Hi all, I’m thankful for this community, I’m a long time reader, I don’t comment often but I need some advice tonight.
My mom was diagnosed with CLL in Spring 2019. She is on ibrutinib and her lymphocytes have come down from 711 (!) in May 2019 to 98 a few months ago at her last appointment.
She developed symptoms Sunday morning (12/19) and tested positive with a rapid home test this evening. She plans to call her oncologist first thing in the morning. What all have you experienced with COVID and CLL?
Monoclonal antibody therapy with CLL and ibrutinib…any insights?
I appreciate any advice!
Written by
DaughterofCLLfighter
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I am not a medical practitioner, so please seek professional help asap. Call the hospital and let them know your mom has CLL and is immune compromised. Most medical folks know very little about CLL, so it's important to insist that she get the mAbs. (This isn't a "wait and see how she feels in the morning" thing. Act quickly!)
If you have an oxygen sensor, please use it, also take her temp. Here's a link on how to monitor oxygen level: www1.nyc.gov/assets/doh/dow...
Thank you so much for the information. She is scheduled for the monoclonal antibody infusion Thursday morning at 9:30. It’s the soonest they could get her in. It will be day 5.
She is feeling pretty good. Cough is better, fever seems to be staying very low grade (99ish), and her O2 sats are 97-98% consistently.
I’m on watch and monitor but I did have Covid last December. It lasted about 3 weeks with moderate symptoms. Headache, mild fever,body aches. I took (per my Dr) Zinc 60 mg, vitamin D, vitamin c1000 mg, Advil. I would have your moms Dr tell her what would be ok for her to take because she’s being treated.
Hi John, CLLers on W&W have much better chances with the vaccine. CLLers on Ibrutinib do not. It inhibits vaccine efficacy. So your situation is very different.
I agree and understand that’s why I started my post with , I’m on watch and monitor, and ended by saying have your mom check with her Dr because she’s being treated.
Hi neurodervishIt's still possible to get a response on ibrutinib its just less likely the figures were around around about 13 to 15 percent so it's a lot less likely but not impossible , sorry just thought I would point that out
I see that you are in the US. You should consider pushing to get your mother a regeneron infusion today. many doctors are ignorant about how monoclonal antibodies work and why people with cll need them.
Your mother clearly qualifies under the emergency use authorization to get regeneron. Her cll doctor can prescribe it, her regular dr or a dr at a walk in clinic.
I am not a doctor and and not competent to give medical advice. I do think that most any dr who understands cll and covid would say get the mab infusion now and not wait to see how she does.
I'm no expert about Ibrutinib, but have read that many CLL specialists pause the daily dose in order to give CLLers a better chance with the vaccine. (Not the question you asked, but possibly related...? ) Maybe cajunjeff can weigh in here.
I'm more concerned that your mom has to wait until Thursday to get the mAbs. CLLers should rcv mAbs immediately after exposure to Covid, and not wait this long after positive diagnosis. Several people here have mentioned that most medical staff don't know much about CLL and that we have to be adamant in pushing to the front of the line to get mAbs. Does your mom have a CLL specialist who can advocate on her behalf?
Yes, she has an oncologist, but was told the mAbs are “hard to get at Cleveland Clinic” she is getting them Thursday morning at another local hospital, it was their first available appointment. NE Ohio is having a huge surge right now. Her symptoms have remained mild.
My main concern is why we are stopping the ibrutinib, when the LLS and studies on hematology.org say to continue BTKi even if Covid positive.
If it has to do with receiving the mAbs I guess that’s one thing, but just telling her to stop taking it seems like not the most up to date advice based on recent studies
Sorry to quibble at a time like this, but an oncologist is not necessarily a CLL specialist. And this is definitely a question for a CLL specialist. Cleveland Clinic has many oncologists, but (to my knowledge) Brian T. Hill, MD, PhD is the only CLL specialist there. Maybe there is a new CLL specialist there?
One more thing DaughterofCLLfighter , Do you know if they've sequenced which variant your mom has? If it turns out to be omicron, strovimab is the mAb that has been shown to work against it (so far). I realize we're all beggars and not choosers at this point, but wanted to let you know about that, in case it's an option.
I don’t think the answer to this is well known. Ibrutinib is an immunosuppressive drug, meaning that in wiping out our bad lymphocytes ibrutinib can diminish our healthy lymphocytes as well. Intuitively, you would think stopping ibrutinib would be wise.
Covid has a knack for making immune systems go haywire. What often kills people with Covid is a hyperactive immune response called a cytokine storm. Ibrutinb might do a good job in preventing a cytokine storm, it’s used in Car T cell therapy for that purpose.
So there is a case for staying on ibrutinib and a case for getting off it. This is a question for your Cll doctor. The problem is that I bet if you ask a lot of Cll doctors this question, you might get different answers.
My mom who was diagnosed CLL 3 yeRs ago I had covid in September.She. Was able to call herMD and get monoclonal antibodies. Depending on where you are some states don’t require MD order while others do. The hardest part is waiting to hear back from infusion center once you have phoned- it seems to take forever!
Not to worry about stopping ibrutinib for a short time . It is very common to stop for a week or so when needed for a procedure w/o losing any benefit. I stopped 3 days before and resumed 3 days after a heart cath. Ask the oncologist if doing so would help to avoid suppressing the antibody response.
Given it takes up to a couple of weeks for the B-lymphocytes to mature into plasma cell antibody factories, I suspect you'd need a longer ibrutinib holiday of around 3 weeks.
Oh my! Thanks for clarity. Didn’t mean to suggest using the time frame I used for my situation. That’s why I said to ask the oncologist. Sorry to have mislead.
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