CLL husband just tested positive - now what?

[OaktownA]

Husband just tested positive for COVID this eve, but his oncologist not responding...sotrovimab? Bebtelovimab? Paxlovid? Not sure what we should be seeking out. He did have the full dose of Evusheld in late Feb. But we know that his oncologist responds best when given explicit direction - ie, when we send a link to the order for an injection, etc. But also, not sure what we should be asking for...bebtelovimab is a newly EA MAB for those at high risk for disease progression. Paxlovid is working like a charm for people we know who've taken it, but since my husband is on Calquence it would be great to avoid having to stop and start the BTK-inhibitor. And it seems like any treatment needs to happen ASAP after testing positive.

He has had a headache today and yesterday, no fever, no other symptoms. Two positive tests this evening. We live in Oakland, CA. Tips? Advice?

[Jm954 Administrator]

Bebtelovimab is highly effective for the new Omincron B2 variant and that would be my preference as soon as I could get it. I don't think he would need to stop his Calquence but check with his oncologist.Jackie

[bennevisplace in reply to Jm954]

Others have endorsed bebtelovimab but I've yet to see independent evidence of its efficacy v BA.2. Do you have a reference?

[Jm954 Administrator in reply to bennevisplace]

No, only anecdotal evidence and endorsement by Dr Furmin

[bennevisplace in reply to Jm954]

OK thanks.

[OaktownA in reply to Jm954]

Oncologist def recommended it. Got it, no trouble (see my reply to Lankisterguy below).

[lankisterguy Volunteer]

Here is a long list of links for reading about bebtelovimab

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Recommended treatments by NIH: covid19treatmentguidelines....

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Update on bebtelovimab use and dosage

fda.gov/news-events/press-a...

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aspr.hhs.gov/COVID-19/Thera...

precisionvaccinations.com/v...

reference.medscape.com/drug...

mayoclinic.org/drugs-supple...

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Len

COVID recommended therapies Paxlovid & bebtelovimab

[lankisterguy Volunteer]

Below is a screenshot of locations with Bebtelovimab in your area (zip 945xxx to 946xxx) that I found at :

healthdata.gov/Health/COVID...

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Len

Bebtelovimab available in Oakland CA

[Jm954 Administrator in reply to lankisterguy]

That's brilliant Len

[Claybuster in reply to lankisterguy]

Can you do a screen shot for Pennsylvania and Ohio? Thanks

[lankisterguy Volunteer in reply to Claybuster]

Use the link healthdata.gov/Health/COVID...

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then set the filters you want - look at the screen shot above and see the far right edge where I entered the filter conditions.

(zip codes within driving distance of your location would probably better than states names, since Pennsylvania and Ohio would give you all the locations in both states- way too many for a screen shot)

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It's not hard to figure out how to filter it down to a useable list.

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Len

[OaktownA in reply to lankisterguy]

Thanks so much for this resource, which I hope will help others, too! I had actually found the B-mab within 30 mins of him testing positive - we're familiar faces at a local infusion center, unfortunately - and just wasn't sure if others had heard it was the best option or not. And turns out, Sotrovimab is no longer the choice. We didn't have any trouble getting him the B-mab, as at this center one can self-refer. We feel pretty darn lucky, as I know others - even those in our area - don't have the same experience. And so grateful for all those, like you, who jumped in to offer help!

[Claybuster]

I also just got diagnosed with covid after no covid for 25 months! Local health system giving me the run around. AHN. First saying they have beblitovibmab. Then saying they don't. I am making the 4 hour drive from Pittsburgh to Ohio State to get it!

[OaktownA in reply to Claybuster]

Good! It seems clear that CLL patients have to take matters into their own hands when something "special" is needed. Wish that weren't the case...it shouldn't be...