Covid positive

[celticfan]

Tested positive for Covid Friday due to flu symptoms. On watch and wait two years bloodwork stable. Doctor wants to send me for mono clonal antibodies treatment tomorrow and I am not sure whether to do it? Is there a downside to this treatment? I thought I could just ride out the Covid symptoms

John

[lankisterguy Volunteer]

Hi celticfan,

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We have lots of data that says trying to "ride out the symptoms" is not wise for CLL patients. And once you are infected with COVID, the monoclonal antibodies or the antivirals are the best way to avoid hospitalization and dying from the symptoms.

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Len

[celticfan in reply to lankisterguy]

Thanks so much for the reply. I think the monoclonal antibody recommended was newer and the fact sheet they gave me stated it was experimental. I trust this site so wanted to make sure I asked John

[AnneHill]

I have read several posts and the monoclonal antibodies are helping cll patients. I will be going as quickly as possible if I get covid.It is risky and you may be sorry you didnt accept this life saver, Anne uk

[celticfan in reply to AnneHill]

Thanks so much. I value the opinions hereJohn

[celticfan in reply to AnneHill]

The name of the monoclonal antibody is Bebtelovimab. I live inSeattle Washington

[HopeME in reply to celticfan]

Listen to what your CLL doctor recommends. Maybe you’d ride it out without monoclonal antibodies but maybe you wouldn’t. Why take that risk? We already have the deck stacked against us.

Good luck.

Mark

[celticfan in reply to HopeME]

Thanks for the reminder. I have a good consensus now and will go to the appointment tomorrow to get it. Cheers John

[bkoffman CLL CURE Hero]

Covid is not your friend and is not predictable. If you nab a mAb that is active against the prevalent strain locally, do it.

[bkoffman CLL CURE Hero]

Bebtelovimab is active against all the variants. The sooner you get it the better. You are lucky to have access.

[celticfan in reply to bkoffman]

Thanks for sharing that information I didn’t know that

[AnneHill in reply to celticfan]

Good luck. I hope you dont suffer too much. Anne uk

[very]

My husband had the the infusion,no side effects and is fit as a flea.I had COVID at the same time and 2wks on still suffering .dso I think it's definitely the way Two go.Jenny uk

[celticfan in reply to very]

That’s encouraging to hear. Thanks

[SingingBirds8 in reply to celticfan]

Hi celticfan I agree with everyone’s advice. I have covid and was wondering what to do came on here and now I will call my oncologist. My primary never returned my call. I took the test Saturday morning. I’m disappointed. Good luck!!!!

[Poodle2]

I had a different infusion (Sotrovimab) and I didn't think twice. Had no side effects, felt better almost immediately (next day) but still had "cold like symptoms" for three weeks ...so I would take it. Good luck with your recovery 🙏🏻

[AnneHill in reply to Poodle2]

I am being careful but the thought of a treatment is filling me with confidence. I may be wrong but I feel better mentally.Anne uk

[E-Lynn]

You are lucky it was offered. Thank whomever did that and go for it !! Wishing you all the best.

[SingingBirds8]

Well I called my oncologist and he said if I feel worse go the the ER? Not encouraging words. Hopefully I won’t feel worse. Ugh sorry to complain

[wizzard166]

Hey Celtic Fan

You can ride it out if you want to do so; on the other hand, you can take advantage of your good luck in having Monoclonal Antibody Infusions being made available to you. That's free will.

I believe in getting the odds as much in my favor as is possible, especially if my life is at stake, so I've now had Monoclonal Antibody Infusions twice. First time last December when I was exposed to a two year old who got sick and tested positive for Covid. The second time I began to have symptoms first week this February, did a home test that was Positive, and got another Infusion. The first time I never had symptoms or was tested by the time I got the Infusion. I told the Nurse in the special section of the ER who Triages requests, that I was a CLL patient. She said don't bother testing; you are at a high risk and no need to take chances. God bless her. Then in February their rules had changed to me either testing positive or showing symptoms, but in that instance I already had symptoms when I called them.

These latest strains of Covid have not hospitalized or caused deaths in high percentage amounts, as did the earlier strains. That doesn't mean however that for people like us with low immune system responses we should take unnecessary chances. Then again maybe you like to gamble, as I have done on occasion, but losing a bet on the Celtics isn't as dangerous as hospitalization with Covid. Keep in mind that they will not offer the infusion if you are ten days or more post symptoms.

Carl

[Palmetto]

Sorry this happened, may I ask you how much exposure you have on a day to day basis to the public? Are you still going to work? Do you have any idea where you may have been exposed? Just wrapping my mind around how so many even here are coming down with Covid these days. I think my husband and I shelter too much! We don't go into stores, have gone 3 or 4 times to an outdoor waterfront restaurant but other than my husband's lab visits or doctor visits we don't go out. Are there family members who live with you who interact with the public and don't wear masks? Now that the masks on airplanes has lifted there go my hopes of finally visiting my son and grandchild as I don't feel safe with only me wearing the mask. Hope you fare well.

[celticfan in reply to Palmetto]

My Daughter got Covid first and then I got it from her. It turns out I didn’t get the monoclonal antibodies after all as they were not available at the clinic I was referred to

[CLLerinOz Administrator Volunteer in reply to celticfan]

The trackers in our pinned post may still help you source treatments in your area:

healthunlocked.com/cllsuppo...

Using one of them, created by Rob Relyea and based on government data, you can identify where supplies of bebtelovimab (and other treatments) are in Seattle. Here's the link to the current supplies of bebtelovimab there:

rrelyea.github.io/bebtelovi...

Good luck finding something. I hope you are still within the treatment window of time.

[celticfan in reply to CLLerinOz]

Thanks I was told I could go to the ER but I was not guaranteed I would receive it so choose not to as I’m getting better

[Palmetto in reply to celticfan]

Please go sometimes it starts out and then takes a turn. Better safe than sorry. I wish you well.

[AussieNeil Administrator in reply to Palmetto]

Celticfan, Palmetto is right. You need to be proactive. I hope that you are at least monitoring your blood oxygen content. One of the hallmarks of COVID-19 infections recognised early on, is that patients can feel quite well, while having O2 saturation levels as low as 70%! When the impact of the illness finally hits, it can hit surprisingly hard, making recovery very difficult.

Neil

[Pin57]

Another… Get the MABs! reply.

You’ll be glad 😀 you did!