Archive for October 8th, 2019

Tuesday 8th October… Still in hospital!

It’s been a week since I last posted – a mixed week with good and not so good days!

I finished the chemo a week ago and the WBC count is falling nicely, but the side effects have been difficult – loss of appetite, sore and drymouth and general malaise. Some days have been better than others, although as time goes on I am feeling better. I’m certainly sleeping better for the last few days.

The dry mouth and throat has made swallowing some of my meds difficult, although where possible they have been switched to soluble versions. The PICC line has been good making IV infusions and taking blood much easier.

My appetite is returning slowly (I was threatened with a Naso/gastric tube!) but mainly soups and soft food with some high calorie supplements (Scandishake and Fortijuice) which has kept my weight up, although I do have a bit of muscle wastage.

The next question really is the maintenance therapy and the option being discussed at the moment is Lanlidomide – I think I have mentioned that it is a Thalidomide derivative and can boost my immune system to get my donor lymphocytes working again. Meanwhile the transplant team here are in touch with the Antony Nolan Trust to try and yes k down my donor, a nd if possible harvest some more lymphocytes.

And hovering in the background is the possibility of CAR-T cell therapy, although that is only just being developed for Mantle cell lymphoma and there are currently no trials planned. The team know I am a volunteer! 🙂

I’m not sure how long I’ll stay in hospital – looking after myself might be a bit challenging at the moment, simply because I am a bit weak, but once my strength returns I should be OK!

So it is a case of Onwards and Upwards – just a bit more slowly than I would like!

(And thank you for the comments on the last two posts – I have now replied to them!)

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