Tomorrow we get the latest blood results and Husband has a CT. It could take a month usually to get the results of that but there’s a radiologist on the MDT team so they should get results at the MDT.
We’re really in need of answers: what cancer is it, what treatment is available and what we can hope for. But answers are in short supply.
Husband has MYD88 at 13% so could have SMZL or WM or both. The original diagnosis was SMZL, the working diagnosis now is WM.
We did get an amusing answer about the spleen they removed years ago though. Spleens should weight around 250g, Husband’s was 1300g…
Bloods are stable!! Both proteins and haemoglobin are .1 in the right direction.
We asked the lovely doc why Bendamustine and Rituximab were being suggested given that the remission had been rather short. He looked a bit shaken, consulted the records… checked down a few layers in the file system… The system didn’t show him that Husband had already had Bendamustine. He apologised and said that he would make an urgent note for the next MDT.
Doc rang just 2 days later. The CT showed that the lymph nodes were better than in the last scan in 2022. The advice is to continue with Ibrutinib until we need to change and then move to Zanubrutinib. There’s been no mention of what, if anything, comes after that. But for now we have a plan 🙂 .
Not so long ago one of the docs said that there was no point moving from Ibrutinib to Zanubrutinib because they’re too similar – same family of drugs. He suggested chemo, to give the body a break from treatment (otherwise it gets used to Ibrutinib etc) and then move to Zanubrunitinib. The problem is that Husband has already had chemo. And Zanubrutinib is still the same family. But currently it is the plan. We hope it’s not too closely related and that it can do some good.
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