Finally Infected

[wizzard166]

Those that have read my posts know that I have taken much more risk than most of us would with CLL. I never got the first two versions of Covid, but as of a test I took this morning I have a Positive Result. I felt a slight strange feeling in my throat, and started getting nasal a bit on Tuesday Night. Wednesday a light cold started, and the throat got slightly worse. Yesterday Thursday the cold blossomed and the throat seemed to go away. Last night I had huge sweats with the heavy cold, and my temperature got to 101.4 (my normal is exactly 97.7). I have had significant aches and pains, along with the heavy cold, but the throat never got as bad as some I've had over the years.

I called the ER at Boca Raton Regional Hospital, where I had received an infusion of bamlanivimab plus etesevimab in December. I had been exposed to a two year old who then got ill and tested positive a day later. I didnt get tested and didnt have symptoms, but the special team in the ER at Boca Regional felt that with CLL exposure was enough of a reason for me. So I called that team this Morning, before I got tested, and they said the new rule was I had to test positive. Went out and bought a kit and tested, and I did test positive. They have now scheduled me for tomorrow at 10am for a Sotrovimab Infusion.

The ER nurse on this special infusion team told me that Regeneron and bamlanivimab plus etesevimab were not effective against Omicron, so their team was now only using Sotrovimab. She said Sotrovimab has proven to be effective against Omicron. Today my fever is down so far, and I don't think I'm as sick as yesterday, but I'm gladly going in for the infusion. Not taking chances with my CLL depleted immune system battling to beat Omicron on its own. I do think that my December infusion of bamlanivimab plus etesevimab is helping my body to beat back the most severe stages of Omicron, but why take the chance this thing does make it into my lungs. I've had five Pneumonias in my 74 years, but the last one thank god was in January 2016. The leading cause of death with CLL I think is Pneumonia, so knowing I'm now positive with Omicron I'll take the infusion that's being offered.

I did speak late yesterday with a private doctor's office that is specializing in these infusions (and other interesting side lines. The doctor said he won't deal with insurance, so going into his office would be private pay. I still would have taken his offer last night to come in today, if I knew at that point I was positive. He told me that the half life of the antibodies from the infusions in our bloodstream is one month. So one month after an infusion you have one half the antibodies left. At two months you are down to one fourth of the number of antibodies, and at three months you are down to one eighth of the number of antibodies left in your blood stream. I found that information to be usefull enough to add it to this post.

Carl

[wizzard166]

I'm replying to my own post, because I forgot to mention an article that I'm certain most of you will want to have access to.

The NIH put out a notice to providers (and the public) about their recommendations for what treatments have the greater priorities with Omicron. The second one on the list is the Sotrovimab I'm getting tomorrow, and i'm fine with that. I'm now providing the link to the article: covid19treatmentguidelines....

Carl

[Horatio2]

I would definitely get the infusions! Please take care of yourself and feel better soon!

[Justasheet1]

Carl,

Feel better and keep us posted please on how you’re feeling.

Jeff

[lexie]

Great that you were able to find someone to infuse you! My CLL specialist asked me to contact him first if my covid home test is positive, not my GP or the ER.

Good luck tomorrow.

[wizzard166 in reply to lexie]

Lexie

I'd verify with the CLL Specialist that they have a connection with a place that does Monoclonal Antibody Infusions. They may have told you to contact them for their record keeping purposes, but in fact have no connection to a place for treatment. If they do have that connection that is wonderful, because you would get priority. If they don't you want to make sure you know what places to start calling to get in for the infusions.

In my post I forgot to mention something my Primary told me on a recent visit, and before this latest covid diagnosis. He said that perhaps getting any more vaccines is worthless for me, due to none of my three prior vaccine shots producing any antibodies. He said maybe it would be better for me to get Monoclonal Antibody Infusions every six months instead.

Carl

[gardening-girl in reply to wizzard166]

Carl, one possible path for you when you have recovered, is to get vaccinated and then two weeks later get the Evusheld shots. And then a couple of weeks before your next 6-month Evusheld shots, get vaccinated again. That way even if you were not making antibodies in response to vaccination, in the intervening two weeks post-vaccination you might be giving your T cells information that would wake them up to SARS-CoV-2. Then two weeks later get the Evusheld shots. You would then have both a monoclonal defense as well as a possible T cell defense. That is a strategy put forth by Dr. Richard Furman on another CLL support site. You could ask your doctor about that.

[Ghounds]

Hope you feel better very soon and thanks for the half life information, interesting.

[AussieNeil Partner Administrator in reply to Ghounds]

The half life of your IgG is actually around 21 days for three of the subclasses and around 7 days for the fourth subclass, though I suspect the range may vary a bit based on values noted in the IgG insert information I received when having IVIG:

en.m.wikipedia.org/wiki/Imm... (see subclasses section)

If you have IgG infused, seems it might be a bit higher:

pubmed.ncbi.nlm.nih.gov/318...

I actually calculated my own IgG half life when I commenced IVIG and got close to the Wikipedia value of 21 days. This is important information, because with 4 weeks or longer between IVIG infusions, your IgG serum level drops quite low prior to your infusion. Weekly subcutaneous IgG provides a much more even blood serum level, due to the weekly top ups and because the IgG diffuses into the blood from under your skin over a day or so.

Neil

[wizzard166 in reply to AussieNeil]

Neil

You are incredible with your knowledge accumulation, and what you just gave to everyone is very valuable in terms of us understanding how long the IVIG protects us. The change in level of protection, during the interval between infusions, is also great knowledge to have. After all it means those of us on IVIG should be extra careful in the two weeks before new treatment, assuming there are four weeks between infusions.

I had been wondering if I could get another Monoclonal Infusion, considering I just had one in December. When I reached out to the private doctor who is in business doing infusions private pay, he was the one who gave me the info that the half-life of the Monoclonal Antibody Infusions was about one month. Thats pretty close to the 21 days you mention for IVIG, but slightly better. Who knows; I get the impression from speaking to this doctor that each one of us is different in how long the antibodies will last in our blood stream. He mentioned doing a blood test to see how many of the antibodies I had left from the Monoclonal Infusion in December, so I gather the result can vary from one individual to another (otherwise why do the test?) Anyway since the antibodies from the first infusion I had with bamlanivimab plus etesevimab are not working with Omicron (the NIH article I gave a link to references this), it shouldnt matter how many months its been. The only infusion working now with Omicron is the one I'll get tomorrow Sotrovimab.

Carl

[AussieNeil Partner Administrator in reply to wizzard166]

Great that you are having Sotrovimab. Not only does it still work with Omicron, it's one of the artificial monoclonal antibodies with

mutations in the constant Fc region aimed to enhance or eliminate effector functions or improve mAb half-life:

ncbi.nlm.nih.gov/pmc/articl...

Neil

[SofiaDeo]

Ummmm the half life is about 49 days. The molecule is a modified immune globulin, so sticks around a bit longer than the average one. But no one has finalized pharmacokinetic studies yet, so YMMV.

drugs.com/monograph/sotrovi...

I hope you have a mild course with no aftereffects!

[wizzard166 in reply to SofiaDeo]

Hey Sofia

So did you mean that the half life of the antibodies in the Monoclonal infusions is 49 days or the ones in IVIG?

It does make a huge difference what the half life is, since the generalized statement I've heard a while ago is that the Monoclonal Antibody Infusion is good for six months. If it is actually one month, as the doctor in private practice for infusions told me, then a person would be down to 12.5% or one eighth of the original amount in only three months. If it is more like 50 days it affects that number significantly. Then too is the question about the level of effectiveness at those reduced levels of number of antibodies months later. I asked the doctor if after two months, which at that time would mean only 25% level, would it still work against the Covid Virus. He said yes, but I have to really wonder about that. Then of course the idea of going three months without another infusion is highly questionable. If however really low levels of antibodies in our blood would still protect against the Covid, then I understand the six month concept.

Carl

[SofiaDeo in reply to wizzard166]

I attached the monograph for sotrovimab, which near the bottom states the half life is 49 days. As AussieNeil noted, this antibody has been modified, so the half life of it is a bit longer than standard human immune globulins. While immune globulins and antibodies are similar, they aren't identical.

pediaa.com/difference-betwe...

Sorry about the confusion, I misspoke when I stated "it is a modified immune globulin"!

[SofiaDeo in reply to SofiaDeo]

Also, we don't really know the "optimum" amount of antibody needed yet for maximum protection, so any "guesses" as to how "blood concentration" relates to "effective protection from infection" is likely just a guess. It may turn out that the amount left around after 4 months is effective, or 6 months, or another value. I know vaccines for Hepatitis have ascertained titer levels of antibodies that generally confer prevention of disease transmission if exposed, but I am unaware of anything like that existing for Covid monoclonals. The Hepatitis titer values took quite a while, years, to figure out those numbers. IMO it will be a while yet until that data for Covid titers are ascertained. But since Covid looks like it's going to affect more people than Hepatitis, I am guessing that work has started on ascertaining this.

[AussieNeil Partner Administrator in reply to SofiaDeo]

The challenge with COVID-19 is that a titre that provided protection against Alpha and Beta, is less effective against later variants, particularly Omicron. COVID-19 is more like the flu than other viruses for which we have vaccines.

[Pin57]

Glad to hear you found and are getting Sotrovimab. The drug works very well, n aids in a quick recovery.

Hope it works well for you Wizzard. Let us know how you are doing afterwards ok? Take care.

[wizzard166 in reply to Pin57]

Had the infusion 10:00 am this Morning. Had new needles for this that have a safety switch, and they were quite long. Thank God the ER nurses are super sophisticated, and mine got it in with no difficulty. I had no adverse reaction in the hour they keep you after the infusion is finished. Its now night time and still no adverse reaction. I don't know how long it takes for a good result to be obvious to the patient, but I have high hopes for this.

[lelliottaeten in reply to wizzard166]

Thank You for the correction. I live near Philadelphia, PA and was flatly told there was nothing that could be done for me unless I couldn't breathe in which case as a last resort to go to the ER! My Doctor is with Jefferson University (Main Line Health).

[wizzard166 in reply to lelliottaeten]

Lelliottaeten

You are living in a city with tremendous medical people and facilities. Jefferson is widely respected. My Cousin was once Chief of Dermatology there, and now is at U of Penn in Philly.

University of Pennsylvania is Ivy League and has one of the better CLL departments in the Country. I didnt seek my CLL Specialist there, even though my Cousin is active on staff at the Medical Center, because I felt Dana Farber was top of the list. Still I respect very highly the staff at U of Penn, and you could always seek to see someone there instead of the person at Jefferson who gave you horrible information.

The NIH and thus CDC guidelines indicate that a person who has high risk, should have Monoclonal Antibody Infusion available to them even with simple Exposure to a person who is Positive with Covid. Even if you don't yet have symptoms, it is advisable for a High Risk person to seek this treatment. The government in fact has said that Monoclonal Antibody Infusion is to be provided free of charge to those eligible. They add that an "Administrative Charge" can be given to the patient, but that is very low in cost compared to the infusion itself. Simply put a person with CLL is Very High Risk due to a Compromised Immune System.

Get yourself to a top CLL Specialist at U of Penn, or if not then seek out an Immunologist for help in access to infusions.

Carl

[Pin57 in reply to wizzard166]

My wife recovered fast with it … she is up n out doing lots of activities after the “quarantine period”… maybe a small covid hangover, but nothing serious or worthy to talk about and zero side effects from Sotrovimab.

Drug works against Omicron (thanks to the developers, exceptional drug indeed!) … and you should see good results real soon Wizzard.

Hang in there and recover 100%.

[wizzard166 in reply to Pin57]

Pin

Does your wife have CLL, you, or both of you.

My worry until I recover, is will those of us with severely compromised Immune Systems benefit fully from the Infusion. Even though I'm not on treatment yet, my Immune system throughout many years has been in trouble prior to diagnosis. I was told to seek out an Immunologist in January 2016 when in a hospital bed with Double Pneumonia. I never followed that advice upon discharge, and didnt get diagnosed CLL until February 2018.

I read about the Monoclonal Infusion, and what scares the hell out of me is what they said. It says that the Monoclonal Antibodies will stimulate a person's own Immune System to make antibodies to fight the Covid. What the heck? I don't produce antibodies. I thought I was getting those antibodies to fight this thing, understanding my Immune System isn't exactly working great. Something is working in me I think, because I haven't gotten many URI like I have in the past before diagnosis. I don't understand it, but maybe its my T Cells.

So my big question is whether any of us with bad immune systems have been helped to beat Covid with a Monoclonal Antibody Infusion. If your wife fits this description, then I'm lifted in spirits this Morning knowing that.

I do feel better today with limited coughs and sneezes, and I'm exactly 24 hours from being released yesterday at the Infusion Center. So maybe this is really working. Wow.

Carl

[Pin57 in reply to wizzard166]

Wife has stage 4 breast cancer (TNBC type … not a good acronym) is under extensive treatments in a special trial we were fortunate to find thru my CLL doc … pays to ask around about trials! She’s getting chemo, an immnio infusion and a new trial pill… AND it’s working, stabilized her condition.

Her immune system is shot now n with her cancer stage she was very high on the eligible list for getting Sotrovimab. It was a challenge to find it but my advice to all on that issue is … don’t stop at a “no, we don’t have it” instead keep calling places that might have it… ask for leads, n keep calling. It’s out there just gotta be willing to travel some to get it.

Anyways, in short Wizzard, Sotrovimab worked well for my wife even with her case. She like you had multiple vaccine shots (5 in her case, she did Novavax trial way back in Dec 2019 that contributed to the large number of shots)… she didn’t get tested for antibodies but her weekly blood work is always on the borderline numbers with the heavy duty treatments n her doc said her immune system definitely is compromised.

I was a rogue man to get multiple covid vaccine shots way early in the pandemic trying hard not to get n give it to her. Her doc told us early on in the pandemic she can’t afford to get Covid with her case.

Well somebody else gave her Omicron n so the wheels churned quickly to get Sotrovimab and like I said it worked beautifully n quickly.

You should take pleasure hearing that story … if it worked for her, it should work for you too! … it also worked well for Newdawn n she has written great posts all about that. Great MABS it is Wizzard!

I’m pulling for ya … and anyone else that gets covid. There are great treatments … now they need to crank up the factories production to make them more readily available!

[wizzard166 in reply to Pin57]

Hey Pin

I'm so sorry to learn of your Wife's battle, and of course your battle with her. It is good to hear your words, because it tells me the kind of man you are, and how you do anything to give her strength and protection. My thoughts and hopes go out to both of you, as you dig in the trenches for the battles ahead.

Yes if your wife handled Covid with Sotrovimab, then it should be a piece of cake for me. I can imagine your disappointment when you learned that the early vaccines aren't helping with Omicron, other than to reduce perhaps the strength of this new viral attack. You were trying to shield her from you, and this vicious Omicron takes that away from us. I realized when I read about a month ago Omicron that its infectious rate is so incredibly high, and the original vaccines do almost nothing for us against it, that I was no longer able to be in a Herd and thus safe. It meant I was bound to get it no matter what I did (other than locking myself in a room eternally, which I will not do). This scared the heck out of me, even though Omicron was like a simple cold for normal folks, because I know of course I'm abnormal and in danger. A simple cold for me (even non Covid) can easily end up with Pneumonia if I don't attack it violently (like with Z Pack). So learning I was doomed to get Omicron, I didnt live in a bubble and held my breath instead. Now thanks to Sotrovimab it looks like I can get through this latest battle.

It is raising my consciousness now, ahead of the curve, that I have to think about trying to get regularly planned Monoclonal Infusions every six months. The trouble is the darn virus keeps mutating regularly, so timing is of the essence. if I had gotten Regeneron as part of that planned program, it would have failed me. I was lucky that my attack by Omicron came when the medical people had just stopped using Regeneron and switched to the only one that works with Omicron in Sotrovimab. Unfortunately, my idea of planning regular infusions has two major obstacles. One is the Pharma industry will have to keep working on which infusion is good for the current version of the virus; and also I'll need governmental approval of a regular infusion program for people like us (and i wouldn't hold my breath on that one)

Oh well I should just relax and take it one day at a time.

Carl

[Pin57 in reply to wizzard166]

Big believer that vaccines do help us all even if one doesn’t rack up spike (binding) antibodies … So yeah Omicron snuck thru 2 Novavax shots + 3 Phizers in her case but again those 5 shots plus Sotrovimab did trick for full recovery n no ER visit. That’s all that matters Wizzard…

And as they ramp up more treatments availability especially soon massive amounts of Paxlovid on the way (by April?) … could be a game changer in the pandemic?

Well keep us informed with great news about your recovery and thanks for the kind words. Do know my wife is doing well … thanks to science and the new IPI 495 pill just came out for treating TNBC.

Much hope there is with the amazing advances n

developments with

vaccines n treatments.

[lelliottaeten]

You are lucky you do not live in the US. I was told to isolate for 2 weeks and take over the counter cold remedies because no treatments are available in the US ( i guess except for the former president) even with CLL.

[Ladylin151 in reply to lelliottaeten]

My husband and I, as well as my mother (in a different part of the state) all received monoclonal antibodies about a month ago and they are still available in my area, although I do not know which ones nor the criteria currently used to administer. My husband went through his oncologist and my mother was in the ER to receive the prescription.

[wizzard166 in reply to lelliottaeten]

Lelliottaeten

I think you need to understand I am in the US and this is the second infusion I've had; one in early December after being exposed to a two year old who was infected, and then now because I developed symptoms and tested positive.

Of course what the former President got is now available to all Americans, and its available in every State and more of course in larger population areas. In Florida there are 26 sites set up in County or State Parks for these infusions, and this is totally the effort of a company the McGuire Corporation. Many local hospitals are now set up to give the infusions, and even private doctor offices.

Whereever you are getting your information it is not only old, it is totally wrong. Wherever you live just go on a computer on Google Search and type in Monoclonal Antibody Infusion Near Me. Bingo you now have places to go to.

Carl

[Jonquiljo in reply to wizzard166]

What the former president got was Regen-COV which is totally useless against omicron. Up until fairly recently, Florida has been giving out Regen-Cov even though all the data shows that it will not do anything against omicron. See ...

floridaphoenix.com/blog/gov...

Finally, the FDA revoked Regen-COV's EUA to stop people from giving it out.

Right now, the only omicron-capable monoclonals are Sotrovimab and Evusheld (only Ok'd for prevention.). These monoclonals are terribly scarce and (worst of all) each state has it's own rules for handing them out.

Paxlovid is a quite capable antiviral, but is harder to get right now even though 20 million courses will be eventually available in the USA. Paxlovid is a wonder-drug - and it is expected that it will outlast any variant that can be thrown at it as it targets the viral protease which is highly conserved.

Paxlovid should be a fairly good supply around April - mainly because the US did not purchase it "up-front" and waited until approval. It supposedly takes 6 months or longer to synthesize.

[wizzard166 in reply to Jonquiljo]

Thank you Jonquilo

I did read in the NIH article, which I provided a link to earlier in my Post, that Sotrovimab was the only Monoclonal that is working against Omicron. They do not mention Evusheld, but likely because it is so new.

That article listed the Monoclonal Infusion with Sotrovimab second in priority after the Antiviral treatment. This is that link once again covid19treatmentguidelines....

This is the top recommendation from the NIH, which is after this followed by their recommendation of Sotrovimab.

Nirmatrelvir 300 mg with ritonavir 100 mg (Paxlovid) orally twice daily for 5 days, initiated as soon as possible and within 5 days of symptom onset in those aged ≥12 years and weighing ≥40 kg (AIIa).

Ritonavir-boosted nirmatrelvir (Paxlovid) has significant and complex drug-drug interactions, primarily due to the ritonavir component of the combination.

Before prescribing ritonavir-boosted nirmatrelvir (Paxlovid), clinicians should carefully review the patient’s concomitant medications, including over-the-counter medications and herbal supplements, to evaluate potential drug-drug interactions. See the Panel’s statement on the drug-drug interactions for ritonavir-boosted nirmatrelvir (Paxlovid) for details.

Carl

[blowinginthewind]

I hope all goes well with the infusions and you are soon feeling well again. The antibody information is interesting and very useful.

Take care

Liz in UK

[wizzard166 in reply to blowinginthewind]

Lets face it, most of us have not had great results with the Vaccines, due to our compromised immune systems. These Infusions are our only hope, until the new Pill is available and working well.

[blowinginthewind in reply to wizzard166]

I made some after first vaccine, but as consultant said, I have no idea what that means in practice. I have bothered after the three others. I have now received my priority PCR test and my letter, so I feel less anxious now

Liz

[Ebenezer68]

Have you been vaccinated against Covid.

[wizzard166 in reply to Ebenezer68]

Twice with Moderna, had blood test after second shot and had no antibodies. Had third shot, this time Pfizer, and another blood test showed no antibodies. Oh well Vaccines for Covid just don't work on me; likely, due to CLL.

My Primary said I might as well look at getting the infusions every six month.

[Ebenezer68]

My reason for asking, I am also vaccinated with all 3 shots. I am a member of a choir that’s starting to practice again this month. We are around 75 people from age 12 to 80. I keep debating whether I should expose myself to this. I am 72 with CLL and type 2 diabetes. I loving being with these people, but I am afraid of the risk. My oncologist said go for it. We all live in the southeastern U S. I started taking Imbruvia 7 mos ago. I am really frustrated.

[SofiaDeo in reply to Ebenezer68]

Wow, this is a difficult decision. Singing in an enclosed space with a large group has been shown to be a "higher risk" than many other activities. And you also have a comorbidity, diabetes. You don't mention if you get a lot of infections (skin, respiratory or other), if you have air cleaners or sanitizers at home to help with re-infection when exposed to colds/flu/Covid. Or if you would have much potential exposure other than this group, or how often choir practice is. All of this would need to be considered IMO. I don't envy you this problem.

[Davidcara in reply to Ebenezer68]

I know you are not asking for my opinion. Make sure you realize you will be participating in a very high risk covid exposure environment. In addition to having CLL + Diabetes, risky behavior. You probably have little to no protection from the vaccines

If you go forward, try to get Evusheld, rapid test, and know how to get therapeutics, wear an N95 too.

Not suggesting this to be a spoiler. Just some people don’t realize the risk.

[Justasheet1 in reply to Ebenezer68]

Get Evusheld and while singing in the choir don’t forget to say a prayer too. Jeff

[wizzard166 in reply to Ebenezer68]

Ebenezer

Listen to me. Research online where the Monoclonal Antibody Infusions are being given in your area. Google Search: Monoclonal Antibody Infusions Near Me. Google will find all of them. Google is the only good true search engine, so make sure you use it. Then contact what is close enough from the list you put together, and talk to them, and get it set up with at least one of them for you to be able to call in and get scheduled.

Then enjoy your Choir and listen to know if anyone you sing with tested positive or got sick. Get tested in either situation or just if you get a cold. If you get a positive, then call the center you talked to and get scheduled in. I'm on Medicare and it has not cost me anything. I heard from the Nurses that different insurance companies may result in costs out of pocket. Living is better than dying, so do what I'm saying and plan ahead like I did.

Carl

[Ebenezer68 in reply to wizzard166]

Will call the Hematologist tomorrow to see if they can get me an appointment. Not scheduled to see him until March. Thanks for that information.

[Ghounds]

Thanks AussieNeil and SofiaDeo for those explanations.

[newyork8]

Thank you for this useful info.