I had an experience over these last three days that I wanted to share with our group. It was a scare about possibly having COVID, and what it taught me with regards to preperation for an event that actually was COVID.
I've been letting my Son, Wife, and three kids ages 11,9,7 stay at my house, while in between one he sold and finding the next one. We also have a 17 year old Grandson, whom we adopted ten years ago, living with us. Three days ago on the 14th one of my Son's three kids and also our adopted Grandson developed a Sore Throat and related symptoms. A day later I had a mild sore throat, but mainly a head cold. None of us were immediately tested, and I decided to see how the throat and cold played out. Two days ago on the 15th the throat was milder but the cold became pretty heavy, but my temperature was normal. I went for the COVID test at a Walgreens, and realized I didnt know who to call if it turned out positive.
I had heard prior to this, from my Immunologist, that Boca Raton Regional Hospital had the supplies for Regeneron Infusions, so I called the ER and asked who to talk to for that service. They told me a section of the ER with Nurse Practitioners and doctors oversees that program, and gave me the phone number to reach the Nurses. I called and she discussed my situation and offered to schedule me for 2pm the next day. She said if the COVID test came back Positive to keep the appointment; however, if it came back in time before the appt Negative to cancel. I got the result this Morning and it was Negative, so I called and cancelled.
My advice to all of you is to find the local hospital that offers the infusions, call and find out what phone number you call if you need an infusion, and what hours they are receiving phone calls, etc. It is wise to be prepared.
The Nurse also told me that there is a ten day window to be permitted the infusion. You must be infused within ten days of first symptoms. She also said that getting infused within the first five days is a big key to success. I also found out that if you got too sick, or your Oxygen level went to 94 or below, you would be denied the infusions. So stay on top of things, don't delay if you have symptoms or get a positive COVID test result, or you have been exposed to someone who is COVID test positive or actually sick with COVID.
Carl
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wizzard166
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Thank you for the explanation of how you got your plan and what the plan is. I will be contacting local hospital with those questions and hope they are able to take the time to instruct with the reported cases being so high.
Excellent advice, Carl. These monoclonal infusions do not just “happen.” You have to make them happen. Just because you can find a hospital that receives or received monoclonals by the website that has been posted here — it does not mean that the hospital will actually dispense them or that it will be easy to find the right department to dispense them
I have spent weeks (off and on) trying to find out how to get a hold of the correct department at Stanford hospital to give an infusion if I ever needed one. I FINALLY was able to contact two doctors in the clinic via e-mail to find out exactly What to do in case I needed an infusion. It is far from straightforward!
I was finally given a self referral Internet link to be considered and scheduled for an infusion. Even my CLL expert’s office coordinator had no idea of who to contact. And they are all AT Stanford.
I was told that a self administered Covid test (like Binax now) is OK if I was positive, but that these tests are not 100% accurate— tending to give false negatives. So, good for a first try but not 100%. I was also told that if I had been exposed but asymptomatic, that I needed a negative PCR test to get an infusion. The infusion unit said they don’t do the testing, either. Yes, every hospital is likely different, so you need to find all this out beforehand and re-confirm it at regular intervals.
So I think I have one hospital “nailed down” as a possible place to go if I ever run into Covid. But things can change and who knows how long my instructions from Stanford will remain accurate. So I have to find a “backup” hospital. Not easy since my primary care Dr Doesn’t even know where I can get a PCR test.
All this goes to show that just because infusions are available - it isn’t easy to know where to go and what to do if you need one. I always try to be prepared. Being over 65 and having CLL — it is probably a good way to go.
So don’t just trust an Internet locator - find the actual unit in the hospital that can tell you how to get it done. Talk to or e-mail an actual person. Every hospital has different criteria to get a test regardless if you qualify. And they don’t have a big sign out front saying, “Covid monoclonal infusions here”!
Again, Carl - thanks! We all need this help and I’m sorry you had a hard time of it.
I've been looking into it for a long time and finally got some information. I did hear from My CLL expert today telling me that a "Binax Now" test is good enough for infusion at Stanford - but all agree that it could give a false negative (95% correct, though). Testing in the US is really pathetic these days. It is next to impossible to find a home COVID test like Binax (Abbott)
But other than Stanford Univ. Hospital - I have yet to find a place that even will admit that infusions are available. And I am good at calling up and being annoying.
The US has purchased a bunch of the Regeneron tests (and perhaps one other) - but I don't know about the future. I know that AstraZeneca has a good monoclonal infusion, but they were not going to sell to the US government - rather sell directly to charge patients or insurance.
“And I am good at calling up and being annoyin”…. Lol. You are awesome, show great passion and drive in your posts. Go get r done J, we will await good news!
You noted oxygen level … I just bought a pulse oximeter at Walgreens (on sale $33), on previous advice per this site to have at home for the very reason you just went thru.
So lots good steps you noted to “be prepared” and thought I’d throw in the pulse oximeter point to have on hand at home. It might come in handy if needed.
The oxygen thing surprised me, as did them saying that if you were too sick you could also be disqualified. What I don't understand is why they are turning down those who are more sick than others. I thought the original use of this treatment was on those already admitted to a hospital
It's been sort of the opposite. Severe COVID patients do not respond well to the monoclonals, so it was "decreed" that they could be used outpatient only and to over 65 or high risk persons. At least that is the rule out here in crazy-land.
Thank You; I am in UK, and although this has been approved by the necessary govt departments, it doesn't seem to actually be available yet. I will see what I can find out over here to see if I get them. I am slowly starting to go out a bit more, on the basis that these antibodies will available.
Yes, and also keep in mind that they are now rationing the states with the monoclonal antibodies. We (Alabama) have been cut by 30%. I understand the reasoning, they said that they just now have capacity at 150,000 units a week of the Regeneron Covid MA's and 6 states were taking over 70% of the supply. With Covid heading up into the middle of the country and the northern states, there will be a need. Florida, by itself was taking over 70,000 units a week and that was when the capacity was 100,000 a week of the MA's.
I was told the other day (Cancer Center) that they do not and will not give it for exposure only and now that we have been put on "allocation notice", people will not be able to get it some times. The head of the Alabama Department of Health had a news conference yesterday and said that those who were scheduled to get it, some wouldn't, unfortunately.
I guess when DeSantis told Biden to "bring it on", Biden decided to cut the flow of MA's to the "Red" states.. The decision was made at 3 PM and the states were informed at 4 pm that they were on "allocation status" as of 5 PM. Florida was expecting 75,000 units and got 30,000. Now, the Biden administration said they were only trying to "make it fair" for the entire country. Anyway, point being, be prepared to be told they are none available.
We live in Nebraska in a town with population of 50,000 so our experience was a bit different but resulted in my husband (has CLL in remission, just off 3 years of Venclexta) receiving the infusion. Since I (wife) became positive with COVID, at his first sign of any symptom we called my husband's gp doctor. A tela health visit then took place. Immediately, the doctor said my husband was a candidate for the infusion hopefully yet that day. However, the rapid screen was not available so we had to wait about 36 hours for the result. His doctor did put him on the list for the infusion immediately, assuming hubby was positive which he was. Within 2 hours of getting the positive results he received the Regeneron infusion. At this point we think it has really helped. Mild symptoms so far.
I should add that hubby's doctor was the doctor who oversaw the Moderna trials that took place in our city. Maybe that's why he made things happen so quickly.
This is such a good post! I only had a vague idea of a plan. One would think that it doesn't need to be said that there should be no procrastinating or waiting out the symptoms, but I have been guilty of that on past occasions. I will be contacting my docs on Monday. Thank you for taking the time to alert us on how to prepare.
Thanks for this reminder Wizzard166. The CLL Society posted these checklists for us. At first I found them overwhelming but then when I chipped away at what I felt was important to me, I found they gave me a better sense of security. It feels good to have a just in case plan. cllsociety.org/2021/07/covi...
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