HPV 16 neck journey…

@hopeblos my husband still has his feeding tube after completing chem and radiation in Dec. He gets so dicouraged due to the lack of taste and phelm. I was glad to see your post about removing his feeding tube. That gives us hope.

I'm 2 years out from h and n cancer. You'll be looking back someday very soon. You made a good choice on getting the food tube. I did and I never regretted it. If you get mouth sores from radiation you will be glad you can "eat" without antagonizing your mouth. I say "if" because I only had one and it lasted 2 days and healed. I had dry mouth and used baking soda rinses often. They have various mouthwash formulas to deal with pain. Watch for lymphedema as a result of having the lymph nodes removed. The lymph needs to circulate under the skin....without its nodes it doesn't know where to go and can cause swelling and discomfort. Simple self massage works great. Mine would get bad and my surgeon prescribed professional face lymphedema massage. I also wore a face compression wrap given to me by my OT. My point is, if you have any swelling in your face or neck ask for help to manage it. Cancer care staff are amazing problem solvers. And of course here on "Connect" well, we've been right where you are. Take care. Sleep more during radiation.

@ervin25 The recovery phase after treatment seems to be so different for every person. I think our biggest surprise has been how slow the recovery has been, and YES on frustrating. Hang in there!

Reading from this corner everyday gives me courage. But I want to hear from those that are out of treatment for some years and they are cancer free. What is it that you’re doing to keep yourself safe from recurrence? I need the tips please

@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.

@tractormike congratulations on a clear scan! Your post is an inspiration to others and the journal is a great idea. I love your positive attitude. I know it will help others.

@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

@tractormike Hello and welcome to the head and neck cancer group. Some people join out of curiosity. You joined the hard way. Your insight and input is very much welcome.
I had this fun ride twenty five years ago. Back then the success rate was a bit sketchy. I knew of two people who didn't make it past one year. Now things are much improved with everything from diagnosis, better focused radiation, new drugs, better Chemo, and a lot more experienced clinics dealing with this cancer. In fact, during my time, the discovery of the HPV connection came out in the medical journals during my radiation weeks. This changed treatments radically.
Glad to hear you are over the two year hump. Likely all will be good going forward. I will let you know when the worry about cancer return subsides. I'm still waiting on that day. Again welcome and good healing.

@kent8692

I began 7 weeks of radiation and chemo for my HPV 16 cancer two weeks ago. It started in my left tonsil and then spread to a lymph node. No surgery, just chemo and radiation.

I'm 71 and I've never been sick in my life so this is all new to me. So far so good, but I am a little constipated and am starting to get a bit of dry mouth.

They say, at least in my case, the two or three weeks after treatment will be the worst. Really looking forward to that. 😃

Best of luck to you.

@toleolu sounds like you and I are in the same exact spot. I just finished two weeks, with four and half to go….my mouth is definitely undergoing some changes, dry of course, the metallic taste, all of it. No appetite, have lost 8lbs or so…feeding tube to be placed on Wednesday so hopefully I can turn the weight loss around. I can’t help but think about how much worse this is going to get in the next 6 weeks. Like you, I never had any health issues until this HPV deal….it still doesn’t seem real, but it is:(
Just know - you’re not alone. Please keep in touch on here so we can “compare notes”….