1. Has anyone taking Calquence received a MAB infusion? Waiting to hear from my Dr to confirm it’s safe and doesn’t cause any drug interactions. Seems unlikely, but I want to be certain.
2. Applied for a MAB infusion via the Stanford Health process and explained that, although I didn’t test positive for covid and have not had an actual exposure, I was requesting a treatment since my job requires travel and I’m hoping to avoid getting covid since it’s potentially deadly for me. Received an immediate call, but since I don’t have covid nor technically been exposed, I’m not eligible.
What that means to me is that I must lie and claim I’ve been exposed to get a potentially life saving and life changing treatment. Needless to say, very discouraging.
3. FDA Approved PreP MAB. The same Stanford nurse explained that they are waiting for CA State guidance regarding the distribution and priorities. She said there are approximately 700,000 doses for the USA so they need to understand what quantity comes to CA and wait for which patients get top priority. Hopefully we don’t get caught in a bureaucratic nightmare!
Hate to be the “half empty glass guy”! There’s a treatment that can make my life better and it seems the only way to get it is to lie or to hope my state gets some of the 700,000 doses and that I am considered a priority. Super frustrating!!
Any suggestions/advice would be appreciated. In the meantime, my wife and I will continue to remain locked down since that’s the best way to avoid covid.
Thank you!
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OaktownN
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I am on Calquence and have had regeneron mab infusion. The infusion was short and easy.
Lies come in all sorts of colors, not just white as some think. Some say there are only four colors of lies - white, gray, red and black. But there are blue lies too. It’s also generally accepted that certain types of lies are not only acceptable, but expected. If someone says 500k is the bottom offer they will take on their house, I am pretty sure they would take 499k. Negotiations are a dance of lies with each side not wanting to show their real hand.
I don’t know about the color code and shades of lying, I think more in terms of harm and good. If my child gives me a tie Christmas morning I consider downright ugly, I am saying I love it and wearing it to Christmas dinner. That’s a lie that does more good than harm, other than I might get another ugly tie down the road.
Lying or enhancing an exposure to get a protective mab infusion in a state where there is a mab shortage and as result a person ill with Covid is deprived of a mab seems harmful. Fudging on an exposure to get a life protecting mab infusion in a state where regeneron is plentiful would cause more good than harm, maybe even freeing up an icu bed as we with Cll have a much higher risk of hospitalization.
Hopefully this moral dilemma gets fixed with an adequate number of the new antibodies made available. I think those of us with Cll will jump straight to the front of that line, we are the poster children for protective infusions. Will they be available in a week or in months, who knows? In the meantime, is it okay for a vulnerable person to fudge an exposure to work around an emergency use authorization that should have better protected immune compromised people? I don’t know, I am no expert on ethics for sure.
We do need a new color for that sort of lie. I think it would be close to white on the color spectrum. Maybe an eggshell white lie?
With this question there are no absolute answers. However, one thing I've learned with my illness is that I have to be my own advocate. It is up to me to make my way forward in the best way possible. This includes in selecting doctors, treatments, and any measures of protection. In my experience if you just settle for what others offer, without evaluating all of your options, then you may not get what you really need.
My advice, don't be afraid to look out for your own self interests. The life you save may be your own.
LOL Jeff, That was a wonderful and entertaining response, but you left out the fact that we immunocompromised are more likely to be incubators for mutated variants and that we'd be doing the world a favor by avoiding infection.
Regeneron has a compassionate use policy that you may be able to apply for (regeneron.com/downloads/reg.... It is a longer path than "lying" to Stanford, but is a path if you want to stick strictly to the facts. I had also asked Stanford for a preventative MAB infusion as well as a booster (before they were approved) and received similar replies. The hospital has rules and basically has to follow them.
In the case of the booster, I chose to go to pharmacies and say I was unvaccinated in order to get the booster. I'm with cajunjeff on the shades of lies. If you tell a lie so you can cut into line ahead of someone else or take a treatment away from someone else, that is harmful. If the only result is that you get access to something that the rules will allow soon anyway, that is completely different. I do not have to travel for my work, so I can wait it out. If I did have to travel, I would blur a lot of lines to ensure my kids have a father around.
Lie. It’s simple - if bureaucrats make personal safety a problem, then you must lie. They are, after all, making up rules with no logical sense.
CLL is a poorly understood disease overall. I wish I had a dollar for every Dr that I have spoken to that gave a blank stare when I mentioned CLL.
As far as the AstraZeneca Evushield doses - we have a problem. We only bought a small number of doses in the US. The powers that be would prefer to send large checks to people than to secure large numbers of doses of Evushield.
With more than 1/7th of the US population, California should get about 100,000 doses in the initial allocation. More will be coming - but its not clear when.
The problem is that if you can score one Evushield dose, you need to have proper documentation so that you can get another dose every 6 months. So it’s best to get the dose via a route that will keep you on the list for a “refill.”
Now I understand the urgency of your question from 2 days ago about the availability of (the 2-injection combo drug) Evusheld. It makes me wonder about how the 3 drugs may interact. Most of us who have undergone treatment have gotten quite a cocktail mix of drugs, but I am curious about this. Care to weigh in AussieNeil ?
IVIG and subcutaneous IgG continue through treatments and I'm not aware of any mechanism for a potential interaction of a COVID-19 antibody with Calquence.
Sorry Neil, I should have clarified my statement. I was wondering about possible interactions for someone who might receive Regeneron mabs, and then get the Evusheld injections a couple months later.
Regeneron and Evusheld are monoclonal antibody mixes derived from human antibodies, which were found to be specific to different parts (epitopes) of the SARS-CoV-2 virus. I don't see why there would be any interaction.
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