I have just been told I have cll from my hematologist. Another appointment in a couple of weeks to get the formal diagnosis and status. I was told I will most likely be put on the W&W protocol. This whole thing is turning my life à bit upside dowm as I absorb and rationalize everything. no choice in the matter. I will take things one day at a time. my first question is the use of masks. I have been reading à few posts regarding this subject matter and it seems like there is no golden rule when one should wear à mask, just common sense or personal préférence/circumstance I still work..have my own business. Although I do not have much staff none wear masks in the office and I usually eat in a restaurant for lunch.
I would appreciate to hear back what is recommended. or the best practice to employ with respect to wearing masks in a working environment. thanks
ps. my user name is ping pong spelled backwards.
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GnipGnop
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Our Pinned Post section is a good place to start acquainting yourself with how to live long and well with CLL healthunlocked.com/cllsuppo...
As you've begun to appreciate, CLL brings with it a compromised immune system that generally worsens over time. Hence the pinned posts most relevant to you are probably these:
Masks work best when they keep those with infections from passing them on, which is why a well fitted N95/FFP2 or better is preferred. Unfortunately, people developing infections can be asymptomatic and contagious prior to, during and after their infection. It all comes down to your acceptable degree of risk and how well your business will continue to run if you need to take time away from work to recover.
You might be well advised to look at improving your office ventilation as well as where you sit in restaurants or perhaps going when they are less busy, or even bringing your own lunch from home, or purchasing one to eat at work. You could also look at how you can encourage your staff to pay more attention to hand washing, etc.
Finally, when you next see your haematologist, ask about your immunoglobulin /antibody counts (IgA, IgG and IgM) and your neutrophil counts, as these will give you a rough indication of your degree of immune compromise. Your best indication is how often you become ill, how long it takes to recover and what additional antibiotic and antiviral support you require.
thanks. will ask my haematologist about my antibody coûnts. It's a good idea. Doctors dont like to be challenged or disturbed too much so hopefully mine will be cooperative.
Masks (well fitting N95 equivalent or better, properly donned and doffed) also protect the wearer, and two way masking (where all are masked) provides added layers of protection…
The replies by AussieNeil & Spark_Plug are excellent, and I add the ideas below for your ongoing reading & information sources instead of using Dr. Google:
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Welcome to the club that no one wants to join! But we’re here for you!
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If you are reading this letter, you or a loved one have just been told that you have CLL/SLL or chronic lymphocytic leukemia/small lymphocytic lymphoma, an incurable but mostly highly treatable cancer of the B cell lymphocytes. B-lymphocytes are a type of white blood cell that works to protect you against infections.
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We know that it's a scary and confusing time. Still, we're confident we can help ease the fear and confusion by giving you a few steps to follow to make your journey with CLL/SLL easier. So check out this welcome video here.
Unlike many other cancers, you will likely have time to digest the news and learn about your disease before starting treatment – that is, if you ever need treatment. Roughly one-quarter to one-third of people diagnosed with CLL/SLL remain treatment and symptom-free.
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First, you should gradually assemble your CLL/SLL "team." This team is a whole gang of people to support you through this "new normal" you face. Who are the players on this team? This worksheet will help guide you in assembling your CLL team.
An important player on your team is a dermatologist. Because of our weakened immune systems, people with CLL/SLL are at greater risk of developing skin cancer. Vigilance matters. A full-body skin checkup, annually if not semi-annually, is essential to discover any suspicious skin lesions that may arise, such as a mole that doesn’t look quite right before it has a chance to become malignant. Between medical skin checkups, have someone check your back for you, as that area is difficult to see yourself. Oh, and remember your sunscreen!
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Pursue a healthy lifestyle. While there is no absolute consensus on what constitutes a healthy lifestyle, eating fresh, unprocessed food and regular exercise are among the habits that can improve your quality of life and survival and help ward off other comorbidities. Keep current with recommended health screenings: physicals, mammograms, colonoscopies, etc. Ensure you are up-to-date with your immunizations (ex., Prevnar; Pneumovax, Shingrix, annual influenza, COVID-19). Important: CLL/SLL patients should never receive live vaccines. To help you prepare should you become infected with COVID-19, please see our COVID-19 Action plan here. cllsociety.org/2021/07/covi...
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Most people diagnosed with CLL/SLL can't resist going onto the internet to learn more about their disease. This can be hazardous and feed anxiety as many websites contain unvetted or out-of-date (“looking backward”) information. Breakthroughs in the treatment of CLL continue to evolve at an impressive pace. Novel, non-chemo drugs have been developed with increasingly fewer side effects and are highly effective at controlling, if not reversing, disease. Clinical trials are constantly opening with new drugs, drug combinations, and cellular therapies. As a result, people with CLL enjoy longer and better lives with CLL/SLL than ever.
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CLL Society offers reliable, physician-curated, patient-friendly information and resources. It includes basic information, deep dives into specific topics, video interviews with top CLL researchers, real-world advice, clinical trial information, and more.
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Sign up here cllsociety.org/newsletter-s... to receive the CLL Society’s weekly emails to ensure you get the most up-to-date information.
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Here is a small sample of what CLL Society offers:
• Don’t underestimate the importance of a CLL/SLL support group and network.
Our patient-led support groups provide a supportive and educational peer-to-peer environment. We have almost 40 CLL/SLL-specific support groups across the United States and Canada. You can find the link to a support meeting near you here. cllsociety.org/cll-specific...
• Our Patient Education Toolkit contains various CLL/SLL-specific educational materials for doctors and patients. cllsociety.org/cll-sll-pati...
• The CLL Society’s Expert Access™ Program pairs qualifying CLL/SLL patients to connect with a CLL/SLL expert via video consultation in this free, HIPAA-compliant, second opinion program. cllsociety.org/cll-society-...
• CLL Webinars invite CLL/SLL experts from around the world to discuss new therapies, trials, and the disease itself. These webinars are live or can be watched after they have aired.
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You are not alone. CLL/SLL may be incurable for most. Still, many patients enjoy a normal, healthy lifespan with the proper care and support. CLL Society is here to help educate and connect you to experts and patients like yourself. The more you learn about your disease, the more you will be able to work with your doctors to help make the best decision in the treatment for you. CLL Society believes in our motto: Smart Patients Get Smart Care™
thanks lankisterguy. fear is often based upon irrational thoughts . at least in my case it was. got to say your reply helped in mitgating the situation.
Gnip Gnop, as you may know already, cll is a blood cancer. More specifically it is a cancer of a type of white blood cell known as a lymphocyte. Lymphocytes are the white blood cells that create antibodies to fight infections. Because many of our lymphocytes are defective, we do not fight infections as well as the next guy, hence we are all considered to be immunocompromised to some degree.
Our immune systems are very complex and we do not rely totally on lymphocytes. We all have varying degrees of being immunocompromised. People in early stage cll or people with more indolent cll might not be immunocompromised to the degree it makes much difference. While some of us get frequent infections, some others get along pretty good and have enough immunity to live relatively normal lives.
I have had cll for 7 years now and am treating with an oral drug called acalabrutinib. I wore a mask through most of covid when around others. I don’t wear one much at all now. I did get covid, but my body stood up to it just fine.
If I start getting frequent infections, I will likely mask more and avoid crowds. As of now, I’m back to going to live football games and out to eat without masking.
As others have said, it’s a personal choice. If you are in early stage cll and not having frequent infections like colds and stuff, you might do just fine not masking. It can be a trial and error thing.
There are different genetic varieties of cll as well, some types of cll grow very, very slowly and are not much of a threat to their hosts. You might ask your doctor on your next visit if he has run tests to determine what type cll you have, ask him if your Cll appears to be slow or fast growing, and seek his opinion if you are at such an infection risk that you should mask and be more careful around others.
Like I wrote, I taking my chances now and not masking. If I start getting frequent infections, then I’ll probably mask more. Good luck to you.
Ty cajunjeff. guaranteed I'll be asking about the type of cll I have. in fact there is some family history of mine that needs to be taken into consideration. my dad passed away many years ago with dlbcl. it was sudden ,aggressive and unrresponsive. to treatment at that time. I already mentioned it to my doctor as something to watch out for with respect to the review of my case.
Hi. Sorry to hear of your diagnosis. It's a shock, and, as you are aware, there's lots to assimilate. Information overload can be fatiguing and confusing. You say you take it one day at a time, and that's a healthy attitude. Try not to be scared. Many people with CLL live long, healthy lives. I've been on watch and wait for five years, and my quality of life has not deteriorated. Lots of friends here to help you and answer your questions, so please don't hesitate. Keep us up to date with your progress. Take care!
thanks Guffy. for sure I will let you know of my progress. I am optimistic. From what I can gather the médical landscape has improved exponentially in the last 20 years in the tackling if this disease.
Do a search on salted mask. I like to make my own salted masks and based on what I read, it makes me feel like I have an additional level of protection from bacteria. Masks are very good to wear especially around little kids who tend to cough loud and without covering their mouth to show their mom the cough and get attention. Your mask protects you against virus, fungi, and bacteria so if people tell you their coughing is okay and not to worry they don't have a virus, yes you still have to worry about the fungi and bacteria. You don't have the same immune system.
I'm sorry you got this crummy news, but there are good things about it. For example, you will be forced to take better care of yourself. And you will find the people around you are even more precious, and you will want to take better care of them, too. In my view, wearing a mask during covid outbreaks is just a simple but powerful way to take care of both ourselves and others. It would be lovely if we could feel good and just throw them away, but I've learned the hard way that that would be premature.
While traveling, I recently caught Covid in spite of usually being masked. Being human, I yield sometimes to the temptation to be like others, and I took my mask off when the food came in restaurants, when talking with my cousin who was in a hospital bed, when walking outside, when cheering for my nephew in a theatrical produciton. But in the hospital where my cousin was being treated, few peopIe wore masks, even many members of the hospital staff including doctors and nurses went around unmasked. I wore my mask in and out and in the hallways and out and about, but still, sometimes not. Someone who was sick did not mask. Now I am sick with covid for the second time. Wait, there's more.
I passed the covid virus to my sick cousin before I left for home, and she passed it to her brother when he came to help her after I left. I feel so badly about this. I wish whoever gave me the covid had not done so, had stayed home or at least worn a mask. And I wish I had not passed the virus along. I am still a little under the weather after some weeks. Now I may have to miss the memorial service of an old friend. And I am worried about my cousins.
So in my view, we need to consider not just our own health, and not just the normal concerns about passing Covid to others, but that, when we do get sick with covid, we take longer to clear the virus. The virus goes through more replication cycles. It is more likely to mutate. We really need to keep from getting this virus if we can.
ty mddp7. sorry to hear about your 2nd covid infection. That is never welcome. From the sounds of it, you cannot blâme yourself for the passing of the virus to your cousin. most likely she caught it like you from someone in the hospital. they are breeding grounds for virus transmission.
thanks for the sound advice especially the deep dives into dr. Google. unfortunately I was guilty of that sin. couldn't help myself I guess. will lock my post next time . just got to figure out how to do that.
Hi. Welcome to the family. It's a lot to take in upon diagnosis. Theis forum is the best place for advice and support. I was diagnosed in 2015 (on my 55th birthday). I have catalogued my journey here warts and all please feel free to browse and I hope it is of help. Stay positive, stay strong. Best wishes.
We have never stopped wearing our masks. Always in shops and if there are groups around. We are still restrictive about having people in the house. Covid19 is such a concern for us. I am to actually see my consultant for the first time in three years in the next few weeks. She has telephoned me,preferring not to risk me being in hospital. However I wouldn't be surprised if she reverted back to the telephone after the news of more Covid19 being diagnosed. When I was first diagnosed in 2018 I was advised to live as normally as possible and to have any vaccinations offered.
I’m going to “e-cycle” a reply I wrote to another person (not quite a month ago), on the subject of masking:
(Broken into parts due to HU character limits in replies.)
At this stage in the pandemic, I have come to realize that SARS2 (aka Severe Acute Respiratory Syndrome 2, SARS-Cov2, covid) will always be with us. For that reason— and several others I detail below— I will continue to wear a well-fitting N95 or better mask whenever there is the potential to “share air” with a non-household member. Indoors or out, as SARS2 can be transmitted outside in a matter of seconds. (At one time it was mistakenly believed that it didn’t spread outdoors. That hasn’t been the cases since delta).
The pandemic is not over. WHO has not yet declared the pandemic over. Many countries have ended public health emergencies, with the untoward effect that people think SARS2 is over. Or perhaps that was the intended effect.
SARS2 is still classified as a BSL3 level pathogen. Full PPE required if working with it in a lab. But dealing with it in the office, on public transportation, going in for a follow up appointment, well, meh.
The virus that causes SARS2 is airborne. It moves like smoke and can linger for hours in the air. I’ve read it can linger in the air for up to 16 hours. That empty room that seems safe because nobody else is present may have had someone who’s is positive breathing virus into the air 2 hours ago.
The messaging regarding SARS2 has been abysmal and misinformation abounds. The minimization of SARS2 has reduced the virus to a sound bite of “it’s just a cold.” It is not. Many still believe the early, but false, messaging that if you were vaccinated you couldn’t spread the virus. You can. In the US, the reduction of isolation time by the CDC to 5 days when most were still infectious at 10-14 days and beyond, confused matters more. People are going out into the community when contagious because “it’s just a cold.” People are going out into the community when contagious because there are still cases without symptoms (though tissue damage from SARS2 can/does occur). People are told to come to work sick (even in healthcare settings), parents are told to send their children to school when sick. People have already exhausted sick leave and, from a financial standpoint,can’t stay home. Very few are masking. So SARS2 is out there and spreading even more.
Few are testing (exceptions follow), and even so, the reporting of positive cases (of the few who are testing) is no longer happening. Hospitals are no longer required to report cases. In the US, reporting went away around the time the public health emergency ended. It’s very hard to determine one’s own risk in this new “public health” paradigm, when the information to do so isn’t readily available. About the only good measure these days is in wastewater and that shows cases are ticking upward.
Back to those testing exceptions— Recently a number of Israeli delegation members tested positive while visiting the US and having meetings with President Biden. The press secretary pointed out that there was ongoing testing protocols for anyone meeting with the president. Leading one reporter to ask, “We’re not in danger though, right?”
The press secretary laughed and moved on. But we are in danger. Even the CDC has stated that 1 in 5 people who get SARS2 end up with long covid. Repeat infections increase those chances. A recent preprint outlines that SARS2 causes tissue damage even for those who were infected but had no symptoms.
I know the president has said in the past that he doesn’t think about covid anymore. It must be easier to not think about it when there are testing protocols in place.
Earlier this year, at the WEF in Davos, attendees were PCR tested onsite and their access badges were automatically and immediately deactivated upon positive test results. Masks were available, staff were masked. They had HEPA filtration / increased ventilation and real-time air quality information available. It has been speculated they had farUV available as well. The hashtag #DavosSafe resulted from the detailed precautions taken.
Most of us are on this forum because we, or someone we know, have CLL, a b-cell blood cancer. In and of itself, that puts us at a higher risk for severe covid/dying from covid. If you’re on an ongoing immuno suppressive treatment with something such as a BTK inhibitor, that adds to your risk. Are you vaccinated? Great! But with being in the blood cancer *and* on an immunosuppressive treatment, did you happen to test to see that the vaccine seroconverted? Did you get actual antibodies from the vaccines? I tested and I did not get antibodies post vaccine. So I’m vaccinated but unprotected. I’m not one of those vaccinated who will have a less serious outcome due to being vaccinated because my immune system identifies as unvaccinated.
There is more that we don’t know about post-SARS2 sequelae (strokes, heart attacks, organ and tissue damage, long covid, etc.) than what we know. And a great deal of those unknowns will likely not be known for years. For me, I have enough health issues already to contend with. I will do what I can to reduce my risks as much as possible for as long as necessary.
It was was almost surreal going in for lab work the week universal masking was lifted at my clinic and hearing unmasked staff tell people that they didn’t have to mask. That masking “was recommended, but not required.” Since when has “recommend but not required” resulted in folks doing the recommended?“Son, I recommend you take out the garbage, but it’s not required.”
I had opportunity to ask the chief quality officer and MD at one of my local HMO’s about the lifting of universal masking. They had made a big deal about masks still be needed in certain areas on behalf of vulnerable patients, but to get to those areas, vulnerable patients had to walk through reception areas, hallways, etc, where staff, patients and visitors weren’t wearing the “recommended/not required” masks. This was a phone in segment on local tv and his response was that the chance of picking up covid in the hallway was not very big. But my thought was shouldn’t the focus be on reducing the risk as much as possible for those who are vulnerable in a setting where we don’t have the luxury of opting out?
Often people’s take away here is that if their HCPs aren’t masking, it must be safe. Many are silently wondering what the reporter asked aloud: “We’re not in danger though, right?” When seeing no extra mitigations, no masks, it’s easier to presume there is no cause for concern.
The risks were reduced more when there was two way masking. I’m not quite sure why the big rush by hospitals and clinics to abandon universal masking.
It really hasn’t been all that long on the continuum since hand washing between patients became a universal medical practice. It was very controversial at the outset.
Other health measures that took a long time to gain traction included a push for clean drinking water. Now we need to push for clean air. Upgrading buildings’ air handling capabilities/ventilation is expensive, but not doing so is costly.
Looking back, not washing hands between autopsies and delivering newborns, or between patients in general, not having waste handling systems or clean drinking water seems barbaric.
Perhaps one day, this time period will be viewed similarly for the lack of universal masking, and lack of clean air.
TL;DR: I will continue to wear a well-fitting N95 or better mask when I need to interact with others in public.
I too, am recently diagnosed and living in Toronto. GnipGnop- I hope you have a supportive CLL team. It makes the world of difference to your emotional well-being. This site is outstanding also. So much good information from experienced CLLers.
You asked my question. I've been struggling with when to mask now that Covid is on the rise.
The information out there has gotten confusing. Some are now saying that the mask really did nothing. I find that can't be totally true. Some blockage between our breathing in and out, as Asian countries have done for years, has some credibility. But with CLL, we have to be extra vigilant. I have seen a few people still wearing masks. I am not terribly worried about it now, but maybe I should be. It is definitely a personal choice. Talk to your doctor abut it. Welcome to this group.
thanks. I too believe masks help reduce transmission. I have used masks in the past and still do. not religiously though. I never contracted covid. Got my fingers crossed.
Sadly, the use of masks became politicised with the immune compromised folk the losers. How the world basically had no flu seasons in 2020 and 2021 illustrates how just taking basic approaches to reduce transmitted virus loads into your body, can reduce the risk of respiratory (and other) infections. Mask wearing, good ventilation, social distancing, hand washing all contribute.
The best evidence indicates that community mask wearing may have slightly reduced transmission during the pandemic, but even that slight reduction saved lives by reducing overloading in hospitals, as well as reducing COVID infections and deaths among staff. Given the poor adherence to using masks, plus many using cloth masks or significantly better surgical masks, which are inferior to respirators, that's not surprising. The introduction of a mask mandate was credited for ending Melbourne, Australia's long lockdown: healthunlocked.com/cllsuppo...
With the physics showing how pathogens are blocked from entering your respiratory system, you don't need a clinical trial to prove that correctly wearing a well fitted respirator can protect you from illnesses spread through the air you breathe.
GnipGnop, yep, we all have had our lives turn upside down with this diagnosis and then the Covid in the air. I carry my mask everywhere, but only wear it in a crowded room or store. I do more mail ordering. I'm more relaxed now than when this first started. Some of my doctors requests masks worn. I strive to stay on my toes to keep healthy and sometimes that means to take an afternoon nap to rest the tired body. I've never had to do that before. I rarely shake hands now, too. I'm in W&W 4 years and never had treatment. I have been "introduced" to "shingles"! 3 minor outbreaks (thank goodness) in 8 months. Haematologist has me on 1 valtrex tablet per day now as a precaution to diminish my chances to have another outbreak. I'm 74 and my WBC is 106. It goes up and down, other bloods are not perfect, but not awful either. Ask all the questions you want. Someone can share their experience on this CLL journey with you. That's how we learn. 🙂 Sandra
thank you Phil4-13. Kudos staying healthy. I kinda employ the same approach as you do with respect to masks. I have t2 diabetes so I have been careful in the past trying to stay healthy and avoid getting infected with covid (getting my vaccines. minimize meeting people in close quarters etc.). masks however I have been less vigilent and tend to employ them ad hoc. I think this will have to change on my part in light of what I am now facing. I have had a vaccine against shingles when I was first diagnosed with diabetes. I hear they are extremely painful. No garantee I won't get them though and wish you a fast and healthy recovery.
Since you are Canadian, you may be interested in Canadian resources along with the excellent recommendations of Lankisterguy. CLL Canada has an information and resource center on it's website, with links to reliable, quality information to answer the questions that typically arise at each stage of the CLL journey cllcanada.org/cll-informati...
For support resources, such as support groups and peer support, check out the Leukemia and Lymphoma Society of Canada bloodcancers.ca/ and Lymphoma Canada lymphoma.ca/
I treat my mask as I treat my umbrella with respect to rain. When in the rain, umbrella up. When around others, mask up. I do go to restaurants with a few friends but I get the choice of seating and I remain masked until food arrives. I look for ceiling fans and try to be under one. I am responsible for me and I offer no excuses for wearing a mask. The N95 video above was great at showing us how effective the mask can be.
Dennis, 76, Venetoclax and just completing obinituzimab
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Mask anger
My GP just said something about CLL and Covid
Suitable mask for pollutants & pathogens
Open letter from cancer charities to the public regarding vulnerable members of our communities in UK
