My haemoglobin count seems to have been stabilised, in the higher 80s. The last three blood tests said 86, 89, 88. That is high enough for a relatively normal life, and much better than it was, but not high enough for strenuous exercise. I can manage walking on the flat for a mile or two but hills are difficult, and you can forget the Pennine Way. A count of 125+ would be needed for that.
So when it came time for review with my consultant Dr Oni on 18th, I was keen to find out what happens over the next few months and how it may help. I got rather more than I bargained for!
Dr Oni said she was pleased to be able to tell me that they have now arrived at a definite diagnosis: I have Waldenström's Macroglobulinaemia. Click on the link for more details, and more ridiculously long words .. basically, some of my white blood cells are cancerous and this is affecting my immune system and also constricting red blood cell production (hence the anaemia). It is a rare disease, wouldn't you know? It is a form of "Indolent lymphoma," which sounds much more like me. But the bottom line is that I do have blood cancer, with all of the baggage and restricted outcomes that may entail.
What the hospital is proposing now is a full-frontal attack involving a five-month course of chemotherapy, using a cocktail of drugs: good old Rituximab, cyclophosphamide, and a steroid called dexamethasone. Nothing has been booked yet, and I'm unclear about how many actual dosing episodes are involved .. it won't be every week for five months, they will space it out.. I'm hopeful that side effects will be limited, the rituximab I had before went well, but we shall have to see what happens. It affects different people in different ways I expect.
I am reasonably relaxed about all of this; I am still living a comfortable life, and things are as they are; so no point in stressing about it all. The NHS generally and my consultant and Maidstone hospital continue to inspire confidence. I am concerned to do whatever I can to improve the odds, but at present I don't see much to be done. I will get whatever exercise I can, keep positive, and I will keep a close eye on what the hospital is proposing. I found a clinical trial that is interesting, and have asked Dr Oni if she thinks it has any merit.
Dr Oni replied, as follows: "The RAINBOW trial, looking at R-ibrutinib versus DCR unfortunately completed recruitment last year. I would certainly have supported your entering into it if it were open, as it offers the possibility of chemotherapy free treatment." So the chemo is now booked, four instalments, three weeks apart. The first one is this coming monday 30 June, the last on 13 October. So that is this summer accounted for!
On the strength of the haemoglobin count I will go on the Linton Walk tomorrow, 26 june, and see how I get on! .. to find out how that and the chemo went, click here!
