I talked with my doctor today, and if I understood her correctly, she said that there is no data out showing CLL patients with my prognostic factors (mutated 13q deletion) have died from Covid. She said that she wouldn’t recommend me get the booster or Evushield. She said I simply don’t need them and I’ll do fine since I’m 52, just diagnosed and early in CLL. No other health issues. She said I will likely get Omnicron but will get through it. Not to worry. My CLL specialist doesn’t seem to support this view yet she couldn’t provide any data to support her concern. I’ve been offered Evushield but now totally confused on if I should even get it. My doctor also told me that 98% of the cases now are Omnicron and the vaccines don’t even work against it. Any input from this group would be greatly appreciated!
Who do I believe?: I talked with my doctor today... - CLL Support
Who do I believe?
Eight studies where booster vs Omicron infections shows consistent results ~50% of higher level of effectiveness.
healthunlocked.com/cllsuppo...
Many would be interested in a study showing those with 13q del mutated IGHV aren't likely to die from COVID-19, but I don't know how you explain why otherwise healthy people can die.
Neil
Perhaps the doctor’s statement was meant to be: a CLL patient early in the disease history with no previous treatment and no other health issues has a similar risk to a healthy individual who has been fully vaccinated for a negative outcome? And this risk is low?
I’m uncertain why the GP wouldn’t recommend a booster? Does he/she mean a 4th shot? That might make a bit more sense and I would tend to agree that Evushld probably isn’t applicable for a low risk CLL patient given supply constraints. Something may be getting lost in the translation.
I’d listen to my CLL doctor. That is the safest way to go.
Best
Mark
Neil - thank you for passing all this helpful info along!
Neil - Thank you for this! As always great info!
None of what your doctor has said makes any sense to me. You might want to consider a second opinion.
Your mutation and genetic status is not so important as the state of your probably dysregulated immune system which means you may not mount a decent response to covid.
I don't like it when doctors try to wriggle around things without the facts to back themselves up and it sounds as though this is what she is doing. 
Jackie
I hear that there is a plan to build 'The Museum of Evidence Based Medicine'. Somewhere on the flatlands of Norfolk I believe. It may have to be quite a large structure the way clinical practice has been going in recent times.
Take good care of yourself and get another opinion !
If your CLL expert is offering you Evushld I’d accept the offer. Perhaps there is a greater abundance of this treatment in Hawaii or perhaps because of your previous breast cancer your CLL doctor feels you have a greater risk of a poor Covid outcome. There are lots of variables. Trust the expert.
Best,
Mark
Jim,you have certainly been involved a in a harrowing journey with your CLL. I have really not heard such devastating problems such as you have had. You have carried through with such dignity about your travails. I have appreciated your help with all of us concerning your many personal problems. May God bless you on your new journey,and many thanks for all the the help you have given yo all of us!
I would run far far away from this "physician" who is clearly speaking without data to back it up. While it might not be stopping people from getting the current mutation of covid, it's still preventing hospitalization and death incredibly.
You asked “Who do I believe?” … IMO your CLL doc who advocates getting a covid booster shot. I too like AussieNeil noted, how can your other doctor claim those with 13q delection, mutated, hasn’t died from covid when healthy folks have? Be great if there was a study to back that wild claim cus I too am 13q deletion, mutated. Like you I’m alive thru covid (haven't gotten it yet) so maybe your other doc is referring to you n me, 😂?, just kidding to add humor, we need a laugh or two everyday, right?
Both my CLL n PCP docs strongly advocated to get all the covid vaccine shots (I’ve had 4 getting ready for #5 soon) n to not roll the dice wo them n regrettably end up in the ER (or worse ICU) with a mean case of covid. Then it’s too late to get a covid vaccine shot. Why do that?
If you are still uncertain, suggest ask a 3rd doc’s opinion (a CLL doc) to break the 1-1 tie.
Take care Cfarrar and best of luck with your decision and with staying as healthy and enjoying your family n life along your journey!
I am not aware of any study giving results of deletion status in regards to CLL patients surviving or dying of Covid infections, regardless of the type of variant, and I read a lot of studies. I would be keen to read these studies. Keep in mind that people, even the very early time of their diagnosis, have been shown to have some immune disregulation.As others have suggested, if you have been offered Evusheld, take advantage of this treatment.
Sandy Beaches
They work at 74% against it and help you not be hospitalized. Get it. My doctor told me to do whatever I can to prevent anything.
Well I'm 13q mutated and I honestly thought the worst was coming when I had covid last year. I am triple jabbed now and when I got covid recently, I didn't hesitate for one second to take on the offer of Sotrovimab. I was still unwell although nothing like last year but I had to really rest for way over a week. Take it - that's my advice.
Wow, wow, wow, I am 66 year old q13, muted on initial treatment; ibrutinib. That is quite a statement, no q 13’s have died of covid.
You will do fine if you get covid, how reassuring. Whoa, does your MD recommend you to notify her if you get covid, so she can prescribe antivirals or monoclonals? Or does she feel those would not be necessary. Did she mention her thoughts on Long Covid, or is that part of doing fine.
She is right, you probably will recover if you get covid. But, why not protect your self as well as possible ie vaccinations, Evusheld ect ect ect.
While we don't know Dr. Coutre's markers, this noted CLL specialist died from "complications of leukemia and Covid-19". So while there may not be data out regarding CLL patients who do Not die of Covid, there is at least one CLL patient who did.
And this recent journal article reinforces that, much like the general population with a few exceptions, one can't predict who will get severe disease/die from it. Even an extremely knowledgeable CLL specialist with top notch resources succumbed. It is bizarre to make a statement that your age, markers, and being early into your diagnosis somehow affects a Covid outcome.
You have kids, a partner, and likely are still working in a fairly densely populated area. Get the Evusheld as your CLL specialist recommended. Believe your CLL specialist.
Regarding CLL patients and Covid:
"Severe Covid-19 was equally distributed across subgroups irrespective of age, gender, BMI, CLL status except CIRS (p < 0.05). "
ncbi.nlm.nih.gov/pmc/articl...
Also know of a couple CLL patients (one Chicago, one FL) with CLL and vaxed who didn’t know that the vax may not protect immuno compromised/ immuno suppressed, thought they had protection and ended up dying of covid.
My own heme/onc recently said that fewer of her patients were dying now than before. I presume some of those were CLL patients and even that some of the fewer part status had CLL.
The nurse at my GP's surgery said I didn't need the4th vaccine. I called my haematologists and they said I did On W and W with relatively low blood counts after 13 years and never been treated
Suggest you check out Bella B's latest post, read the report and forward it to your current GP while you search for a better educated replacement. Good luck.
Evusheld is not a vaccine, it is preventative antibodies and why would you not get it if you can?
It’s a 6 hour plane ride to get it. I’ve been a safe little bubble here on my island. Just wondering if it’s worth the risk to travel so far to get it. Especially since I already got two moderna vaccines and produced antibodies after I got them. Just trying to weigh out the pros and cons.
get the 4th vaccine I’d say! better safe than sorry. Vaccines save lives. Period
I had an autoimmune reaction to the vaccine, so that is why I’m struggling with this decision. I really don’t want to go through that again it was itchy sores all over my body for 5 weeks.
What sort of autoimmune reaction? what was the diagnosis of (name of) autoimmune reaction) , with the Pfizer shot or Moderna? with all three shots you had that reaction? (sorry so many questions 
I saw 8 different doctors and no one could diagnose it. But the timing pointed to the moderna shots. So I never got a diagnosis other than “allergic reaction”.
But not the allergic reaction as dangerous to your life, right? Get Pfizer then as your fourth shot, the booster.
cdc.gov/coronavirus/2019-nc...
Thank you!
Given the airplane ride, and having made some antibodies, I too would reconsider flying just to get Evusheld. Also keep in mind, Moderna has twice the active material as the others, and has had the highest incidence of side effects. If it were me, I would ask for any boosters to be NOT Moderna. You might be reacting to an excipient; rare but not impossible. Moderna contains tromethamine which can cause allergic type reactions. The others don't use this excipient. Give this info to your docs, you may want to avoid injections/be careful and have a crash cart available if having to have something with tromethamine in the future. In case you reacted to tromethamine and not a high dose of immune stimulating material of the vaccine. You didn't list all your symptoms, but reactions Have occurred in others in the past using higher doses of tromethamine for other conditions.
Wow,that's far.
Put Cll aside , I know 7 people without Cll that have died from Covid. All 7 didn’t have a vaccine. In fact my cousin and his wife both had Covid in there late 50s. They both went to the hospital at the same time and refused treatment other then oxygen. The husband died within 24 hours and his wife made it through it. She still thinks the vaccine is a conspiracy.
I’m not saying your Dr is right or wrong I’m just giving you a little history of people close to me without health issues not vaccinated and 7 died.
I had Covid prior to the vaccines being available. I was sick for 3 weeks and thank god I made it. Since I’ve gotten every vaccine available, that’s just my choice.
Best wishes
John
I am in the same situation re. 4th shot and decided to seek out a CLL specialist. My current doctor is a hematologist.
Hello Cfarrar
I went through covid before Christmas and came out fine. Any doctor would be remiss if they did not error on the side of caution. No easy answers may you make our decision with peace. Blessings.
Why would you not accept the offer of Evusheld? It’s painless, no side effects ( or much less than vaccinations) and if it only gives you 1% of added protection isn’t it worth it?
Cfarrar - Weigh the major risks of NOT protecting yourself best you can from getting covid … you note possible cardiac concerns with Evusheld but check this new article about possible cardiac concerns and other long term affects if you GET Covid.
cnn.com/2022/02/22/health/c...
Best to do what you can to protect yourself against covid IMO via vaccines, Evusheld, etc
Choice is yours… and good luck going forward.
Sorry I didn’t realize what a burden you would have to receive the shot. No I wouldn’t get on a plane.
There must be better doctors , primary care physicians , there on Hawaii , right? sounds careless to me, what your doctor said there to you..
I am W&W, no symptoms, had 4 Pfizer shots, and in an LLS study last year I measured to have responded to the vaccine. That said, I was given access to Evusheld (which my CLL doctor had said I should get if I found it), and I had the shots on Monday. The immunologist who made this available and the CLL doctor both indicated there's still plenty of uncertainty about how the vaccines work with us, so why not get all the protection that's made available? It sounded as if the risks with Evusheld are very minimal.
I've had no reaction to the shot except for taking an unexpected nap when I got home.
Here's to good health for all of us!
Lynn
Lynn my issue is that I have to fly 6 hours to get it. I’m just not sure flying for that long and getting possible exposure is worth it.
Interesting twist. I must say that the thought of going through an airport and sitting on a plane for hours would not appeal to me one bit. Given my situation (feeling protected by vaccines and not extremely worried about dying from Covid right now), I would pass on the Evusheld. The cost/benefit doesn't work out.
Good luck with your decision. Hope you do well either way!
Yes Lynn that’s my thoughts exactly. My hematologist says my blood numbers are good and is not too concerned about Covid. But my CLL specialist who really isn’t that on top of my numbers is dispensing Evushield out to all her patients. It’s just hard to pass on something that everyone wants.
I'm struck with how exhausting this Covid stretch has been with all the decisions that we face over and over and over. I never realized how easy life was pre-Covid! Wish I appreciated it then.
Yes, I feel the same. This past year ive had to deal with decisions around how to deal with breast cancer options, CLL and Covid. It’s been overwhelming for sure!
I am considering a 9 hour transatlantic flight soon and if I go I will bring enough N95 valved masks and respirator masks to change out each hour. I did get Evusheld already but not depending entirely on that to protect me. I got the OK from my CLL specialist to go.
I don't think you need to change them out every hour, where is this recommendation coming from? Healthcare workers often use one per 8-12 hour shift. We would toss them (and everything) coming out of a known infectious patient room, but we Knew those patients were contagious.
If you are thinking about the recent social media buzz re:"2.5 hours", I would want to see the studies.
If you notice it's become noticeably harder to inhale after a while compared to when first putting it on, generally indicates the filter material is full and should be changed. IMO the airport queues and areas inside the airport are the most dangerous, compared to the plane itself. My understanding is ever since Covid, most airlines now filter the air much much better than previously.
If you think you are at extreme risk, a non-valved N95 will offer more protection, simply because it is possible for valve failure to occur. Not common, but this small percentage of risk isn't possible with a regular non-valved mask.
aarp.org/health/conditions-...
Note that official recommendations are:
"Q. How long can I wear the N95 respirator?
The N95 can be worn until damaged, breathing becomes difficult, or contaminated with blood or bodily fluids."
lms.learning.hhs.gov/conten...
Thanks for this! Great links.My experience with a good fitting 3M 8210 N95 respirator is that it is full of exhaled water vapor in a little over an hour, with visible droplets. I wear these constantly everywhere so not unexpected and switch out. I am never unmasked in public or on group hikes, so agree about the terminals as well. The advice I got was from the late HU misslockyourposts in 2020 and she thought every 30 minutes on flights with a N99 or N95, which hasn't been my experience, the hour is closer.
Hmmm, have you tried a different NIOSH type? I find I can wear certain ones 4+ hours until they get hot/uncomfortable, and I have never had moisture build up like that, that doesn't seem comfortable. I am not in a humid area though, I imagine that might affect moisture buildup if outside. Although airplanes aren't humid, I was doing 4 hour flights with one mask, no moisture buildup.
cdc.gov/niosh/npptl/topics/...
I got some molded 3M valved 8511 N95 masks for yardwork and noticed those seem to be more uncomfortable/sweaty than the Gerson brand flexible/foldable ones for me, I won't be purchasing them again if I can help it. I find the Gerson 2130 NIOSH particulate respirator easier to fit (they have a newer model 3230 I might try) and much more comfortable than any 3M's I have tried, and those were the one I was flying with. But my face is moderately small, and many of the 3M's seem large/have much more metal for nose adjustment to me. The Gerson foldables are softer & flexible, not like the harder molded types. Plus the soft types claim not to fog glasses as much.
No financial interest in this company, I just like their masks better than 3M 
What crazy big island doctor is saying no booster? Remind me to stay away from her. You are at risk with CLL and Omicron. Listen to your CLL doc. And get boosted ASAP.
She was concerned because of the autoimmune reaction I had to the vaccine. Also she mentioned the fact that a mounted a robust response to the second moderna shot.
But just because one develops antibodies, doesn't mean one is immune from a severe case of Covid. And the definition of "immune compromised" is "immune system that doesn't react the way the average healthy person does." While vaccination generally decreases morbidity & mortality of infectious disease, there's no guarantee. Especially in those whose immune system is unpredictable.
Life expectancy question 
Pregnancy and cll/sll
So much to learn
What shall i do??
