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Morning cuddles with BorisGWP
(c) Harveywetdog |
The title of my last blog was "the stable phase" and that's proved to be more or less the case. I've maintained Venetoclax at 50% dose, I've kept needing blood transfusions and I've completed Obinutuzumab but there has been some small improvement in my numbers and my overall health. Next week I enter cycle seven of twelve so that puts me at the half way point I believe. Of course you need to add something Churchillian about this being the end of the beginning rather the beginning of the end but overall I feel pleased with progress and the fact that I've been able to get out to a number of events to video across the summer.
What has been important has been to pace myself at events and not take too much on; social distancing gives you a bit of an excuse to be anti-social and hospital appointments have meant I've missed some days at competitions, for example I only did one dressage day at Hartpury Horse Trials and one circuit of the cross country course. I also have to be careful with the weight of the PXW-Z190 on cross country although I did use it for the Bicton 5 Star and the final day at Weston Park. At Hartpury I used the HXR-NX80 because I thought it might rain and I also used the NX80 at Blenheim as it was going to be a long day.
But getting back to treatment I'm now on monthly consultations and as I said above my figures are gradually improving but not at the rate I would like. My consultant still thinks my marrow is not strong enough to take the full dose of Venetoclax although he did agree to cutting back my Filgrastim injections from 3/week to 2/week. I also said I wanted to move to transfusions every two weeks but that was a mistake as I found out at Weston.
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Final bag of Obinutuzumab
(c) Harveywetdog |
I had a transfusion on 28th September and arranged the next for 13th October. Obinutuzamab Cycle 6 had been on 7th October so I was keen to avoid a transfusion that week. Obviously I felt I could go two weeks but there was also an element of wanting to kick start my body into action; it doesn't work like that I found!
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Ready for Weston
(c) Harveywetdog |
Weston fell on the 10th October and I felt ok and in line with what I said above I kept to half a day and concentrated on the Novice classes. I also had it in my mind that Weston is pretty flat only to find that Janet had redesigned the course again to make better use of the terrain - in other words make it less flat. On top of all of this someone had decided to take Junction 11 of the M6 out of action which added to my driving time. The reality was I was blowing a bit getting the Z190 around the course and although I had a lovely final day to my season I was glad to get in the car and drive home (via darkest Wolverhampton to avoid the M6).
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End of the day at Weston
(c) Harveywetdog |
The 12th October was blood test day (I always have the test the day before my appointment). About lunchtime I got a phone call from one of the Edward Jenner nurses who was worried about my haemoglobin level (56) and the fact that my cross match sample hadn't been correctly signed for and needed to be repeated. 56 is low and is getting near the level where they ask you how you are managing to walk, let alone do two circuits of a cross country course. The end result was she had to bring the figures to the Doctor's attention (and I had to go back to the EJU get my cross match taken and correctly signed for). I was a little bit worried that they may want to have me in as an inpatient but I spoke to the Doctor, the Doctor spoke to the consultant and we agreed that I'd have the transfusion on the 13th October as originally planned.
On the 13th October I had three units of blood, which made for a long day, and which should have pushed my levels up to about 86 (normal is about 138 grams per litre). I was tested again on 18th October and my level was 68 so that meant another three bags of blood that day. I had an interim test on the 20th October when I was at 91. I think I'm dropping about 3 to 4 grams per litre per day so that is definitely something I have to discuss with my consultant when we meet on 2nd November.
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I've painted the house as well!
(c) Harveywetdog |
So finally let's talk about Covid vaccinations, or third primary vaccinations to be precise. Back in early September the JCVI decreed that all immunosuppressed people such as myself should have a third primary vaccination; not a booster, but a third primary with a booster six months after that. This decree seemed to fall on largely deaf ears, possibly because the booster programme was announced shortly afterwards.
It first came to my attention in a video by the Leukaemia Care charity with the strong message to contact our GPs. There was a bit of backwards and forwards between the GP and the EJU until the GP finally accepted it was their responsibility to deliver the shot. However the bottom line is I have still not received it as the surgery claims they cannot get hold of the vaccine.
Bit of a poor show by the NHS, but I live in hope that I will receive my jab in the next week. I'll keep you posted. In other news I'm also planning to upgrade camera number one to a PXW-Z280 - a bit of spending therapy - I'll keep you posted on that as well!
My HB level on 27th October was 86 so I’ve only dropped 5 in the past week which is good and I’ve been invited for my third primary vaccination!
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