Know what you mean. I’m sure you can imagine the number of times I nearly sent various furious letters to my former haematologist! Maybe I should publish them, “Things I Wish My Blood Doctor Actually Knew” or some politely angry haiku comparing changing doctors to the dropping blossom that gets trodden into the ground or something.
So you’ll have a break from phlebotomy which will free up some time and be less gory. Never asked but I’m hoping you never came away from bloodlettings with bruised arms. My time before last left me with shocking inner elbow bruising which needed covering up as it looked like a different kind of needle mark
How do you feel about possibly starting ruxolitinib? It does sound like the most effective treatment if symptoms fit its diagnostic criteria, as in intolerance to hydroxyurea or neutropenia brought on by other treatments. If it’s not too much information right now, I took some notes about ruxolitinib here and here; “Ruxolitinib treatment is more effective at relieving fatigue and achieving overall benefits than hydroxyurea or interferon. It’s also better for complete response and event-free survival from thrombosis, haemorrhage, transformation (from one cancer to another), and death.”
But it sounds like your haematocrit is so close to the normal range! And your platelets too if I’m reading your numbers correctly. Great stuff! Those weekly bloodlettings seem to have helped, as they’re meant to. Have your specialists said that the aim is to bring you off phlebotomy altogether? I was surprised when my new doctor said that was the aim for me. I won’t grumble, it’s bloody expensive to have monthly phlebotomy here, and that’s when subsidised with Obamacare!
I think you’re wise to gauge how you’re doing by how you feel rather than simply comparing blood test results. I mean, one person’s great results can be terrifying for others. It’s all relative to our own experiences with living through this ourselves.
Now time to rest and don’t forget your savoury treat