Get Regeneron Today or Wait To Ask Oncologist ... - CLL Support

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Get Regeneron Today or Wait To Ask Oncologist Monday?

Palmetto profile image
25 Replies

It finally happened our daughter-in-law not vaccinated was here on Wednesday and Thursday she tested positive for Covid. Results in on Saturday. Question is I have made an appointment at a local site for my husband to have the Regeneron cocktail tomorrow because he was exposed to her standing side-by-side in the kitchen for at least several minutes I know it is still too early to be tested. Do you think I should wait to check with the doctor Monday or not take a chance and just have him go ahead and get the infusion? I'm not so worried about myself we have both been fully vaccinated but his was back in January and February with Pfizer but because he underwent treatment with Gazyva in May til September I highly doubt he got much protection Thanks in advance for input!

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Palmetto profile image
Palmetto
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25 Replies
Palmetto profile image
Palmetto

PS He also was treated in July and August 20 20 with Rituxan and one round of obinutuzumab. So even when he got the vaccine less chance of antibodies.

Jm954 profile image
Jm954Administrator

I would go today and if they feel it's not appropriate because he hasn't tested positive then they will not give it but at least you've got a chance.

Palmetto profile image
Palmetto in reply toJm954

thanks. have an appointment for 2 pm I think is prudent, In the US exposure of immunocompromised is approved..Thankfully we are 20 minutes from the one location in Miami. A real mess since she had double mastectomy only 6 weeks ago for stage 3 breast cancer and underwent extensive chemo. My son and our 23 month old grandson tested negative today but are now staying at a hotel. She is doing well with only mild symptoms.

ClassyLady3 profile image
ClassyLady3 in reply toPalmetto

😧😘💕

ViPOR profile image
ViPOR in reply toPalmetto

I am glad your daughter in law is doing well.She has been through so much she does not need COVID

Palmetto profile image
Palmetto in reply toViPOR

Thank you for your kind words in fact we were celebrating that day because she had developed a lesion on the breast that had the cancer in it and the plastic surgeon was afraid it was a new cancer and the surgeon saw her later and said it was not so it was a great relief she was afraid she was going to stage four and so afraid then the next day she woke up with Covid. Hopefully this is the last challenge. She starts radiation in a few weeks.

cajunjeff profile image
cajunjeff

I would do a risk analysis. Covid monoclonal antibodies (mabs) are available to us with Cll post covid exposure and pre covid positive test because it has been shown in clinical trials that our covid outcomes are better by starting therapy sooner. So in the analysis, there is a clear benefit to starting therapy.

That should be balanced with the risk of the therapy. Other than a manageable infusion reaction a few people get with covid mab infusions, I don’t think of the treatment itself as being terribly toxic or dangerous. I like the idea of getting a month or more worth of covid protection too.

It’s not a close call for me personally. I would take the mab infusion.

Palmetto profile image
Palmetto

Piece of cake. No wait. 4 injections one each arm two stomach took less than 10 minutes but have to wait 40 after. More worried about that. I went with him. Waiting now. Hope we don’t get exposed here.

Justasheet1 profile image
Justasheet1 in reply toPalmetto

Well played.

Smakwater profile image
Smakwater in reply toPalmetto

That's how ya do it!

JM

Edalv profile image
Edalv in reply toPalmetto

Good to hear your husband got the treatment well done. Now you may recommend your daughter in law to do the same, given her health history… 👍

Sojomama13 profile image
Sojomama13

Palmetto, I am very sorry that you and your husband are going through this. I made a plan with my CLL Specialist in the event of Covid exposure/infection, I am on a clinical trial of Acalabrutinib, Obinutuzumab and Venetoclax. I was told that I had a 96 hour window to get therapeutics in order to experience optimum effect. I would get I.

in touch with your CLL Specialist ASAP and let them drive the process. Wishing you both the best possible outcome.

Sandy

HopeME profile image
HopeME in reply toSojomama13

Hi Sandy

Palmetto was able to get her husband the regeneron cocktail via SC injections at one of the Florida centers. I’m curious, did the daughter in law receive them, too? Was there a reason the daughter in law didn’t get the vaccinations given her medical history?

Thanks

Mark

Big_Dee profile image
Big_Dee in reply toHopeME

Hello HopeME

Good question.

Sojomama13 profile image
Sojomama13 in reply toHopeME

Mark, I don’t know the answer to that question. I, unfortunately, know a number of fully vaccinated people who did contract Covid. Most are asymptomatic or very mild symptoms, although one spent a few days in the hospital, scary. I am unclear if it was a break through infection or if it was something else.

Sandy

Palmetto profile image
Palmetto in reply toHopeME

Unfortunately she would not go against my sons wishes he had Covid last year with very little effect and is opposed to the vaccines I have done my best but I cannot convince them to do it but she was thinking about doing it without telling him but as you can see it was too late. Her primary doctor told her just to take Tylenol and get lots of rest and fluids so far she’s doing very well and the fever has gotten down to the 99 level without Tylenol she seems to have no trouble breathing. I don’t know what to do because we really need to help with our grandson and we cannot get a 23-month-old to keep on a mask.

fishnman profile image
fishnman in reply toPalmetto

She needs to find a physician who will actually treat her asap.

Palmetto profile image
Palmetto in reply tofishnman

She got Regeneron today and I found out the doctor told her Thursday to go but she didn't do it so he did give her the right advice she just didn't take it. She waited until after Saturday when she got the call from the health department.

SofiaDeo profile image
SofiaDeo in reply toPalmetto

Get her a pulse oximeter, so she would know to go to the hospital even if she felt OK. This inability to feel dropping oxygen levels is one of the scarier aspects of Covid IMO. By the time one "feels" the effects of oxygen deprivation, extensive damage can occur.

Palmetto profile image
Palmetto in reply toSofiaDeo

Thanks Sofia she has one and is staying 97 to 98 per cent :)

Analeese profile image
Analeese

I tested positive for covid on October 5th and got regeneron on the same day. I was exposed two days before from a family member as well from out of town. I still had all the symptoms and felt pretty bad. I am grateful I was able to get it. My vaccines were in March and April. As I am in treatment I did not expect any results from the vaccine. I was told I could not get the booster for three months.

PalmettoMiami profile image
PalmettoMiami in reply toAnaleese

Analeese so glad you made it through! I think we may be out of the woods since our exposure was a week ago today and it seems most people are coming down sooner. I am more concerned about being in the room where the Regeneron was administered and having to wait 20 minutes after for reaction that we may have been exposed there. Today is 3 days after so fingers crossed. Especially knowing that a majority if not all of the people there actually had covid and we were breathing the air in the building even if wearing 2 masks. I hope you continue to recover well. Thank you.

Analeese profile image
Analeese in reply toPalmettoMiami

I was very lucky because I went into the building with my daughter and so we were in a room together with no other people. The same way with the recovery area where we had to sit and wait until they told us we could leave it was just myself my daughter and my son-in-law. I certainly understand your concern as I was in the emergency room last Sunday and only a curtain between me and another patient. That patient left and they brought another one in right past me as well as giving them an x-ray when I was just on the other side of the curtain. We always have so much to be concerned about and I to worry quite a bit.

Palmetto profile image
Palmetto in reply toAnaleese

It has been a week now so all good. She still tested positive on Friday but feels much better. If I knew I could get it and do as well as she did I would probably want to lead a more normal life but no one really knows until it happens to them. She lost 10 pounds and was happy about that. Stay safe.

Palmetto profile image
Palmetto

Update. So far no covid Had Regeneron..Daughterin law tested negative today after Regeneron infusion Monday. It is obviously is a game changer. There may be an end of the tunnel.

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