shingles, neisseria meningitides, seasonal influenza (inactivated, not live) and covid-19.

Further vaccinations follow at 7 months, 8 months, 18 months, 19 months, 2 years, 3 years and, in the unlikely event that I'm still alive by then, 14 years.

Most travel vaccinations (Japanese encephalitis, rabies, typhoid and cholera) are contraindicated and that might be a bit of a worry if I ever get back to travelling. I've had all of those jabs, except encephalitis, for previous travel. I'm too old now to get the yellow fever jab again. I can also show my old yellow fever certificate if required for entry into a country.

I’ve recently been invited for my flu jab so it is available in some places. I looked at travel insurance and was horrified at both the cost and the limitations ( under the post office one which is meant to be good, I couldn’t visit Spain but France was ok.) I guess it’s because I have several different chronic but serious issues, any of which could suddenly become life threatening, but are unlikely to. There must be better policies out there but I didn’t pursue it for now.

i am sorry they have only blood tests and your reporting of symptoms to go on regarding relapse. As you say, what a way to fuel anxiety. Before my brush with the grim reaper I never gave a second thought to aches and pains and the odd weird symptom. I have to work very hard not to google everything now and to keep the anxiety in check.

@Words
For travel insurance you probably need to go to a specialist insurer such as Avanti, Insurancewith, All Clear etc. I recommend Avanti because I spoke to a lovely member of staff who was so helpful and I got a policy sorted out quickly and for a good price.

I've also been told that Insure With, AllClear and Avanti are the best ones to try for travel insurance, and that you should arrange it over the phone if possible rather than struggling to understand the questions on their forms.

That’s brilliant, thank you both.👍

I've signed up to walk 30 miles in September for Cancer Research (they sponsored the Aleta trial I've done.) Hoping it will give me motivation to get out and walk as well as raising a bit for a good cause. An average of a mile a day should be doable, as long as it doesn't rain all day every day.