Hi folks. It’s been a few weeks since I posted and I figured it was time for an update.
Life wasn’t amazing when I last posted, but in the following half month I have kicked pericarditis and feel a lot better for it. Additionally I was told to take the colchicine for three months but only given a dose for 26 days (by mistake I think). Accordingly that ended and I decided to see how I felt without them before getting more.
The following night I went to bed with the usual sinking feeling any three year old can relate to. The next morning… I was dry. My night sweats had stopped. Since then they haven’t begun again, so that’s great news. This was (I think) largely the reason I was losing weight and I had lost nearly two stone. Since the sweating stopped my weight has begun to go up again and ive swung back up to just under twelve and a half, putting on nearly half a stone in two weeks. (Which for once is actually a positive).
Additionally my fatigue has withdrawn somewhat. At the onset of pericarditis I couldn’t do anything. Then it stabalised for a week or two at being able to do five hours of something. Work, child care etc, before needing a nap. Now though I’m up to about eight or nine hours, so can functionally do a normal day with some fatigue in the afternoon. Again much much better.
So all in all coming off the drugs and kicking pericarditis had been a very positive experience.
It hasn’t, obviously, stopped the march of my main condition though, and I have developed a series of unexplained brusies on one of my feet with seven small blotch bruises having developed. Slightly painful but nothing terrible and infinitely better than sweating heavily every night.
I also had some fun getting through to the right people to organise appointments which was a little frustrating. I now have the lymphoma nurses mobile and we have arranged my two tests for Monday at St Bart’s. This is a bone marrow biopsy at 10am and a ct scan at 7pm. (Thank you so much Max and Freddy for the lifts!) Once we have these results (earliest 11th Nov I’ve been informed) we will set course of action.
Having spoken to the nurse at length though, this is likely to be six weekly lots of rituximab. This is taken as an infusion, much like you’d associate with chemo, but actually doesn’t work the same way once it’s in the system. It doesn’t cause you to lose hair and also has been known to have less severe side effects (although this can vary from person to person and it does have side effects like nausea, lethargy etc).
I don’t know when this will be carried out but it will also be in Bart’s, and they have told me not to get public transport, so it’s going to be interesting getting from home to there. The first one will take about five hours, if all goes well the other five will take an hour and a half each. This will likely take place just before or just after Christmas, professor and covid dependant
The hope is that this treatment will reset the white blood cells to normal levels, and free up a lot more room in my bone marrow for the platelets to grow. It’s around 70% successfully, with a 20% partial success rate and a 10% failure rate. (studies vary on this and many of the papers have cross overs with patients who also had spleenectomy. They also had patients who they assumed had successful treatment, but they didn’t do all of the tests to prove it.) I have read lots of studies on this, as well as a study that compiles many of the study results, but a good starting point is here. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5457460/
So anyway this is broadly what I discussed with the nurse, although it is possible the tests will reveal something else and or the bloods will have changed and another outcome may occur. (As well as covid being a thing still in case you’d forgotten…) So tests on Monday and then watch this space for the 11th of Nov.
I’ll keep you posted. Hope you are all well. :).