Prevention Routine?? 5 1/2yrs. on the I/O clinical trial

[Varney]

Hi All,

Just wanted to share what I have done to try to stay healthy with reasonable success during my 12 yrs. journey confronting CLL.

*Brief History: 84 year old male diagnosed in 2012 with 11q, trisomy 12, unmutated. Normal blood picture except for low platelets, IGG. IGA, and I GM. Currently taking 280mg of Ibrutinib and 400mg of Acyclovir (twice/day) and no other meds.

My Prevention Routine

* HAVE A HEALTHY MOUTH: no bleeding when brushing or flossing. Maintained by using an electric toothbrush (3 times/day), flossing (1 time/day) and a water pik (2 times/day).

* EXERCISE THOSE LUNGS: I do this by doing an aerobic exercise ( 3 times/ week) and achieve this by using a stationary bike, treadmill, rowing machine, whatever it takes to increase my heart rate and breathing (30 minutes).

* STAY HYDRATED: I do this by checking my urine—a very slightly pale yellow.

* SUPPLEMENTATION: I take vitamins D3, C, B complex, B-12 (sublingual), Zinc (sublingual), magnesium, and iron. Best way to take iron is on an empty stomach with Vitamin C (when you get up in the morning) and don’t eat or drink anything except water for at least 1 hour afterwards. I had very low iron until I tried doing it this way.

* KEEP THOSE NASAL CAVITIES HOSTILE TO PATHOGENS: I use saline nasal spray 3 times/day. I also use iodine nasal spray when I go out to eat or flying etc. I also have an iodine throat spray available should I feel a sore throat coming on. Haven’t used that. I asked both Mayo’s and the James Center about the iodine and neither got an endorsement or a refusal for me to use it.

* WASH THOSE HANDS: have handiwipes in both your car and on your person when going out.

These are only my ideas and certainly not endorsed by any of my physicians except for the obvious ones. The iodine spray and aerobic exercise should only be done with first consulting with your physician. Cheers. I also have a nightly Guinness. Wishing you all the very best on this CLL journey.

Varney

[HelloCLL]

Hello Varney. Thank you for the tips! Live long and healthy best wishes! ❤️🧡

[Varney in reply to HelloCLL]

Thank you. Will do and the best to you. Take care

V

[LeoPa]

Coffee, calcium and dairy block iron absorption

[Varney in reply to LeoPa]

You are absolutely correct. That why you should have only water after taking the iron tablet. It is interesting that vitamin C really helps with absorption. I take 500mg of vitamin C with the iron. Thanks for responding and wishing you the very best.

V

[kablea]

Hello Varney,

What you are doing is improving your resilience, something we all need to consider. Thanks for your post and well done.

[Varney in reply to kablea]

Thank you. It is just so important to keep yourself as fit and healthy as possible when are immune systems are so compromised. Wishing you the best and take care.

[BigfootT]

Great tips. Thanks!

[Varney]

You are welcome. It just a matter of making it habit forming. Thanks for responding and good luck to you.

W

[AllanJardin]

Hello Varney. Thanks very much for the tips. You are a wise man. Best Regards, Alan

[Varney in reply to AllanJardin]

You are welcome. Not so wise, but it just make sense to try to stay as healthy as we can so we don’t unnecessarily tax an already compromised immune system. Thanks for getting back and I wish you the very best

V

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[splashsplash]

I read your wise tips and then read how old you are, amazing!!

[Varney in reply to splashsplash]

Yes, and I don’t feel a day over 100 Actually, the I feel the key to anyone’s success is a positive mental attitude, try to stay mentally and physically fit and practice prevention in whatever form works best for you. Thanks for your kind words and I wish success, health, and happiness. Take care. Oh, and I forgot, have at least one Guinness a day.

V