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.)

Hi Joy. I agree with previous poster.
I'm very happy to hear your good news, it's all going the right direction. It must feel frustrating not having anyone to do the Immunoglobulin injections, as you have been approved. Hoping they will find a way to make this happen, via cannula or even better subcutaneous form (finding someone).
Keeping my fingers crossed for you.
Hoping you are keeping well in this heat! x

On Friday I saw the CAR-T consultant.
Most of my blood results continue to improve:

Platelets and haemoglobin are not yet at normal levels but still rising. The ongoing anaemia (low haemoglobin) is contributing to the fatigue.

Neutrophils (white blood cells which fight bacterial infections) are up to normal levels, yay! This means that I no longer have to stick to such a restricted diet (although should still exercise caution.) I can't tell you how much I am looking forward to having some blue cheese! Also I can drop two of the five types of pill I've been on. Dropping antacid and antifungal but staying on antiviral, antibiotic and blood thinners.

Lymphocytes (white blood cells which fight viruses) are still very low, and likely to remain so for a long time yet (months to years.) This means I still have to avoid crowded places and people with infections, so going to the pub quiz or to watch football in the club is still out of the question. Foreign travel is completely off the agenda because of the high risk of catching an infection and ending up in hospital. Aargh! This will be reviewed towards the end of the year if my bloods improve. I will stay on antivirals possibly for life, but as a minimum until I have had all three doses of shingles vaccination.

Immunoglobulins also remain low. These are antibodies in the blood stream that basically provide your immune system. They "remember" past infections and identify and help to neutralise new ones. Because they have been wiped out completely, that "memory" has been lost, which is why I will need to have all my childhood vaccinations again. However, there's no point having the vaccinations unless I have some IgG (immunoglobulin G) cells to retain that memory.

They have now (finally!) arranged for me to get IVIG transfusions starting on Tuesday and monthly thereafter. The hope is that after a few months, my body will make its own, and then I'll get vaccinations.

There is a slight risk of viruses from the donors being transmitted through the IVIG, so fingers crossed that that doesn't happen.

N.B. Some of the above may be a repetition of things I've explained before; please forgive me.

Looking much more positive.. I'm so pleased for you.. hope this heat isn't too badly affecting you.. I'm absolutely melting 🥵..

Heavens - you truly have become an expert!

Hope all the planned treatment goes well for you.

It was much cooler last night and not bad today. I went out for a walk late afternoon and managed 1.3 miles. I'm well chuffed (and exhausted!)

Thanks

I've been reading up some more about IVIG and now I'm not sure that I want it, despite having been requesting it for several weeks. Side effects include nausea, diarrhoea, headaches, fevers & chills, blood clots, kidney damage and meningitis!

As it's expensive and has been ordered for me, I guess it's too late to change my mind now. Oh dear.

Best of luck with the IVIG transfusions today. I had them myself and I think they will help with your immune system.

Well done on your long walk!!! Something to be proud of. Don't worry on foreign travelling. It's absolutely unbearable in the South of Europe weather wise. All the best Joy!

I should be preparing for an arctic cruise in August covering Svalbard, Greenland, Iceland and the solar eclipse. Not southern Europe.

The IVIG is going well. No side effects and the rate has been increased several times. Obs are good.

Brilliant to hear positive news Joy! :)

No side effects today except headache, but it's not severe so I don't think it's meningitis.

Things are getting a bit silly.

PICC line: I can have it out now, because even if I'm continuing with IVIG, it will be monthly, so no point keeping the line in (infection risk) if it's only going to be used monthly. However, until it is taken out, it needs flushing and re-dressing weekly on a Friday. Normally if I've not been at Leeds on a Friday, they have arranged for this to be done at Dewsbury Hospital (more convenient for me.) I hadn't been told about the arrangement for this week and I've been chasing since Tuesday. Then was told Mid Yorks would arrange it, so I assumed Dewsbury Hospital again.

This morning I had a call from the district nurses asking me to go to Ossett Surgery tomorrow for the line care. OK, no problem. Something made me ask if they have heplock there to put in the line after flushing, to prevent clotting. No, they don't keep that there. Can I bring some with me? [Let me just check - do I have a couple of vials of heplock lying around the house? Funnily enough, no, I don't.] So she rang my GP pharmacy. They said they need a prescription, but once they get that, should be able to order some to arrive tomorrow morning so I can pick it up on my way to Ossett. Fingers crossed!

Then the immunoglobulins: I had IVIG on Tuesday because they couldn't find anyone to do the SCIG injections. Yesterday the GP surgery rang me to say they can do the SCIG after all, so booked me a series of appointments starting mid August (because the IV one should last a month.) Great! I emailed the CNSs at Leeds to let them know and to sort out how the surgery get the SCIV supplied.

Today the same lady from the surgery phoned to say that they had misunderstood what is involved in giving SCIG; it's not a quick jab, it has to be given slowly over a longer period. They can't do that. So cancel the appointments and back to square one, which is hopefully IVIG in Leeds again.

It always amazes me that the extraordinary cutting edge science that brings us these mind-boggling and revolutionary treatments is so let down by the on-the-ground practicalities of avtially getting them into the patient.

I have similar experience over the last couple of years: heart attack, stent pacemaker etc. etc. All cutting edge stuff that is keeping me alive and all for free ... all good. But the chaos on the ground that actually gets me to the treatments or follow up has to be seen to be believed; and the differences of opinion between the various consultants does not instil confidence!

So you have all my sympathy!!! Keep your pecker up!

And... later on, I had a call from Dewsbury Hospital to say that they can fit me in for line removal tomorrow, so I won't need the maintenance. Yes please!

So I rang the district nurses' number to cancel the Ossett appointment. I mentioned the heplock which was being ordered by my GP pharmacy and she said she would ask the nurse to cancel that. What's the betting that won't be done and the whole thing will be my fault?

I remember years ago, taking my dad to hospital to have an internal defibrillator fitted. Then getting a phone call to take him home again almost immediately. They couldn't install it due to his heart rate being erratic. Why did they think he needed it in the first place?

This is unbelievable! So absurd.

Agree 100 per cent with @Mischance.

Frustrating and sounds tiring too having to keep on top of it all. Such a muddle!

Thankfully I'm well in myself at the moment and able to advocate for myself. Not so long ago, I just wouldn't have been able to cope mentally with what felt like non-stop contradictory phone calls over the last couple of days and would have handed the phone to DH and asked him to deal with it. As well as firing off emails to Leeds, of which I've sent several this week.

What happens to patients who live alone and aren't well enough or mentally strong enough to advocate for themselves? Perhaps the line care maintenance wouldn't have been done, leading to infection risk. Perhaps the line removal wouldn't have been done, so the situation would go on and on.

Oh and I've just remembered that the Leeds CNS phoned me later on to ask if I had booked the next IVIG infusion after having it on Tuesday. Erm, no, because a) nobody told me I was supposed to and b) I thought they were still trying to sort out getting SVIG instead.

And... the PICC line has gone. One less thing to worry about.

Amazing! Enjoy your freedom from it, OP

Yesterday afternoon I had a glass of wine with a friend. I've started drinking alcohol in small quantities (especially when watching England games) but I'm still mainly staying alcohol free. I just ordered a mixed pack of Kopparberg alcohol-free ciders (so basically they will be just sweet, fruity pop I suppose.) The Thatchers Orange alcohol-free I bought a couple of weeks ago is very nice.

Enjoy your Cider!

My pacemakemaker was fitted while cardiac rhythm mayhem was going on ... they just bashed on.
I am so grateful for the many procedures that have saved my life and sometimes feel guilty about feeling exasperated by the chaotic on-the-ground lack of coherence. But sometimes it just feels so basic and requiring only of a qualification in common sense!!

You are so right .... who advocates for those who are feeling too unwell to muster the energy, or who simply do not have the self-confidence or intellectual capacity to take it on?
I do not know what the answer is ...

But good to hear you are line free.