Today I was to find out how my blood did in its test. I wouldn’t go quite so far as to say that I approached the consultation in Haematology with trepidation but we were certainly hoping that my platelet level would at least still be in double figures. So we saw a registrar who told us that my platelet level was now at thirty six. Time for a quick discussion with my consultant. He said that as a rule of thumb they were happy when people had a platelet level above 30, below that they would need to consider some form of intervention. Therefore it was decided that we should go for Plan C.
Plan A was a course of steroids (prednisolone) which dropped from the initial 60mg blast in A&E to 40mg per day and was then stepped down at regular intervals. When the prednisolone wasn’t having the desired effect on platelet levels but was messing up other things such as blood sugar levels we moved on from that dropping the dose to 10mg per day and going on to Plan B. There are other good and bad things about prednisolone – one of the good things is that its side effects are fairly well known so you can blame all sorts of things on it such as if you have mood swings or get a bit short tempered at times (which I have done). The bad thing about it is that it probably caused the mood swings or short temper in the first place.
So on to Plan B – rituximab. This is given intravenously once a week over four weeks and according to NICE over 10% of patients can have a reaction such as fever, chills or even vomiting during or shortly after treatment. It can also reawaken dormant viruses so I was scheduled to have a blood test to check whether I had some of these viruses (I had had hepatitis in 1969 but it was almost certainly not the type they would be concerned about). It appears that I had been booked in to start the four week course of rituximab on Friday. This was now going to be cancelled.
Plan C is carry on with the lower dose prednisolone and see what happens with my platelets. Is the improvement a blip or is it the start of an upward trend? Time will tell, so back in three weeks for another blood test which this time will also include a test for the dormant viruses in case the hoped for trend turns out to be a blip and we have to revert to Plan B. If the trend continues then perhaps we can relax a bit although I will continue to be monitored regularly.
ITP (Immune Thrombocytopenia) continues to be a bit of a mystery in that it is assumed that it is kicked off by some event such as a viral infection but by the time you realise you have got it the cause has cleared off. Only if you have been closely monitored throughout your life will it be possible to trawl back through your history and more closely point to a possible cause. Perhaps a future generation of smart phones or watches with a ‘Health’ app that monitors your vitals will give us some clues. However it is likely that while, say, 70% of people with ITP have had infection ‘x’ or ‘y’ only <0.01% of people with infection ‘x’ or ‘y’ go on to develop ITP.
This post also marks a milestone in my blogging – if I include the reposting of Victoria Scott’s blog about her sister it is my 50th post. If I don’t include it I can crow about this milestone (again) in my next post. When I started I said “Not sure how it will progress, I may put it with my collection of Newsletter Number 1’s which never progressed to Newsletter Number 2’s, in which case this will be my first and last post, or I may continue for the next 15 weeks and beyond.” As you can see I have continued well beyond 15 weeks.
I have enjoyed writing it (and plan to continue) and hope that you have enjoyed following my journey. It has also given me a cathartic outlet and I found I was getting support through people commenting or just ‘liking’ a post. As one said “I’ve learnt more about prostate cancer in the last 10 minutes than I have in the last 69 years.” What I hadn’t expected was that the blog would be found and followed by complete strangers. That has introduced me to their blogs. I had never realised what fun (heavy sarcasm here) a prostatectomy would be. (Glad I avoided that one, although if the cancer is caught early enough it may be a good option.) But more importantly it has put my position into perspective.
So here’s to the next 50 posts and possibly, but not necessarily Plan D.