CLL & Covid

[Tapps]

Sunday 06/12/22 CLL Unmutated

Had all shots and booster, plus Evusheld

Husband just now tested positive for Covid.

I’m in a panic, daughter lives with us

Just came back from a trip to Florida , now in Washington State?

Barbara

[gardening-girl]

Barbara, I'm confused about whether it is you or your husband that has CLL. If it is your husband with CLL who has tested positive for Covid, he needs to call his physician and get a prescription for Paxlovid. Also, if he is still on ibrutinib, he should stop taking ibrutinib for the 5 days that he is taking Paxlovid.

If you are the one with CLL and you test positive, then the same advice applies to you.

[Tapps in reply to gardening-girl]

My husband has CLL. He is on Ibrutinib. two years. Just today tested positive. I called “on call Dr. “ Will check in the morning!For now, he is in his bedroom. Not sharing a bathroom. Putting food out side his door.

I think he got it on our trip from Florida.

Pfizer two shots, plus two boosters. Plus : Evusheld shots. Masking on plane.

[Shiresboy]

Live in UK, had all covid shots and booster W&W since 2019, having bloods took today to see my antibody response, will post results.

[E-Lynn]

Paxlovid is more widely available now, and so is the possibility of getting COVID as people are traveling, eating (in restaurants and planes) and so unmasking with strangers. We have to remember the vaccines were created for Wuhan version of the virus and it has been mutating for several years, thus while the vaccine helps, it isn't what is really needed right now. There is talk of vax directed toward the Omicron variants. Let's hope that is available soon. Also, we must be aware that not a lot of testing results are being reported for data colection now. My understanding is the UK no longer provides free testing, so their stats aren't up to date and in the US most testing is done at home and there is no clear pipeline for reporting results to authorities thus the current numbers are way off. Our best way of getting rid of this is to stay cautious, not get it, and thus not spread it about.

[LeoPa]

Just make sure he's put on Paxlovid pronto. He'll be fine

[SeymourB]

Tapps -

If your husband's oncologist doesn't want to hold the Ibrutinib for 5 days so that your husband can get the 5 day Paxlovid, ask for Bebtelovimab infusion or the 3 day Remdesivir infusions. The sooner the better. Don't delay!

Look for a Nurse Hotline at a local hospital if your GP or oncologist don't know what Paxlovid, Bebtelovimab, or Remdesivir are. You can call a hospital's general switchboard number to ask for the hotline. If they have no hotline, ask for Infusion Therapy.

HHS has a therapeutics locator, though I find that some hospitals or pharmacies don't update their counts, and it doesn't show Remdesivir - which still works well even for Omicron variants:

covid-19-therapeutics-locat...

Paxlovid is stocked at local pharmacies. I got mine at Walgreens. Bebtelovimab and Remdesivir are stocked only at hospitals and clinics that do infusions.

In my opinion, don't bother with Molnupiravir - it's very weak against Omicron.

I caught COVID from my wife, who is an 8th grade teacher. She masks all the time, but probably got coughed on, and had an air leak in her KN94 adjustable mask. Sigh. I went to an Urgent Care associated with my hospital and oncology clinic.

I'm on watch and wait, but already had low total Ig's (below normal IgA, IgG, and IgM) several years ago. I didn't make a good response on the LLS Spike IgG tests - none to the first 2 Pfizers, barely positive after 3rd Pfixer at 4.7U/mL, and low after 4 shot (1/2 dose Moderna) at 85UmL. I got 2nd half dose of a split dose of Evusheld a week before I caught COVID.

My only drug conflict with Paxlovid was Tamsulosin (FlowMax), and I continued taking it while taking Paxlovid.

I had low fever (99.5F-102F 36.5C-39C) for several days, cough, and very stuffy sinuses. Amazingly, I wasn't very achey. I developed a secondary bacterial infection which turned out to be Staphylococcus Ludunensis, which I still have a month after first COVID symptoms. It has blocked both of my ears, so I am more deaf than usual. I'm taking Doxycycline for it, and have a followup with the ENT today.

I tested negative on Rapid Antigen the day after finishing Paxlovid, but 3 weeks after first symptoms, I tested positive on PCR. I mask everywhere I go, but I really don't go any place but the doctor.

I think we all need a plan for what to do when we inevitable get infected. A good reference that I used was:

cllsociety.org/covid-19-hom...

CLL Society's COVID-19 Action Plan

This is survivable!

Best of luck!

=seymour=

[Tapps in reply to SeymourB]

Doctor is holding Ibrutinib 7 days. Should I be worried about that?

As the Covid goes, he seems to be stable, I’ve been so stressed. CLL Unmutated. 80 years old.

I definitely was exposed! I’m in remission with Breast Cancer. Certainly didn’t need Covid.

Looks like Paxlovid is doing it’s job

[Tapps]

Tested Positive for Covid Sunday afternoon. Monday stopped Ibutinib, started Paxlovid started Monday evening. Tuesday evening, seems stable. Have Labs next Monday.

[Pin57]

Good news Tapps, way to go getting on Paxlovid quickly… now it’s recovery time n may it go very well for you !