Good experience with Regeneron infusion

[louie48]

Happy New Year to everyone. One week ago (last Saturday) I noticed I had no taste and no smell. I knew right away it had to be Covid. I called my Family Doctor and my Oncologist. Both said to wait until Monday as long as no major symptoms showed up. I ran a 99.5* temperature all weekend. Monday my Oncologist told me to go to my local Hospital ER and get the "fast result" Covid test. I did-it was positive-the ER Doctor told me my Oncologist had signed off on the Regeneron cocktail infusion. It took 1 hour for the Pharmacy to prepare, 1 hour for the infusion, and another 1 hour for observation. All went well. Once I got home I got the chills and had a 104* temperature. It only lasted 30 minutes and my temperature slowly returned to normal. I have had a normal temperature all week and no other symptoms. My O2 stays at 95% or above and my lungs are clear. I live in the DFW part of Texas and from what I read, these antibody infusions are now widely available to those CLLers who have tested positive for Covid and get their Doctor to request the infusion.

Stay well everyone and God Bless. I'll let ya'll know if anything changes,

[Justasheet1]

Lou,

Your reaction was exactly the same as another Cll patient that I posted about.

“ 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”

Keep us posted and congrats and be well.

Jeff

[Twin21]

That’s great news! Just curious about your CLL stage, are you W&W, had treatment, are currently on treatment? Thanks so much for posting your experience.

[louie48 in reply to Twin21]

Hey Twin21, I was diagnosed 2011, BR 10/16 to 2/17. Symptom free at present

[WinJ3]

Happy to hear you were able to get the Regeneron infusion and you are doing much better 🙏🏻🙏🏻

Win

[louie48 in reply to WinJ3]

Hey WinJ3, I just want all my fellow CLLers to know that as of last week the Regeneron cocktail is supposed to be WIDELY available. If you get the Covid be sure to ASK your doctor for the Regeneron.

[nvp815]

That is great news Louie. Happy to hear your doctor acted quickly with the Regeneron and that it worked!! Hope you continue to recover from Covid uneventfully.Nan

[louie48 in reply to nvp815]

THX

[Poodle2]

I'm so happy that you managed to get this treatment❤

Why is this not available in the UK?

Why are our doctors not making recommendations for a trial for this?

Why are people with CLL and covid in the UK treated like they have been forgotten?

It makes me so sad and angry that it could be so easily preventable to start feeling really sick and no one cares?

Anything that could be done to change this?

[Zia2 in reply to Poodle2]

It isnt availble in my town in the midwest USA. I already asked

[louie48 in reply to Zia2]

Zia2, maybe you will have to go to a big city, but as I've mentioned there is supposed to be a lot of Regeneron available.

[Jm954 Administrator in reply to Poodle2]

Regeneron has been available in NHS since September 2020 as part of the covid RECOVERY trial in the 176 hospitals taking part. Sadly it doesn't seem to be available very early in the disease as this member describes and it appears that is when it would be most useful.recoverytrial.net

I've seen reports of safety concerns and, I think this is in the USA but may be European, "Regeneron halted the enrolment of severely ill patients in COVID-19 antibody trialTrial based on expert recommendations. According to Regeneron, the independent data monitoring committee (IDMC) for the REGN-COV2 antibody cocktail COVID-19 treatment trials recommended that the current hospitalised patient study be modified. In particular, the IDMC recommended halting further enrolment of patients requiring high-flow oxygen or mechanical ventilations after identifying potential ‘safety signals’ as well as an ‘unfavourable risk/benefit profile’. Despite this enrolment pause, the IDMC also recommended continuing enrolment of hospitalised patients requiring no or low-flow oxygen, as the risk-benefit profile remains acceptable in this cohort."

Jackie

[Zia2]

So happy for you. Congrats. You must be so relieved.

[GMa27]

🙏💪🙏

[kimiD]

Hi Louie- May I ask the name of your oncologist and where he practices?

[louie48 in reply to kimiD]

kimiD, I use Dr. Allada at Texas Oncology-Irving.

[Cfarrar]

Hi how have you been since last year when you got covid? Any long lasting effects? Loved reading your story!