We still haven’t been told anything about Waldenstrom’s. I Google. I do too much of that. Symptoms include headaches, nosebleeds, anaemia and low platelets. Sounds familiar. Also occasionally eczema-like skin lesions.
I know that many things which can suggest cancer are usually not – headaches, nosebleeds, fatigue and surely eczema! But if the docs don’t tell us what to look for it’s hard to know what to tell them. We have to monitor things ourselves for up to 3 months at a time. We didn’t think it worth telling them about Husband feeling like he was pumping sludge around his body. It seemed like a crazy vague thing to mention but it was critical in that the haematologist immediately tested for paraproteins.
His skin concerns me. It’s flaring up again. We plaster his back and legs with almond oil and E45 in the evening but by morning it’s often red and dry again. The GP says it’s eczema and they should know. But I can’t help wondering why it should crop up now when he’s never had a hint of such problems before. Husband feels that even if it isn’t a direct result of the cancer it may be related indirectly due to reduced blood flow through the skin or something. Of course we could be wrong but our gut feeling is that somehow the rash / oval patches of reddish brown ‘eczema’ have something to do with the cancer, or are a reaction to it somehow. Right now his body looks poorly, rather under siege, although he feels fine.
He’s been gardening and walking the dog daily and says he feels pretty good. I do wonder if he’s overdoing it a bit. He needs a sleep every afternoon and he does look tired. But then he’s on chemo. Of course he’s tired.
We mention his skin (again) at the 2 week check. Dr Inscrutable is clearly listening but he seems sure that it’s a skin condition unrelated to the lymphoma.
He does give us a little more information about WM. It’s similar to Marginal Zone Lymphoma, “with a relapsing and remitting course, the same sort of treatment and outcomes.” He’s pleased with current progress and tell us that the paraproteins may continue to go down for a bit after the chemo finishes. He explains that the paraproteins are unlikely to disappear but that we can hope for a level of 6 or so after treatment. He leaves us with a note of encouragement, “There’s no doubt you’re responding to treatment” but wrecks it slightly by finishing with “the only question is for how long”.