It’s the hospital review appointment. Yet another day of hoping for good results whilst bracing in case. Husband is clearly a bit concerned about his blood results. The red cells have dropped each time in the last few months. Doc said that if they do this time “We’ll have to look at things”, whatever that means. We don’t really want to know yet.
The haemaglobin hasn’t dropped (14.2 to 14.1) but the paraproteins are up by just over 1. Again… It’s not dramatically fast but the trend is clear.
The doc is to discuss Husband’s case at the next MDT. The plan is for him to have a CT and then probably chemo. I don’t know why they’re looking at Bendamustine and Rituximab again since the remission wasn’t that long last time but at least they’ll be hitting the cancer earlier in the decline this time so that may help. So many questions…
They still don’t know if it’s SMZL or WM and I don’t know if that matters.
It feels scary, that treatment options are becoming limited earlier than I’d feared. But I’m not sure that that’s the case. Good grief it would be nice if they could tell us which cancer it is and what they’re going to hit it with!
Doc says we should think about starting a new drug in October: “If Ibrutinib still has the brakes on, leave it, if the lymphoma is speeding up we need to change”. If the paraproteins are up by 2 or 3 and the haemaglobin is down to 13 we need to look at the next step eg Ibrutinib’s cousin Zanubrutinib – we don’t want the haemaglobin to go too low eg 8. That would be low!
Husband doesn’t quite know what cancer he has or what treatment he’s going to be facing but he’s carrying on with zero complaints. “I guess all things considered I’ve had a good run. I don’t really want it to end quite yet though.” That makes my heart ache.
We’re planning to go away. Husband didn’t want to pack in case we had to unpack. We told the doc that we’d work our trip around treatment but that if it’s ok right now we’d like to run away and find a beach and some pizza. “Run”, he said. So by God’s grace we are. To the beach, with our beloved dog. To find some pizza.
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