Cll and not swiming. I was not aware of this. Is it all pools or lakes and or ocean?

[becks1111]

[Cllcanada Top Poster CURE Hero]

There was a thread on this topic recently...

healthunlocked.com/cllsuppo...

[littleriver]

This news to me ,can you give me some background?

[littleriver]

Is swimming a no go with CLL?

[bkoffman CLL CURE Hero]

The prior thread is worth reviewing. I believe it is a personal decision based on our history of infections and immune status. I have swum more since my diagnosis to stay in shape, but hate the chlorine. Never had a problem, but others may not be as lucky.

[becks1111 in reply to bkoffman]

Well to be honest in the 8 yr's since diagnosis I had never heard this. I am a fish so obviously I spend time in the water. My oncologist Dr Kipps never said anything about not swimming. I was 42 when diagnosed and he knew I spent a lot of time at the beach. Maybe now I should ask him about it. My 8yrs w & has ended....Fcr starts a week from wednesday.

[Stiffgirl]

I keep well away from swimming pools, it is not the water but the changing rooms that are crawling with nasties. I do yogo to keep fit at home, certainly helps lift my mood

[Lenny123 in reply to Stiffgirl]

This is a huge issue. Gardening, swimming, running can certainly expose one to nasty pathogens, fungal, viral, bacterial. Even Yoga, how often is mat cleaned ? How about work related exposure for health care workers, those in close public contact??

Dr Koffman is so right, it is a personal decision, quality of life, versus risk. Extremely hard to be a "bubble boy or girl", especially outside of transplant.

So- modify risk? Bear in mind that none of these offer complete protection! A couple of ideas( some stolen)-Wear N95( or 99) when at increased risk( travel, running in woods, gardening). Check Yoga floor, grotty carpeting? Probably try a studio with solid, clean flooring. Swimming? avoid dirty water, be aware of coliform count at beach. Shower at home after swimming. Gardening is hugely troubling, my understanding is that turning over earth, handling soil is out. Suppose one is a farmer!!!

Personal hero is infusion room mate, with cll, a near Olympic swimmer, who swims every day, including chemo days.

Would love to hear how others try to live around these dangers.

[charliegirl in reply to Lenny123]

For me I need to do the things that make feel good and take some calculated risks. Since my first treatment I seem to have had less infections - both in number and severity and am extending myself accordingly. Life for me would be very grim and lonely indeed if I had to wrap myself up in a bubble.

I live alone but have a much loved dog for company. I really enjoy our daily walk in woodland - beautiful in all weathers - every day; it's currently very muddy and I fell flat on my face last week and got mud on my face + hands. I simply washed it off with soap and water when I got home.

I am fully aware that others need to be much more careful. Things may change for me as I am likely to need to start treatment again in the near future. For now "Seize the day" is my motto.

[cloct05jul88 in reply to charliegirl]

I like your balanced and commonsense attitude to doing activities which make you feel good. A balanced outlook is always valuable in life!

[charliegirl in reply to cloct05jul88]

Thank you v much. To my surprise, perhaps I might say delight, having CLL together with other unwelcome life experiences, has freed me from a lot of my former inner angst!

[AussieNeil Partner Administrator in reply to Lenny123]

Lenny, you might find these posts of interest, where this community has shared tips for avoiding infections:

CLL - a Cancer of the Immune System

healthunlocked.com/cllsuppo...

How to deal with well meaning but inconsiderate visitors

healthunlocked.com/cllsuppo...

Use of Masks to Reduce Infection Risk

healthunlocked.com/cllsuppo...

Tips on Staving off Winter Colds

healthunlocked.com/cllsuppo...

The Dangers of Compost and Potting Mix

healthunlocked.com/cllsuppo...

[Lenny123 in reply to AussieNeil]

Thanks for the links, they touch on many of the challenges around living with compromised immunity.

[ThreeWs]

I am firmly entrenched in the belief that there is an important divide between CLL patients that is little understood, not discussed and better describes CLL as an immune disease of chaotic consequences rather than the accepted definition of being primarily a variety of blood cancer. As we all know, deaths are predominantly due to infection and or secondary cancers and rarely as a direct cause of the cancer cells. Over the 8 years of my journey I have been struck by the extremes of infection experienced by some patients falling into two camps of the chronically infected, even at early stages, to others, like me, who report minimal to no infections for long periods of time. In fact I had two chronic infections, one being fungal and one a herpes simplex, disappear at the time my CLL became diagnosed.

Many CLLers are highly functional but are looking for advice as to how to protect themselves against infectious agents. Because we have multiple and complex immune functions it would not surprise me to find that a subgroup of our community may have much higher immune function than is the general consensus. I do not imply ignoring the threats but for those not experiencing frequent infections, take a walk on the wild side and play in your garden,

take that trip and don't put your life on hold. Be assured that something will get us given enough time.

The exception to this view is when we are undergoing treatment. Most all our treatment therapies will at least temporarily damage whatever level of immune function we have. All patients are endangered by all therapies is a good thing to keep in mind and some may not recover to a former levels of "Good Health" if they have been fortunate to have had it prior to therapy.

WWW- 3 colds in 8 years and disappearance of Herpes Simplex except once during 2nd cycle of FR in 2009.

[Lefty in reply to ThreeWs]

What a sensible outlook feels me with confidence. Thankyou.