Background: diagnosed January this year, started O&V February, it's gone very well so far - feeling back to my old self, blood counts have been excellent for ~ 6 weeks. On full dose of V and Neutrophils around 2 - I think will improve as my marrow seems to be recovering well.
I'm 49 and WAS in excellent health before all the infections which put me in hospital and led to the surprise discovery of my CLL!
So I'd love to get back to exercise, I think it will help my recovery. But obviously gyms and swimming pools are risky. I have checked and the club (David Lloyd) seems to do a good job at cleaning and ventilation. I know when it's quietest. I can wear N95 mask and reduce the risk in other ways.
But the question remains ... am I being cautious enough, or is it a fundamentally stupid idea to take the risk while still on treatment?
I realise this is a personal choice, but would still really appreciate others thoughts and judgement!
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Greenbunnies
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I’ve gone to gyms for decades but not since diagnosis and definitely not since COVID appeared. I enjoyed the classes and yoga especially. Now I exercise outdoors only. Sure miss the yoga though and camaraderie. Personally I’m not ready to chance getting all the bugs and it’s spring here in the US which helps.
I am right behind you with O & V treatment. I start 400mg in less than two weeks.I went to health clubs since my 20's and always loved them. Would I go now? No way!
Reason is, a Health Club is just too risky. Too many other peoples body fluids all over EVERYTHING.
We do not produce antibodies for probobly a year after treatment. Just too much risk for me to take. I have exercise equipment at home. Plus there is the great outdoors.
I have always loved the clubs. Weight lifting, racketball, steam room, cold plunge etc.
Loved it, but I prefer to stay alive. There are a lot of antibody resistent Super bugs around. I would prefer not to play russian roulet with.
Okay, so you're in your 40s and daily exercise will be crucial for your long term health.
So, since your neutrophils aren't incredibly low, the 2 questions I ask - if you can't swim, will you exercise daily? And if you do non-swimming exercise daily, will it avoid being a stressful drudgery and be still almost an enjoyable as the swimming?
If you answer no to either of those questions, I would do what you have done - find the best (aka lowest risk) time to go and go. You will get more benefit from the swimming than the cost of the risk of catching a virus.
If you answer yes to both questions, then I would put it off til the day you're finished treatment.
I find, especially in one's 40s (as I also am), CLL is about finding the life balance and the personal cost/benefit balance. You have decades to live life, and you have to make sure you are living in a healthy way that accounts for all of your possible future health issues, not just the one you currently have.
PS - But run it by your hemo doc, too, and see if he's adamantly against, kinda against, or all for it:)...
This is the difficulty Misfit... I also have a knee injury which makes running, cycling and a lot of bodyweight exercises impossible for the time being.
So I think daily exercise (which I long to do) is just not going to happen without access to swimming, rowing, elliptical & weights. Hence the gym...
I am doing floor exercises and some upper body ones on a Bowflex, until I can get a doc to decide what my recent knee MRI means. We got the smaller Bowflex not a full size one, no one here is a heavy duty weight lifter.
Our specialist didn't have my husband (also in his 40s) restricted at all when he was on O+V+I. His ANC was never low and he did not experience repeat infections so he was able to continue doing all these things (he's an endurance runner). Talk to your dr, but we all must do a risk reward assessment for ourselves and decide what we are comfortable with.
Mental health is an important part of living with a chronic disease. You can always try doing what makes you happy and if it turns out you catch things easily re-think your decision. I just had COVID and rebound COVID and never had any symptoms. Everyone's response to viruses are different. I would discuss with your Dr first. And this is just my opinion.
I am in my late 60's & have been a gym/pool member for 20+yrs & went to a pay as you go gym before that. I was diagnosed with CLL in early 2020. Apart from when the gym/ pool was closed during Covid I have continued to go at least twice a week & play golf (walk with electric trolley) at least once a week. Since retiring last year I go to gym or in the pool three or more times a week, this is always during the quieter daytime periods for the gym or adult only session in the poo/sauna/steam room/jacuzzil. I just make sure I wipe the gym equipment before & after use with the antibacterial spray & shower several times when using the pool spa areas. It looks like I am heading towards some treatment in the not too distant future, when this happens I will be guided by the haematologist/CLL specialist as what is safe to do with regards to exercise.
The last two chest infections I had were straight after Covid jabs in Feb 2022 & July 2022. I hadn't had chest infections for many years before- I will not be having any more Covid jabs. I had Shingles in June 2022 ( I have since had two Shingrix jabs) and Covid in Dec 2021, but no other infections. I had night sweats last summer but these have now thankfully stopped. The treatment is being looked at because of increasing numbers. I have just had another blood test so will know more after my telephone consultation next week.
Stay out of steam rooms. Temperature and humidity are ideal for long viable times of both virus and bacteria. Sauna has high temperature and low humidity, temperature melts virus like butter and low humidity desiccates bacteria. Welsh did a risk analysis at start of covid and concluded that period of viability in a sauna was about 5 minutes.
Pool and jacuzzi have a high chemical load. Since the pool reopened I was swimming, sauna, jacuzzi 4 times a week, I've not contracted anything. Visits to my bother, his family and menagerie are a higher risk. Had a period where it seemed I would be a bit off for a couple of days, bad enough to not go swimming and then feverish by the next weekend after every visit.
For stuff like resistance weights I'd wear gloves, save all the faff cleaning kit.
Other people are the key risk, you can mask but it's more effective if the source masks.
Week 3 day 3 of first cycle O+V, high risk TLS = 38 blood tests and 6 cannula in first 56 days. Night before I was admitted for first dose of O I went for last swim, swam 2x200m, 3x400m. Speed is down 30% on what it was 10 years ago, hard to tell how much of that is age or CLL, avoiding getting breathless if I push it. Got swimmers elbow about 6 years ago trying to compensate for 10%, doctor laughed told me "you do have very pointy elbows". Wanting to get back in pool will be a driver for ditching the PICC line at week 1 of cycle 3. Having fragile veins, bruising that lasts a month from about 50% of blood tests, all "double dip" so 2 bruises and having fainted once when they had to get a red torch are all for keeping the PICC for whole 12 cycles. So a guy on the ward told me he has had sepsis twice, both times started at PICC. I'm hoping that having 25% remaining good marrow (some people start treatment with less than 90% or even zero) will avoid low neutrophils which is the clinical issue.
I also think diet plays a role in this. The meds *do* tend to affect other cell lines. Our body will react by trying to make more cells and get back to normal, that's a part of homeostasis. If we don't have extra nutrition on board, it may not be ale to make extra cells easily. Because our kidneys and liver are also working hard to process and eliminate the dead/dying CLL cells. On top of bone marrow trying to repair itself. If the nutritional building blocks aren't there, it can't happen.
I'm currently on my third round of treatment (over nearly 30 years) and I have always swum as soon as I was no longer severely neutropenic. I'm currently on venetoclax (neutrophils 1.75 so a little low) and when I spoke to my consultant about swimming he was very relaxed about it provided it was in a well maintained pool and I had no open cuts or grazes. He considered it low risk and that the benefits of exercise would out weigh the risk.
OK, this is so helpful. I'm thinking I will try swimming at quiet times with goggles, and masking in the changing room. If that seems OK, gym at quiet times with mask & gloves. And definitely avoid sauna/jacuzzi at all times.
hI green bunnies , i am just cleaning our pool now getting ready for summer .. i would definitely use a nasal /throat spray after swimming in a public pool . i use a clear iodine spray but a saline one may work if you irrigate the mucus linings well with the spray .. nutrition, exercise in the open air and a contented mind are key to long term success with any disease ... for many the last item being the hardest to have and keep .. blessings , james
I hope you do well with the swimming, I miss it too! I kept asking the consultants every time and they kept saying no, until a different consultant recently said he didn’t have a problem with it. It appears that different people have different views and getting to cycle 3 and the complete ramp up of v seems to indicate a time when these things can be relaxed a bit if your blood numbers are ok. I still haven’t been back yet, I’ve lost my confidence because I felt like I kept asking and kept being told no, there must of been good reason. Although I did do a yoga class at the gym which was encouraged.
Ah that is interesting ... I'm on cycle 4 now and blood results are pretty good, so perhaps now is the time to give it a try. My gym has an outdoor pool which I feel OK about, but the thought of going inside the gym with all those sweaty people makes me very nervous indeed! How did the yoga class go?
ah yes, I think you mentioned David Lloyd, they are big gyms. I go to a much smaller gym and sometimes at least one of the fitness rooms will only have a few people in it at quieter times and the lanes only have one or two people in them for swimming. Outside pool sounds great! Yoga was great, I’ve been doing it on and off for years so it was nice to get back to doing something familiar in my before treatment life.
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