I haven’t posted for a while because it doesn’t feel like there’s been much to post. ‘Stable’ and ‘not much to report’ don’t make for dramatic reading but they do make for good living so I hope that someone may take comfort in the fact that Husband is living a good life 7 1/2 years after diagnosis, a splenectomy and 2 lots of chemo.
Husband feels well and is active. We’ve managed to live a pretty busy life over the last 6 months, in between 6-weekly blood tests and hospital appointments to monitor progress. And progress it is – not at warp speed but a good steady trend in the right direction – with the odd little blip to keep us on our toes until the next visit. So here goes 6 months’ worth of blood numbers where, fantastically, not a lot happens except with the paraproteins:
Haemaglobin has been stable, checked roughly every 6 weeks, from 142 to 151, moving up and down but we know enough to know that these are good numbers.
Platelets have also been firmly in the normal range, from 323 to 387. They naturally fluctuate, going from 324 to 376 on one occasion and from 380 to 358 and then back up to 385 – but good and stable.
White cells have again been stable, from 7.4 to 8.3, moving up and down a little with no pattern.
Neutrophils too are moving around a bit but stable, dipping to 2.6 and up to 4.5 a couple of months later.
The key marker for Husband is the paraproteins. In September last year they were 20.2 – better than the 32 which was his starting point with Ibrutinib in April 2022 and far better than the 43 from early 2019 just before he started his second set of chemo (Rituximab and Bendamustine).
6-weekly checks show steady progress: 20.2, 18.6, 16.1, 14.6, 12.2, 12.7 (we didn’t like that one) and 11.9 (we liked that one!). The Doc explained that it’s not the absolute protein that is the problem – it’s the effect is has on the good cells ie the haemaglobin and platelets.
Ibrutinib is giving us hope, hope of a good remission, time to breathe and regroup. It’s not a permanent solution – there aren’t any – but it’s a very welcome, exciting and we hope long chapter.
We still wear masks in public indoor spaces and Husband doesn’t want to risk going to a cinema (so I don’t either) but we’re starting to relax a bit. I managed to get a cold – almost certainly from talking to someone outside – and I felt grotty for several days but amazingly Husband didn’t get sick. We’re hoping that this means that his immune system hasn’t given up on him yet! For now we’re trying to catch up on so many things that we didn’t get around to over the last 7 years and looking forward to getting the next MRI out of the way. Husband’s PSA is elevated and he’s awaiting his second MRI. I guess that had better be my next post!
Leave a Reply