It’s been a while since we were in the hospital waiting room but here we are. It’s so busy that we’re in an overflow waiting area but it has an open window so we sit next to it in our masks, looking out onto ‘the world without cancer’. We wait for over an hour but had expected it to be much longer. We have no idea what to expect so dumbly follow the doc.
Husband’s blood numbers are not bad at all but they have gone in the wrong direction again, with the haemoglobin down from 131 to 124 and the platelets down from 307 to 287 but it’s too soon to have the protein results.
“Your case was discussed at the MDT and the decision is Ibrutinib”. Wow. Husband had been gearing himself up for a possible stem cell transplant so this feels like good news but we’re feeling a bit lost.
“Did they say which lymphoma I have?” asks Husband. “We’re calling you Waldenstrom’s for now”, the doc says cheerily, explaining that Waldenstroms and Splenic Marginal Zone lymphoma are not radically different. Apparently they look different on the surface and there are minor differences on tests but they are “two manifestations of one thing”. Husband’s Waldenstrom’s seems to have begun atypically but is now behaving more typically.
The doc is in confident business-like mode. There are other non transplant treatments if Ibrutinib fails to work or when it stops working or Husband no longer tolerates it. A stem cell transplant is still an option but it’s not generally used in Waldenstrom’s. The doc explains that Ibrutinib doesn’t strip out the existing paraproteins but it stops production so it could take 2-3 months or longer to see the protein levels coming down.
The doc goes through the consent form, noting potential side effects but warning that targeted drugs like Ibrutinib can cause “off target” problems unpredictably anywhere in the system. We are given the number for a 24/7 patient helpline in case something odd happens in the middle of the night and we need answers. Our heads are spinning a bit after pages of potential side effects but the doc reassures us that the drug is well tolerated by most people.
So we have a plan: Ibrutinib tablets will be delivered to Husband at home and he is to see the docs 2 weeks after he starts taking them. He may have any one of a series of side effects, he may not. He may have to go to A and E “if something dramatic happens” but that’s not likely.
We ask the day to day questions:
Can Husband have a glass of wine in the evening? Yes.
Does he have to be careful in the sun? Yes. Anyone who has had chemo needs to be careful, anyone taking Ibrutinib also needs to be careful in the sun – factor 15, cover up where possible, but get outdoors and enjoy life.
Covid booster – have it as soon as it’s due but Ibrutinib tends to work against it working well. Get the booster anyway.
If he gets Covid should he continue with Ibrutinib? Yes as long as feels okay.
Husband has to avoid grapefruit and seville oranges. “Does this mean that I can’t have marmalade?” “I don’t know. Ask the pharmacist”.
And that’s it. We leave with an encouraging smile from the doc, a sheaf of papers and hearts palpitating a bit with nervous excitement.