Regeneron treatment for CLL people with early Covid symptoms

[Twin21]

Hi,

Great community! Thanks to everyone who posts their experiences. It’s been comforting, informative and helpful.

This is my first post, and I’m not someone who is generally brave enough to post.

I wanted to ask if anyone with CLL who got Covid received Regeneron’s monoclonal antibodies early in the course of the disease, and if they did, what was the experience?

I live in Los Angeles, California (the epicenter of Covid at the moment) and my identical twin sister has CLL. Her CLL background is 13q, mutated, and was diagnosed at 46 years old in 2014 and was on W&W, until summer 2020 when she got AIHA (auto immune hemolytic anemia) which they treated successfully with Prednisone, Rituximab and Ibrutinib. She doesn’t have any co-morbidities but she has 2 teenagers (I’m not implying the teens are a co-morbidity :-)). Just that having kids during a pandemic is especially difficult while protecting a vulnerable person, and it is also very hard on the kids when socializing is so important to their development into adults.

My husband and I believe we contracted Covid on February 27, 2020 while in London. We went to a crowded private supper club with a bunch of international members in the heart of Mayfair and all 14 guests at our table got Covid. At the time, there were only 4 cases reported in the U.K. so we believed we were safe. While traveling we did wear N95 masks while at the airport and while flying. However, 5 days later when we landed in LA, my husband (68) began a fever of 101 and a dry cough. I got sick 4 days later after he got a fever. Our illness lasted a long time but never got into our lungs, and 2 weeks into our illness we thought maybe we have Covid. There were no Covid tests in Los Angeles at that time but a week later (3 weeks into our illness) our doctor said he had the test, and a week later we got the positive results. We were still not feeling back to normal 3 weeks into the symptoms. We wanted to keep testing until we got 2 negative results before we would leave the our house quarantine. It took us both 9 weeks to get 2 negative PCR Covid tests. Also, I never developed antibodies (tested 4 times, once a week with blood tests sent to LabCorp and other top labs and no antibodies) but my husband did have antibodies. We are survivors but I’m a “long hauler” it’s been almost a year and I still have mild trachea irritation, and feel the need to clear my throat.

I’m so relieved that we never let my sister or anyone get near us while we were sick. Because I had Covid and know how hard it is to clear it with my functioning immune system that I’m literally terrified of my twin sister catching it and doing poorly.

I would describe my Covid safety regime as militant with no compromise. If I hear of anyone in the family taking risks (husband of sister going surfing or kids having friends over for play dates - even though the friends get Covid tests prior to the visits) is unacceptable to me and I emphatically express my disapproval and reestablish the medical facts (onclive and medical journals describing the high mortality rate of CLL & Covid) to the family who are mentally fatigued from my constant badgering. They resent my attitude but they also know it comes from a place of love. I can’t imagine life without my sister and I will do anything to protect her. My husband and I are still quarantining (almost a year of no restaurants, no going inside any place, no housekeeper, grocery deliveries outside with everything sterilized by me, solely to set an example and to create a safe place for my sister and family to visit). Needless to say, I become a better cook and mediocre housekeeper.

We have a great medical team for my twin sister including Dr. Rick Furman who was an amazing comfort early on and who I respect and admire. We can’t express our gratitude enough for his professional generosity and his amazing support. Sean Fischer at Providence Hospital in Santa Monica is her Hemotologist Oncologist and Herbert Eradat at UCLA have both been incredible with their support, care and medical advice.

Apologies for the long winded post.

[lankisterguy Volunteer]

Hi Twin21, -

Yesterday my state (New Jersey) included everyone over 65 and immune compromised in the 1st group for getting vaccinations and instantly every one of our 58 vaccination centers had NO available appointments.

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However I also learned from Dr. Furman that Weil Cornell NY Presbyterian hospital has an adequate supply of Remdisivir, Bamlanivimab and Convelescent Plasma. If I have symptoms of COVID-19, all I need to do is call them and with 2 days notice, they will administer a Bamlanivimab infusion as an outpatient and send me home after a short observation for immune reactions. If I must be hospitalized for COVID-19 they will use remdesivir, dexamethasone, and convalescent plasma.

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You or she may want to contact your sister's CLL Expert doctor to see if they have the same arrangements available.

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Len

[Twin21 in reply to lankisterguy]

Thanks Len! Yesterday I learned the government opened up Covid vaccinations in LA to 65 and older and (I think) immune compromised. I went online and signed up my sister, my mom and dad and husband. The website crashed a few times due to the high volume but my persistence paid off even though the appointment times are a couple weeks out and none on the same day, but I’m relieved that I was able to get confirmed days and times for my family. I thought the first places to begin general Covid vaccinations would be hospitals but weirdly enough, it’s a grocery store chain called Ralph’s that has a pharmacy inside. I went to the Ralph’s website and found the Covid vaccine signup.

I have contacted several Hemotologist oncologists and regular physicians to see if Regeneron would be safe for sister if she contracted Covid and so far no one I contacted had any data. I read on Regeneron’s website that they don’t recommend their Covid monoclonal antibody treatment for immune compromised patients. It didn’t say why. Was it tried in a clinical trial with poor outcomes, or did they not test it on immune compromised so won’t recommend it? There is a limited supply so I’m concerned that if she did need it, the drug may not be available. We all dearly hope she will never need it. Her 1st dose Covid vaccination is a couple weeks away.... we will continue Covid safety protocols even after her second dose, but hopefully with less anxiety and fear.

I’m curious how CLL people felt after their second Covid vaccination dose. Did they get short lived flu symptoms? No symptoms?

[Jonquiljo in reply to Twin21]

Just curious, as I’m up in the Bay Area. I know California is OK for 65+ vaccinations, but no one around here seems to have a sign up for it. My county (Marin) is very lame in that they are still doing 1a — waiting to go to 1b (75+) and really waiting to go to 1C (65+). I guess they read them memo but dont care!

I’d go to a neighboring county, but I see no sign ups here either. I don’t understand why different areas of this state have such different programs!

[Twin21 in reply to Jonquiljo]

I just did a quick search and it looks like Marin is still holding back the vaccine.

coronavirus.marinhhs.org/va...

I found out about the online signup in LA via word of mouth. There was nothing posted or on the news.

[Jonquiljo in reply to Twin21]

I think the problem is that Marin has 25% 65+ people living here. Marin also has an ego the size of a large building

From what I’ve read, when Biden takes over he will implement a federally guided program for vaccination that will remove the small town element out of it. No more state and county local stuff — but rather well federally funded coordinated efforts to vaccinate as many people as possible.

I really am surprised that a month after these vaccines were approved — that so few of them have been actually injected into people. Then again, I guess I’m not surprised.

I bet monoclonal antibody infusions get far more utilized than they have been as well. We have large surpluses of these medicines and their production is increasing rapidly.

All this should not be as decided and implemented by one state or county vs another. We need to go to war with COVID.

[AndreaJo in reply to lankisterguy]

Len, my husband is a patient of Dr Allan, who works with Dr Furman at Weill Cornell. We asked him about the monoclonal antibody treatment in case of Covid infection, and he said he could administer it but it would take 48 hours to arrange. Plus we'd have to travel from New Hampshire to NYC which is a 5 hour trip each way. The 48 hour part baffles me. Why? Did Dr Furman indicate there would be such a delay in treatment? We have a zoom consult with my husband's local primary care provider today to see what can be obtained in our area.

[lankisterguy Volunteer in reply to AndreaJo]

Hi AndreaJo,-

It appears your information is correct, I just received this clarification from Dr. Furman

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"It only takes two days and is indicated for patients with symptoms that do not require hospitalization. We are currently using bamlanivimab for outpatients and remdesivir, dexamethasone, and convalescent plasma for inpatients."

Len

[Shepherd777]

My wife has CLL, but her Covid was not as severe as mine. She did not require hospitalization. I on the other hand have had a very rough go of it. I was infused with Regeneron on day nine when I was really bad and hoping to see early great results. As it turns out by day 9, it was too late for playing catch up so do not know how helpful it may have been. By day 12 with double pneumonia and ambulance picked me up and took me to a hospital for Rendismir to be administered, but they couldn't because again I was in too advanced a Covid state.

So my advice, set up the Rengeneron infusion logistics so that if you need it you get it ASAP and not in 2 or 3 days after a weekend. Mine fell between Christmas and New Years Eve not a good time to start making phone calls and appointments.

[Twin21 in reply to Shepherd777]

Good advice.

I hope you’re feeling better?

I ordered an oxygen concentrator just in case my sister or mom/dad contract Covid, do poorly, and no hospital beds remaining. LA has ordered 40 more freezer trucks for the overflow from the morgues. Brings tears to my eyes. I’m trying to be proactive. If my sister gets Covid, the plan is to immediately get the regeneron and convalescent plasma early on, and any other proven treatments.

I’m hoping to hear news from someone with CLL and Covid who got regeneron’s infusion. I’m hoping it helps people who get treatment early, before the disease progresses to the lungs. I’m so sorry you had a hard time with it and I’m so glad your wife did ok.

[Justasheet1 in reply to Twin21]

Here is a post from the Acor forum yesterday. I am hoping to get an update from the gentleman.

“Subject: Lilley mab infusion

I had the Lilley mab infusion yesterday morning 7 days after Covid

symptoms emerged.

The infusion and the 1 hour post infusion observation period were

uneventful. Went home about noon. Last night about 10:00 developed a

wicked headache, three degrees of fever and violent shaking chills. Off

to bed with 3 regular blankets and an electric blanket - essentially an

artificial fever. Shaking stopped in 30 minutes or so. Slowly shed

blankets through the night. Woke up this morning with normal temperature.

Small price to pay for my expected uneventful Covid recovery.

Bruce

CLL dx 1998

Tx BR 2015”

Jeff

[Twin21 in reply to Justasheet1]

Thank you. It sounds like the infusion helped. I hope you find him and get an update, and he’s feeling better.