Hi all, I hope you are having a pleasant run up to the summer. It’s been both hot and cold in the UK, depending on the day, so hopefully something for everyone….

Anyway I have some more progress. I mentioned a few weeks ago I have had a cold cough thingy for eight months. Well I ran out of patience and called my Lymphoma nurse Nic Gill. She is always excellent when I need to break glass and get help, and this was no different. I said it was frustrating and keeping me tired etc and I was used to being about 60-80% but it would be nice to be back to normal.

Anyway blood tests occurred a few days later, as did a sputum sample (snot in a pot) and an X-ray. I then got my results courtesy of a direct call from Doctor Hodson to discuss.

Turns out the eight month cold cough is actually a haemophilius influenza, and I’ve had it for the whole time. That’s right a kind of flu that has been with me for eight months and after six rounds of antibiotics it’s still holding on.

The upshot of it all is that after rituximab (three years ago in October) my immune system has recovered, apart from the immunoglobulins. These little guys protect you against a whole range of conditions and without them you can get recurrent infections. Now it looks like these guys are gone, or at least aren’t coming back anytime soon. Traditionally they are reduced for about a year or a year and a half, but in my case they haven’t come back. This has left me with the rather catchily named hypogammaglobulinanemia (try saying that ten times fast)

This lack can lead to recurrent conjunctive infections, (I have had conjunctivitis for eight months as well) general infections, cold, cough, stomach issues, general to heavy fatigue, bronchitis, pneumonia. There is also a 2% cross over of celiacs and immunoglobulin deficiency, as well as a tendency for low immunoglobulins to run in families (although mine is from the medicine). It can be life limiting and have severe repercussions but it also means you are likely to have a lot of infections and find them hard to shift. (I feel seen).

Anyway there is treatment for this, but it’s quite expensive (about 3000 pounds a month, thank you NHS(interestingly it’s about 10k dollars a month, which you hopefully have insurance for…. Hopefully))  and you need to jump through a few bars to get it. Turns out having influenza for eight months clears those bars, so I start immunoglobulin therapy.

This has a few flavours but the one I have picked, for now, is the intravenous infusion once a month in hospital. They will give me other people’s immunoglobulins as a transfusion and it will take around 4.5-6 hours at a time. So I get to sit and read my Kindle and do some work in a new setting. Variety really is the spice of life. ;).

This does have some possible side effects but most of them are infusion reactions, headaches, fever etc and only occur whilst you are having the treatment. It does raise the possibility, slightly, of a blood clot etc as well.

The plus side of it is that I would have an operating immune system again. As long as it was topped up every month I would be back in normal (normal for an average Joe, not me) shape. Able to not have an eight month influenza.

So that’s the plan. It’s ongoing and monthly.

I did and do have some other options. Apparently you can do infusions at home, with training, but I figured try it in hospital first to work out any side effects. Then I may change to home administration. I didn’t ask too many questions about this yet, but let’s give it six months of once a month at Ipswich hospital and then go from there.

There was also some good news tied into my tests, which I probably should have led with (although people at work will freely admit I always lead with ‘things to be fixed’ and ‘ongoing projects’). This is that my blood tests show no unusual rise in my lymphocytes. They remain in normal human range. Given it’s been three years since treatment Doctor Hodson said this means my next treatment of chemotherapy is much more likely to be around ten years, not five (the range after treatment for the next treatment is usually between 5-10 years) and it could possibly be even longer. As it stands my lymphocytes are much lower than when I was diagnosed at 30 and then I needed eight years until treatment.

That’s good news. The chemotherapy worked well for my cancer. (It is incurable, so it will eventually come back). It also worked well for immunoglobulin reduction, but let’s not split hairs. I also get a peaceful sit in the day unit once a month to read books and send emails and in return they get rid of this eight month cold cough thing. All in all a good trade.

I start next Friday on the immunoglobulins. I’ll let you know how I get on.