Not sure but, I think this is pertinent to this forum. Had two years of BTKi treatment. Beeen off of treatment for 18 months, doing ok. Immunoglobulins are low but IGG higher than usual on last blood draw. Usually IGG low 400, now 530. Realize I am still immune suppressed. Realize this is a question for MD. But would like some real world information from people with CLL.
Recently, after 3 years staring going back to the gym. Wearing KN95, washing hands with hibicleans disinfectant soap afterwards. Thinking about upgrading to N95.
Am I playing with fire? Am I crazy? After 3 years cannot stand it anymore. I need some normalcy. Debating if this is worth the risk. Any thoughts would be welcome.
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Davidcara
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Definitely keep up the masking and hand hygiene, if possible go to the gym at a quiet time or if you can as soon as they open when the air is likely to be at its cleanest. Just my thoughts, sure someone more scientific than me (which isn't hard!) will have a more informed opinion. Incidentally I wouldn't shower there, wait until you get home. Also I wouldn't spend longer there than strictly necessary, try to avoid others as much as I could, especially anyone coughing. It's a balance, you have to decide what gives you the best possible quality of life whilst also trying to stay safe. We all have different comfort zones.
Are you up to date with the recommended vaccinations for us? healthunlocked.com/cllsuppo... haven't mentioned your neutrophil count. Neutrophils provide your primary infection defence. Also, how often do you get infections. How severe are they and how long does it take you to get over them? Blood counts are only one indication. Irrespective of how good they are, with CLL, you are still immune compromised, so you'd be wise to wear a well fitted respirator. I expect you don't have a reliable measure of how much COVID-19, flu. RSV, etc is going around where you are?
ANC runs 2.3 to 3.5 or so. Finally made antibodies after new covid vaccine, greater than 25,000. Not a lot of infections. But took weeks to clear July 2022 covid infection but, now off BTKi. My T Cells are not great. I am definitely immune suppressed from CLL.
I know it is risky. But really, just cannot take not doing anything anymore. Maybe bump up my KN95 to N95. Was just online looking for home stationary bike. But really the gym has everything I need except the potential viruses and bacteria.
I think the response to the COVID vax is very encouraging.
KN95 vs N95 - neither is inherently better. Search YouTube for Aaron Collins. He's an engineer who tests masks and publishes results. In particular, he rates them on breathability.
Get some disinfectant wipes for cleaning the machines.
AssieNeil When you say neutrophils are primary infection defence, I wonder which you are referring to? I have a neutrophils ABS auto which is in range but I also have Neutrophils %auto which is way below the normal range at 10% to 25% (rather than the normal range of 40% to 80%). I am a novice at understanding which is important, but I have been on watch and wait for decades with Kaiser health. No one has explained these things to me at Kaiser, they just keep me on watch and wait. When should I expect to get some action out of my health provider? Can you refer me to some easy to understand posts to read so I am not just an ignorant watch and wait person? I have not had any treatment for CLL at my health insurance other than blood tests. I was overwhelmed by variety of results of my blood tests, since I basically don't know which parts are important, just that some ratios of white cells are way off normal. Any suggestions?
Tennis-dog, it's the absolute number of neutrophils that's important. Ignore percentages, or you'll get misled. (With CLL, because the total of all percentages must, by definition, sum to 100, when our percentage of lymphocytes increases, that has to force down the percentage of other white blood cell types, including neutrophils. See healthunlocked.com/cllsuppo... )
There's an extensive section on living with neutropenia at the end of this post.
Are you gonna exercise regularly if you don't go to the gym?
Are you gonna be happy with that regular exercise compared to exercise at the gym?
Everything in CLL is risk/reward. It sounds like you already have made up your mind that the reward is starting to be worth the risk, so I'd follow a few posters' suggestions and just try to minimize the risk as much as you can while you enjoy the "reward."
Always struck me as ironic, that people drive to the gym, rather than walking, jogging or cycling
David,
Perhaps establishing a habit of regularly going to the gym helps with maintaining fitness that you wouldn't otherwise do, but there's much you can do to maintain your fitness in everyday life without gym attendance.
I have neuropathy so legs do not work so great. The equipment at the gym is what I really like and benefit from. Been through PT and home exercise and all of that. Just self doubting myself. Thinking am I crazy, is it just me, do other people think this way?
I was going to the gym with CLL before Covid. But now Covid has changed everything. Although the non Covid risk are still there too? I’m not sure? I’m going to upgrade from KN95 to N95, see if I can even breath through it while working out without passing out.
Hi Davidcara , we use a nasal - throat spray ... it is clear iodine - and wash our hands ,credit cards , keys , door knobs ,,etc. with a mix of 50/50 distilled water and hydrogen peroxide . ...and try never to touch our face....until we have thoroughly washed ----- i have CLL and am on O+V treatment but i go shopping with my wife and i drive for my vacations .. NO planes ,,,i got home a week ago from a 4,070 mile round trip to baja ,mexico ... soaked up some sun ,went snorkeling , paddle boarding ,shopped never wore a mask .. they pump the gas for you .. i never went in a restaurant either ...had a camp stove and bought food in the supermarket .but washed my hands often .. opened doors with my shirt sleeves or tales . i do whatever it takes to not touch things that others have .. but i also take vit. C-D-zinc probiotics and a plant based diet and use the sprays when ever i have been around anyone ... my wife goes to church and uses the spray , and is super careful, but i do NOT ... i stay away from crowds , for exercise i walk , ride my bike , swim ( we have our own pool ) , and work on my farm .. i am not vaccinated either ... at one point in sept . 2022 my neutrophils were .15 .. i was VERY careful then ...i had to have a shot to bring them back up before i caught something bad ...... by the grace of God i have not been sick in over 3 1/2 years .. ... i would not go to the gym if i were you unless you just resigned yourself to the fact that you are going to catch something and you are willing to take the risk or just deal with whatever you get.... i am pretty amazed that some of the members on the forum have not produced antibodies from being vaccinated and boosted . ,,, got covid and survived .... so none of us know how our immune system is going to respond to the crude ... i would definitely go in the morning as others have suggested .... were gloves that you can disinfect later ,,, and never touch your face till you have cleaned yourself well... church ,, the gym and a plane i would think would be the most likely super spreader events ... i am hoping the best for you .. i hear your frustration loud and clear .. that is why i went to baja ... it was great . a lot of driving but worth it .. i saw at least 1,000 fish . osprey and pelican fishing .. fantastic sunrises 🙂..... keep looking up and stay safe , blessings , james
I don't think you're mad, I think from what you've said that you need the gym for both your physical and mental well being. Do what you can to protect yourself, definitely clean down the machines before you use them and wear a mask if yo can cope with it but otherwise enjoy it and try not to worry.
Neil, I am on the HIT programme so go up to the Surrey Human Performance Institute three times a week. I TRY to cycle there rather than take the car but when it is p***ing down with rain........... well, you get the idea. Incidentally, Dr Bartlett and Ellie Miles are doing a webinar about the HIT programme on 11th December at 10.30GMT and a second session at 12.30GMT on Zoom. The CLL UK site has details.
Winter is coming so I run on the track at the health club instead of outside more and more often. I go when they first open at 6 am and not busy at all. I don't wear a mask because not really near anyone. I don't use the weight room. So far so good.
I tend to think, with no science or expertise to back me up, that our immune systems are complex and not always a function of lab tests that just measure one aspect of our immune system. It seems to be a very individual thing.
I have been more and more testing my limits. So far I have not been prone to frequent infections. I did get covid but my immune system held up fine. There are some redundancies in our immune systems.
The first person to go to with this question would be someone’s doctor. We are all so different with our cll and universal advice often doesn’t apply.
That said, my thought would be that if you have done well the last few years and have not had frequent infections, I would venture to the gym, restaurants, etc. I have learned to avoid face to face conversations as best I can. There are still some “close talkers” who don’t really get personal space and have to get nose to nose to talk to you. I turn my head and find ways to disengage. I have managed not to embarrass anyone so far and say back the frick up, I have leukemia and I am a germaphobe now and you are too close to my face. Lol
Is a question of balance, as the moody blues might sing. We want to be safe, but not give up life. It’s a no size fits all answer. My approach has been to test my limits. If I get a cold, no big deal I hope, I used to get them before cll. If I get frequent colds or infections, then I have to take more precautions, trial and error if you will.
I have recently resumed going to NFL games and did so today. That was a big mistake. Not because I got sick, but rather because my team sucks.
My team, the Patriots, need a complete overhaul!!!
I limit my risks. There is a restaurant near by that have heated igloos to dine in. That’s the only place I go in the winter months to eat. In the warmer weather I eat at outside restaurants. I have been back and forth about my local gym. I am moving next year into a bigger home and will probably set up a home gym like CoachVera. I limit my risks and always wear in a mask in crowds with the exception of outdoor festivals. I haven’t been sick in many years and I’ve been on Acalabrutinib for a year. I actually envy people that give no thought to protection and live a “normal” life. I try to have acceptance regarding my vulnerability. I have good friends and family that are supportive and know not to be around me when they are feeling ill. Continue to do risk assessments and make decisions that work for you. 😉
Katie, maybe it’s just a matter of semantics, but I like to think I do live a pretty much normal life now while at the same time being aware of my possible increased vulnerability. It’s a lot of simple things I do different than before cll to avoid infections
For instance, when I play golf, I ride alone. My club has a policy that carts should be shared but since I have my own, I am exempt. Even if I did not have my own cart, I am very certain that my club would give me the privilege of riding alone if I explained my leukemia situation.
I’ve really gotten good about keeping my distance from others and avoiding face to face contact. If I go out to eat, I’ll find the best seat I can at the table. If my grandbabies are sick, they dont visit me and me not them. My children all know about my leukemia and know to stay away when they have a cold or something.
As I wrote above, it’s not a one size fits all. Some of us are much more immunocompromised than others and need more protection. Some of us are maybe naturally germophobic even before getting cll. My roommate in college brought his cup to drink from when we barhopped. Lol.
I think the fact you have had no illnesses over the past years is great and I am sure at least partly due to the precautions you take. I also suspect you may have a more intact immune system than you think. Germs are insidious and cant be totally avoided no matter what precautions we take, unless we literally live in a bubble. Surgeons wash up, wear masks, use disinfected instruments, yet some people still get infections in surgery. I suspect you and I as well have been exposed to germs and somehow not got sick. Severely immunocompromised people can get sick just from some otherwise harmless bacteria that’s always in their environment
We dont depend solely on antibodies to protect us, we have other types of immunity that can compensate. There is possible good news for you and me both on acalabrutinib. Some studies have shown ibrutinib can restore some immunity. Its not as clear that acalabrutinib also does, but it’s reasonable to think we might get some immune benefit since ibrutinib and acalabrutinib have the same mechanism of action.
To my understanding, some people can have very low antibody tests, but their doctors will still mot prescribe ivig unless they also have recurrent infections. Its a really good sign for you that you have been infection free so long.
I agree with your conclusion, do risk assessments and make decisions that work for you. I would add to that, make decisions that you are comfortable with and achieve your own sense of normality. I have gradually tested my limits for the sake of more normal, I guess. I got over covid quite easily. I have all my vaccinations. I would like to think that if I get a cold or flu that it will run its course. If I get colds and flus and such that dont run their normal course as before, then I will ratchet back my social activities. And I like the idea of a home workout space, I just prefer that to a gym anyway. I hope you (and me) continue to avoid sicknesses.
It’s kind of like when I asked my doc if I have restrictions with my sore back. He said try to do what you can, and stop if it hurts.
As a CLL 3 year W&Wer who enjoys going to gym (on my bike in the summer, but winter is here n it’s snow-city so drive it now), I concur much with Cajunjeff’s reply to your gym question.
A risk? Of course, but it’s a personal decision based on a number of factors n definitely do get doc advice regarding your situation etc.
For me (and my wife), we both go to gym often now that Covid has simmered where we live n to be honest we’ve been doing a lot of “getting out” in 2023 unlike the hot Covid years before.
Not only to out to the gym, but also to restaurants, sporting events, concerts, n other crowded venues. Plus added jet travel too! Call us crazy (both my wife n I have cancer) but as you noted n IMO it would reaaaaaly drive us crazy to be in lockdown mode. Besides life can be “short” unfortunately … n hearing the words “You have Stage 4 cancer” has a quick way on readjusting one’s thinking about life n the importance to enjoy it the best one can with the ones you love via shared experiences and time with them.
Sorta preaching (sorry) but when one hears their spouses time left on earth is likely short you get a whole different outlook on life what’s important and well Covid worries masking (or not) can be important for us living life as nearly normal as before Covid trumps the risks … n so far that mindset and living less on fear is working for our situation.
But … (always is one right?!) not totally against taking precautions (e.g., masking, etc) … we still mask at our cancer clinics visits n during doc office visits n also during airplane travel, but … on the other hand have non-masked about everywhere else including the gym. Our Planet Fitness gym we use has 24/7 hours n we are retired, sooooo… we can go when very-very few are there.
By the way good to hear you have >25,000 U/ml max spike antibodies. I think that’s helpful for protection against Covid. Not the end all but helpful. It’s helped me (so far).
Hope you stay Covid free ahead. Good luck on your gym decision.
I’m 19 months off treatment after a major side effect on Ibrutinib. People refer to me a PR as I still have CLL circulating but I don’t not have B Symptoms at this time. Since being over treatment I have not had a single virus, no colds, no flu, no Covid. I am still plagued by bacterial infections in my toes, from insect bites, and had cellulitis at vaccine sites. For me, I am just living my life and not allowing CLL to make decisions for me. What will be will be….
I require exercise for not just my physical fitness but for my mental stability so I invested in a Homegym. Its a non negotiable & I can’t take any unnecessary risk. I would be scared of a N95, shoot I can’t breathe in a KN95. I wish you well though since all the choices are hard🙌🏾
If I could put a pool in my house I would but I’m not at that stage of life yet! I just missed the pool at the gym so much that I recently went back too. I have got poorly yes but that could equally of been from my workplace. Do I regret going, yes a bit but it did feel good jumping in the pool after all this time.
I train at home, doing bodyweight exercises. Push-ups, pullups, V leg raises and dumbbell lunges. Never thought about going to a gym wearing a mask. Doesn't it feel awkward? Is it the training or the community that's important for you?
Hi David. I was on watch and wait for many years and recently started treatment. I go to the gym 3 times a week and try and live a normal life as possible. Yes I avoid coughers and sneezers but am a firm believer in staying positive. Staying fit is more important to me than staying in.Keep strong and good luck.
I live in a very small town and go to the gym when hardly anyone else is there (maybe 5 at the most in a huge building). I wouldn't want to go when it's crowded. It makes me feel better to get some strength exercises. Good luck!
Once Covid hit, I quit my regular routine at the gym and started doing more walking. Minnesota weather extremes sometimes limit this. I am dragging my feet on going back to the gym but will likely do it soon. I will mask and won't shower there, follow distancing and other precautions. This past year I have been resuming more activities- small gatherings, restaurant, short out of towners and am on our first big road trip since March 2020. Always mask in public, even in some outdoor settings, as I heard the latest strain spreads outdoors. Appreciate this post and all the comments!
As a fellow gym rat i completely understand. A few thoughts:
Suggest buying a CO@ monitor( eg Arnett 4 from amazon) less than 200 dollars. This monitors CO2. So outdoor air about 400-500PPM, Indoor, maybe 6-800. Instructive to see it climb to 1800 PPM when in a crowded indoor space.
So, whats the big deal? Well all that indoor air comes from people breathing, we are CO2 pumping engines, the CO2 in expired air is 30 or 40%, less than 1% outdoors. So that 1800PPM, means we are sucking in air expired by others. Also mental cognition declines aroiund 1300 PPM, really takes a hit above 1500 PPM.
So now we can understand how whole choirs got covid, how some of us feel unwell, or get the flu after a plane trip.
Fortunately, there is body weight exercise, calisthenics, pull ups, push ups, running, endless list, which one can engage in outdoors.
If nothing else, do wear N95 masks when working out in gym. Even a powered air filtered mask.
I have been a Health Club member (it is. 2 .5miles from home; so I drive there) since c2001 (it has gym ,pool & spa area) When I was working I used to go about twice a week. I was diagnosed with CLL in Jan 2020 but have continued with gym & swimming apart from when it was closed during the pandemic.
I retired in March 2022 & now go for either gym workout or swim & spa. (sauna, steam room & jacuzzi) at least 4/5 times a week in quieter daytime periods. I also play a round of golf around once a week. I wipe down gym equipment before & after use with the anti-bacterial spray & paper towels that are supplied. I am on W&W but have been informed some sort of treatment is on the horizon.
I take the view that quality of life (whilst I can still enjoy activities) far outweighs restricting yourself because of your CLL.
Hi David, it is very much a personal decision, and you obviously have done your risk assessments,
I have anguished over this issue too, not so much involving a gym, as I stopped doing that many years before I was diagnosed with CLL.
Whilst it's important, for many of us, to mix socially, if you do so in a 'Gym Setting', there is a higher risk, given our compromised immune systems.
However, the importance of exercise, for CLL'ers cannot be understated. Personally, I decided to 'Go solo' thereby minimising the risk factor somewhat.
I hope everything 'Works Out' well for you, (Pardon the pun'.😀
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