← Return to HPV 16 neck journey…
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Head & Neck Cancer | Last Active: 4 days ago | Replies (36)
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@linda90
Well I’ve only been out 2 years and 10 months but feeling pretty darn good and absolutely no signs of any issues. I’ve given up alcohol and I personally think that’s a bigger concern than most realize. Try to eat a balanced diet leaning to high protein and less carbs and sugars. Exercise daily and get 8-9 hours of sleep. Keep a positive attitude, don’t dwell on the “what ifs” and don’t fret about not doing everything as we all have to find that balance in life and then there are no regrets. Fight cancer, not yourself! Get outside and see nature today. Godspeed
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@linda90 it is always a great idea to work on complementary medicine to help maintain our health. These groups are a wonderful source of information to help us all. My SCC was not HPV associated as it began in my ear, But despite developing metastatic disease which is considered incurable, I am here 14 years later living a good life, watching for the next met. I thank my Mayo Clinic team for this success in prolonging my life, but also have made many additions to my daily routine.
I highly recommend two books: How Not to Become my Patient by Ed Creagan MD, a Mayo Clinic Palliative Care doctor, and The Rebel's Apothecary by Jennifer Sansouci. I try to live by Dr. Creagan's book and I have used medicinal mushrooms for over 6 years per the Apothecary.
I started an immune augmentation therapy right after my chemo/radiation ended. I travel to the Bahamas for that. I started a beta glucan supplement suggested at that clinic and continue it daily. The mushroom powders also are full of beta glucan. I always take Vitamin D and have levels tested periodically. A good source of Curcumin (Turmeric) and a daily dose of a reliable form of Manuka honey are included. Exercise and diet changes are a good idea.
There is a lot to learn about OTC supplements and they can cause issues like delayed blood clotting or interference with other medications so we have to educate ourselves on what we take. Memorial Sloan Kettering has a nice listing of complementary therapies on their site which explains side effects. Many medical doctors are not well versed in these supplements because there may not be accurate studies to back them up. Using supplements marked as GRAS ( Generally Regarded as Safe) has always felt safe to me. I know the feeling of finishing traditional treatment and wondering what is next? How do I fight this going forward? Well you educate yourself and do a lot of reading, explore support groups, and talk to other patients. Make wise choices and if something claims to cure cancer and sounds too good to be true, it is, so scroll past it.
I have had 4 different metastasis locations over 14 years and frequent scanning has identified them so they could be addressed with surgical or medical treatment. My Mayo oncologist says I am a miracle, which warms my heart and makes me think that something I am doing is helping my medical team to control my cancer. Complementary therapy is not alternative therapy. Your medical team knows what works and will keep your disease under control as best they can. Perhaps there are other things that you can do to help yourself along the way, but don't lose touch with your medical team.