Infrared sauna

[nitram120]

Hi Everyone ,

I am going to a spa next month and wanted feedback on whether an infrared sauna or certain massages or wraps (seaweed ,mud, ) were off limits to those of us with CLL.

Thanks

[81ue]

It sounds like it would be very relaxing and enjoyable. I've got too low neutrophils right now (have to be careful about fresh fruits and veggies), so I'd be scared of the mud and seaweed unless I knew how it was stored - open jar used on everybody? or new unopened jar just for me? Fresh seaweed or somehow ...cooked?

[nitram120 in reply to 81ue]

Thanks 81ue. I will verify when I am there.

[MsLockYourPosts Passed Volunteer]

Please get your doctor's input on this. He would be the person in the best position to advise you. If you have lymph node involvement, massages may not be advisable. Also, a good massage therapist will often ask you about whether you are dealing with cancer, and will refer you to someone trained specifically to deal with cancer patients. Friends have been turned away because of their CLL.

Your doctor would know the specifics of your immune system and how that related to the advisability of the other treatments. I hope that you get a green light. This sounds very therapeutic.

[nitram120 in reply to MsLockYourPosts]

Hi ,Thanks for the input. I will see if I can contact my doctor beforehand and get some advice.

[JigFettler Volunteer]

I agree with the post above.

You need to get advice about you immune status. CLL imparts a weakened immunity from the start, treatments can further compromise this.

Spas typically will be humid and have sprays and aerosols of water which one cannot help but inhale.

Theoretically this would pose an infection risk.

I dont know what an IR sauna is... will check... the wraps may not be sterile. Are the ingredients reused?

Worth checking!

It seems harsh to counsel caution in what would be a wonderful therapeutic experience. Infection protection remains top priority for us all.

Best wishes.

Jig

[nitram120 in reply to JigFettler]

Thanks. I always err on the side of caution. So I will probably stay away.

[blowinginthewind]

Not sure where you are in the world, but in most places in UK masseurs won't treat cancer patients without written confirmation from their oncologist - or haematologist in our case. I am allowed massage provide areas with raised lymph nodes are avoided. I am allowed to swim, but recommended not to use hot tub, sauna, steam room, and ideally go home to shower. I am 18 months diagnosed and on watch and wait.

[nitram120 in reply to blowinginthewind]

Thanks for your reply , since I am going for an extended time and it is a retreat I will relax and avoid the treatments and saunas which may be risky. I am on the other side of the pond and after 10 years of watch and wait I have never been counselled on pools, saunas or hot tubs but will do an hour of yoga instead of an hour of sauna. Better safe than sorry.

[blowinginthewind in reply to nitram120]

I swim most days, and always went in the hot tub afterwards. I already knew that hot tubs had a lot of germs in them because my daughter was warned never to go in with contact lenses in because it causes serious eye infections if you get water splashed into it. Hence I asked at my first appointment. But the whole pool area is being refurbished, and I intend to have a few minutes in it as soon as it reopens, literally I will be stood by the pool door so I am first in. But just the once.

[Ellieoak]

As a CLL patient of 18 yrs. And as a massage therapist and a Naprapath I will tell you that the only time to stay away from massages in when your neutrophils are low. Otherwise you can get massages anytime. I have had massages for 45+ yrs. They are wonderful. CLL is a cancer of the blood and lymphnodes. Nothing is going to change that. Not a massage, not sauna. Yes I do agree with others the seeweed must not be from an opened jar. But otherwise Go Get A Massage..it will do you good. Sincerely, Anna

[nitram120 in reply to Ellieoak]

Thanks Anna

[Catnap7]

Hi I bought an infrared sauna at Costco years ago after my diagnosis. I was in it three to four days a week. I did some light movement (Gyrokinesis) in the sauna to move my lymph Not only did it temporarily shrink my big nodes down but made me feel so much better all around just like participating in

Naturopathic medicines while I was on watch and wait. There are a lot of toxins we can excrete through the skin. I made a lot of change with the the infrared sauna and other therapies but nothing could stop my nodes from creeping up. I would never let anyone use my Infrared sauna or go to a club and use one. I do water aerobics but where I go is not a club and the water is treated 4 times a day for the purpose of cleanliness and disinfecting I immediately take a shower afterwards

My goal has always been to try to feel good while having CLL

I did everything I could afford to do to stall treatment and that day only came due to my nodes NOT my WBCs I’m glad I chose that path...now in I and V trial.

I’m still using my Infrared sauna to help with muscle and joint pain caused by my good friend Ibruitinib

Catnap7

[Peggy4]

Although I live in a very small town we are lucky enough to be home to a charity funded cancer centre who provide support, advice, counselling,complimentary therapies etc... I go as often as I can for a massage, so relaxing! Agree check with your Dr first, but don’t give up on something until you’ve checked out whether it’s ok.

Peggy 😀

[MsDJ]

There are so many schools of thought from different specialists but I remember this quote from noted CLL specialist Dr. Furman Weill Cornell NYC "There is absolutely no concern regarding CLL patients receiving massages. The massage itself does not release WBC's into the blood or induce any disease progression."

[zsuzsiB]

I’ve had massages regularly for 25 years. I was diagnosed with SLL/CLL in 2010 and on WnW for six and a half years after that, with ever enlarging lymph nodes. My hematologist/oncologists reassured me that is safe to continue the practice. My massage therapist was careful around palpable nodes during that time. Since I started Imbruvica in 2017 the nodes are undetectable so the massages can go on with more abandon. I hope you will also be able to enjoy the benefits of a good, relaxing massage.

[nitram120 in reply to zsuzsiB]

Thanks for the input everyone. I hope to enjoy the time away.

[LovecuresCLL]

I would not use a tanning bed. It’s no different than laying out in the sun. Sun exposure may lead to skin cancer.

Infrared is just heat. So I don’t see how being exposed to heat is a problem.

Seaweed and mud is harmless.

[MsLockYourPosts Passed Volunteer]

Jig asks some pertinent questions above that should be considered before making a decision about seaweed and mud.