Peter’s Hospital Diary

I’m writing this from the same ward, but in bed at Southampton General Hospital (or more correctly, University Hospital Southampton!) after being admitted on Tuesday night. But I get a bit ahead of myself…

Tuesday was a bit of a low point while I mulled over things – disappointed that the ibrutinib was losing its potency (or that the disease was developing immunity) so soon) and sorting out a few things, but my spirits improved throughout the day and at around six pm I had a call from the bed manager to say that there was a bed for me and could I get in by 10pm that night? Katie (middle daughter!) kindly drove over and dropped me off at the hospital and I arrived on the ward at about 8.

Bit of paperwork, bloods and usual adminstrative stuff and I was in! By midnight I was on a drip to make sure I was properly hydrated for the treatment.

Yesterday was slow, but I saw the senior registrar in the afternoon and had a chat. The CT results were back and confirmed what we knew – several enlarged lymph nodes in my abdomen – not surprising because I have a high white cell count and the cells reside in lymph nodes! A physical exam should an enlarged node in my neck but nothing in my groin or armpits.

So I had my first dose of rituximab last night with the pre-treatment with Piriton which makes me drowsy but given to reduce the risk of an allergic reaction to the drug. (I have had rituximab before without side effects so I wasn’t too worried) and in went the drug, followed by a saline flush. I also had Raspuricade (which has been dubbed raspberryade!) which is given IV to reduce blood Uric Acid levels and mitigate against tumour lysis.

One of the reasons for having the drug as an inpatient is because of the risk of tumour lysis (which I discussed in an earlier post) but no side effects so far!

And just interrupted by a visit by the registrar – my white cell count has reduced – it was 77 on Monday, 95 yesterday but down to 73 today which is good news! The rituximab has been divided into two doses – yesterday was the smaller one given over an hour (again to reduce the risk of allergic reaction) Today I will be getting the larger dose over an hour and then I hope discharged tomorrow.

Longer term I may have the rituximab as a maintenance dose every couple of months or so, or on a three week cycle, but that decision hasn’t been made yet.

So much better news in that there is a positive response to the drug which will keep me going! It is likely to be maintenance to keep the disease under control while other options are explored. We haven’t discussed those options yet!

Meanwhile Onwards and Upwards!