Each visit to the hospital feels like another piece of the jigsaw puzzle gets filled in. It still feels weird that Husband is being treated even though his haemoglobin and platelets are much higher than they were when he needed treatment last time. He felt well before they started this chemo apart from some breathlessness when exercising and the weird sensation of pumping sludge through his veins. We both knew that ‘something wasn’t right’ on holiday in the autumn but we really didn’t expect that something to need immediate chemo.
Why are they talking about paraproteins and if they’re important why didn’t we hear about them when Husband was first diagnosed with lymphoma?
So we pluck up courage to ask what the proteins mean. “We think you have Waldenstrom’s or Waldenstrom Macroglobulinemia”. It’s another rare indolent lymphoma and the paraproteins are a marker for disease activity. So Husband has two rare blood cancers? “Yes. It’s likely to be a new thing, an independent process.”
We try to digest this. We’d assumed up to this point that the SMZL had come out of remission rather than the start of a new cancer. Crikey.
The doc explains that the protein level is a marker of response to treatment. The bone marrow ‘production line’ is a finite space so if it over produces protein there’s less production of red cells and platelets. If the paraproteins are going up and the red cells and platelets are coming down that’s an indication of increased disease activity.
The plan is to hit the WM with Bendamustine and get the protein levels down. “You may plateau at 10 or 15. We want it to go as low as possible but how the patient feels is the most important thing even if we want better numbers.”
We’re not sure if we should feel relieved that this is a new cancer so the remission for the SMZL hasn’t ‘failed’ or if we should be scared that he now has two cancers to deal with. Of course it makes no difference – the cancers are there and treatments and prognoses are very similar. As laymen we have to conclude that there’s something very wrong with Husband’s bone marrow to keep churning out cancerous cells. We also choose to be happy that the chemo put him in remission for the SMZL and we can hope it will do the same for the WM.