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Calm before the Cytokine Storm?

Day +7

I’m boringly well, really well. Sorry there’s not a bit of drama – although I should be careful what I wish for.

I had a blood test, ECG and saw Con Tam today. He’s very happy with how things are going. Only had the temperature issue to report. He says if I’m going to get side effects it will be in the next 14 days but they’ve seen patients do well with no side effects too so I’m not to worry if I stay as well as I am. Next appointment not until Friday on Day 11 when I get to see Dr Michael Dickinson whose trial this is.

Just caught up with my friend Charlie in London again who recorded this for me if you want to see if I’m still able to string a sentence together or can even pronounce schaudenfreude correctly!

9 thoughts on “Calm before the Cytokine Storm?”

  1. Hey Deb – wonderful you feeling so well 👏 I missed seeing you today. I arrived about 5 minutes before my 3.40 appt and had just enough time to grap an espresso before my number came up. I said to Con that you were up next and he said ‘ I’ve already seen her’ . So, like ships that pass in the night …
    May everything be well with you❤️

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  5. Well – we spoke about obinutuzumab and venetoclax or maybe zanubrutinib if it gets the go ahead in Nov. Also found out today I’m unmutated – having found out at last appt that I’m notch mutated.
    But I had a long walk in the sun on the way back to the car and right now I’m feeling fine. It’s just a thin line between treat or not treat yet – esp with the risk of tumour lysis with V.
    Best wishes and 💕

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    1. Con is the man when it comes to zanubrutinib. Don’t worry about tumour lysis syndrome – I’ve not known it to be an issue for anyone since they did my protocol with Ob and Ven which became the standard of care. Great that you’re getting the option of these frontline! I did not enjoy having another round of chemo two weeks ago – reminded me how much it bothered me in 2013 when I was unmutated and knew it wasn’t going to be the best thing for me. I suppose for you it’s a choice of whether you want to be on a drug ongoing which I assume Zanu would be or if you want to hit it hard for a finite period with the opportunity of a treatment free remission – everyone on my trial of Ob and Ven in London got to no detectable disease for a significant period of time so I’m a big fan of it.

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