Question about Dexamethasone with O&V

[Greenbunnies]

Hi everyone,

I was diagnosed in Jan 23 and started Obinutuzumab 3 weeks ago - will additionally be starting Venetoclax later this week.

My WBC was 32 before starting O and nearly immediately reduced to 2.5 - 5. But neutrophils have been an ongoing concern. I was profoundly neutropenic (ie 0.0) at time of diagnosis. 2/3 weeks of Prednisolone did nothing for the neutrophils, but pushed my WBC up to 170! So they reduced the Pred and 1 or 2 days before it was stopped completely my neutrophils spontaneously shot up to 12 ...

I started O infusions, alongisde Dexamethasone as a pre-med a relatively high dose of 20 mg (for context, I'm a very small woman!). Following each infusion my neutrophils have dipped again to 0.6 with need for G-CSF to get up to normal levels. Haemoglobin has been hovering between 70-110 throughout.

So, my question is about the Dex. Is it helping or harming? I am not entirely clear why my consultant insists it is needed with every single O infusion, given I haven't had any reactions to the last two. She is saying its because I had auto-immune neutropenia. This doesn't make much sense to me given the results of steroids so far (as above).

I'm aware high dose steroids have side effects and personally I hate the insomnia etc.

Any thoughts?

[lankisterguy Volunteer]

Hi Greebunnies,

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I agree with Spark_Plug , your doctor has about 14 years of medical training which most of us lack. But since we have a large investment in the outcomes, we usually ask our doctors to work with us and be honest and sincere about what is known clearly and what is vague about our treatments.

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I believe that adjusting the amount of steroids and reducing the doses is something that is done gradually, so perhaps you could suggest reducing the steroid dose for your next infusion. If there is no strong infusion reaction, you may be able to keep reducing for each infusion.

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Your ALC ( now nearly all of your current WBC) will likely go down as the Obin eliminates more CLL cells, and when you start Venetoclax your ALC may drop dramatically, and possibly the ANC / Neutrophils may crash again during the Venetoclax ramp up.

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Len

[Greenbunnies in reply to lankisterguy]

Thanks both - very helpful!

My consultant is going to skip the steroids for my next infusion, but has said we need to keep the option of daily steroid tablets open in the coming months as that can be very helpful in managing neutropenia . That made sense to me.