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.)

That’s just nuts that they won’t give you infection preventatives- for all the reasons you describe!!

I've learned a bit more about it (IVIG): it's extracted from donated blood plasma, so I guess there aren't huge supplies of it, so it kind of makes sense that they ration it for the sickest people.

I'm sorry you are missing so much havung some quality of life. It brought some tears to my eyes, humans are really made to be beside other humans.
Please be sure you will be going to pub quizzes, watching a match in the company of others, going to the theatre or enjoying trips again.
I totally understand what you are going through. I have been there while in recovery. a decade ago. You won't know yourslef once your immune system goes back to what it was.
It will happen.- I promise!

At least I'm still here to moan about it. I'm wearing the summer pumps I bought in the January sales in the hope I would live long enough to wear them. I'm eating well enough that I'm starting to think about how not to gain weight, instead of fretting about losing it¹.

On the other hand, the risk of relapse is quite high, and it can take many months or even years after CAR-T for the immune system to recover, so I'm worried that I might not get back to doing all those things before I relapse and have to start some other treatment and be back to square one.

¹ Before cancer, my BMI was at the lower end of the obese range. I had been that weight for years. Now it's at the lower end of the overweight range, so technically I should lose a few more pounds. Obviously my main focus is on good nutrition, as I still need to regain health and strength. The consultant says I need a high protein diet. Losing more weight is not a priority but I don't want to gain any. Hopefully as I can exercise more, I will reach a balance. I used to enjoy swimming, but that's in the "too risky" category too. And I can't do it with a PICC line.

When does your pic line come out? Can you do weights? Maybe see if you can build up muscle rather than loose weight. Muscle burns more calories and god forbid if you did relapse you don't want to be anywhere near frail. You have seen how weight falls off when your ill. I think you need a bit of bulk in reserve for that rainy day. My mil has always been extremely slim. Everyone seems to envy her. Then she had a stroke and just one week of being on hospital she was under six stone. Ie slim people have very little buffer. One or two weeks of not being to eat could take them into very underweight.

Just my musings.

@NotPerfectlyAdverage
My PICC line might come out as soon as next week. I have my last Aleta dose on Thursday and a follow-up blood test on Friday and they might remove it after that. I know they like to remove them as soon as possible because it's a potential source of infection. And as the tube ends very near my heart, if an infection travelled through it, it could be extremely dangerous.

It's one of my questions for the CAR-T consultant tomorrow. Do I need ongoing blood tests and, if so, can I keep the PICC line? Since I got over the initial fear of it, and the initial bruising, I've loved having it. Yes, it makes showering tricky and occasionally gets a bit uncomfortable if the ends have moved and I get pressure in the wrong place, but the ease with which they can take blood samples and administer IV medications far outweighs any minor inconvenience.

In terms of exercise, I'm not strong enough for weights yet. I'm at the "gentle exercises for frail old people" stage. I've been viewing some videos and now I just have to make the effort to do them. I enjoy walking so that's good. A bit of gentle yoga. DH has an exercise bike so I might have a go on that today, just taking it easy. (It's rainy so I'm not going for a walk.)

Well, this is annoying. This week I don't have to go to Leeds for the Aleta trial but my PICC line maintenance (flush and dressing change) has to be done every Friday. The last two times, it's been done in Dewsbury, which is closer and more convenient (and cheaper by taxi.)

However, I had an appointment with the CAR-T consultant booked for Leeds tomorrow, so the trial team agreed to do the PICC maintenance for me. But because it's not a trial appointment, we have to pay the transport costs, normally at least £35 each way.

At approximately 4.30pm today, I received a message via NHS Net, saying that my clinic appointment was cancelled due to unforeseen circumstances. I rang the CAR-T CNS number and left a voicemail. I rang the haematology clinic number and left a voicemail. Presumably they had all gone home at 4pm. Sent me the message then did a runner.

I phoned the trial team and one of the CNSs answered, hurrah! However, she said it was probably too late to arrange for the PICC line maintenance to be done at Dewsbury in the morning, although they could try ringing them in the morning to see if they could do it in the afternoon. I have plans for the afternoon, something I'm looking forward to and taking a friend who is also looking forward to it.

If they had cancelled the appointment earlier in the week, I could have gone to Dewsbury, which would have been quicker and cheaper. Now I'm stuck with having to go to Leeds for no good reason.

That sounds extremely frustrating and really annoying!

Hi Joy. Sorry about the cancelled appointment and afterwards not allowing any response from your side, I hate that. By the way apologies English is not my first language even if I use it for the past 25 years, in case I sound awkward!

Regarding the exercise, please be patient. Easier said than done but think about it. A lot of people can't be bothered, and there you are, wanting to do more than gentle exercising and walks. Fair play to you. Do not worry, one day you will feel normal again. And you will be able to appreciate exercise and everything else more than people who never had to go through what you are going through.
I have to thank you for this reminder. I had a shit week in work, due to stupid politics and never ending useless meetings. I was feeling down. And you just remind me what is important so thank you. You remind me that once in the past I found very hard to go out and walk any decent distance, I was constantly fatigued and wanted desperately to go back to normal. And I can run now and I do. It's important never forget that. It's all that matters, the stuff we can do. You will be able to do more and more, Joy. Please let us know how did you get on if you went for a walk or tried (gently) the bike. All the best. ❤

The CAR-T CNS did phone me back eventually. She said they won't see me until after my next scan. The scan is 2nd July and I've subsequently had the appointment through for 10th July. That seems like ages not to be seen by a doctor. (Well, I'll see the Aleta doctor on Tuesday but that will be the last time I see her until after the scan.)

I've already asked for my medication to be reviewed but not heard anything back. When I was an inpatient, one of the doctors said that it should be possible to reduce or stop some of them once my neutrophils rose to normal levels. Neutrophils are up now, although lymphocytes and IgG are not. I'm currently taking an antacid, anti-fungals, anti-virals, antibiotics and blood thinners every day.

For useful gentle exercises look at will Harlow on YouTube.
All the best.

Saw the trial consultant today and, contrary to what she said last time, she is now going to put me forward for IVIG transfusions, as my lymphocytes and IgG are not increasing. She estimated that I might need them monthly for around six months, after which the hope is that my body will make them independently.

Of course, as I've not caught any infections, the panel might refuse the request.

I hope the panel make the right decision for you. 🤞

Still reading everything and rooting for you..😘

I am happy to know they are reconsidering a previous decion, the transfusions will boost your immune syetem. Best of luck Joy x

Last Aleta treatment today. I got here just after 11 because it's not normally available before that, but they like to start as soon as it arrives. Today the nurse was phoning and phoning but it didn't arrive until almost 1pm.

Hoping you are feeling well after the treatment OP x

How are you feeling after your last appointment Joy? Any update on the IVIG transfusions. Perhaps chase them and stress it’s a quality of life issue because you are frightened to go anywhere. Unfortunately it takes having to be pushy to get what you need with the NHS x

Oh and to answer your earlier question re pineapples - on the cruise my sister went on people had pineapple magnets stuck to their cabin doors! People travel prepared - how the other half live eh?

😂

Where do they find the energy!?

I'm feeling fine - well, exhausted with the heat but that would probably be the case even before I got ill. Suggested to DH we should go to NW Scotland where it's much cooler and rainy but he's not keen. Slightly dizzy when I stood up just now so I'm trying to drink more, on the assumption it's due to dehydration.

Haven't heard anything re. the IVIG, so I'm assuming it hasn't been approved. Haven't heard anything re. the bowel test / colonoscopy yet either, so I will chase that.

😆

My CAR-T CNS just phoned me. She is of the opinion that I will be getting IVIG, in which case I should keep the PICC line, or possibly the subcutaneous form of it, (SCIg) which I would have to inject myself. I'm needle-phobic and don't think I can do that, especially as it should be done slowly, over several minutes, so not one quick stab and done. I feel pathetic not being able to do such a simple thing but I honestly don't think I can.

So I will keep the PICC line in for the next couple of weeks. Maintenance is being done in Leeds tomorrow and she will try to arrange it for Dewsbury next week. Then at my appointments on 7th or 10th July they will decide whether/when to remove it.

I won't be getting GCSF injections because my neutrophils are above the cut-off point. I said but what about the lymphocytes and immunoglobulins, they are still so low, but she said they only look at neutrophils when considering GCSF.

She said I need less frequent blood tests now because my bloods are doing exactly what is expected. If anything was a worry, e.g. platelets, haemoglobin, neutrophils they would test more often, but it's all going the right way, so they don't need to. This is very good news!

Hi OP. That is absolutely fantastic news. I'm delighted for you. Your blood cells are responding well to the treatment, that's excellent.
Sorry you are feeling dizzy/ tired. This heat doesn't help either. Take it easy and enjoy the good news. It made my day :)