Hello anybody10. I hope and pray you are doing well.

To be blunt the oncologists (both of them) were not transparent and when asked pretreatment of side effects and long term outlook, they remained silent. My second ENT was a bit different, but not to get caught up in a issue he directed me to do a little web searches on "squamous cell carcinoma base of tongue". The first ENT botched my first biopsy (not obtaining a proper sample) almost 8.5 hours on the table. His ego was larger than God, and atrocious bedside manner. He referred me to an associate ENT and this ENT was helpful with finding and scheduling everything. He and his PA was with us every step of the journey.

The collateral damage: Feeding tube was constantly irritated/close to infection (the surface under the PEG tube shield) (5 months). GERD was so bad that I was taking honey to reduce the GERD. So with the GERD they put me on omeprazole 20mg daily. Later while talking to a chiropractor he mentioned that the thick ropy phlegm that I could nebulize in 3% saline reduced glutathione (1/5 teaspoon) one or twice a day. This did the trick, no GERD and cuts the ropy phlegm so now when I cough it breaks up. About in week five I started to have autoimmune issues. I came down with plaque psoriasis and it felt like I was buried in an anthill. Four months after treatment ended I contracted shingles. A week after my last treatment I had second degree burns to the back of my head and neck. My neck became so swollen (as big as my head) I tried to contact both of the Oncologists but they were not to be found. I contacted my ENT and he said get to the ER. Five hours in the ER and every 10 minutes they wanted to do a tracheostomy because they were afraid that I was going to quit breathing. At 4.5 hours into the ER visit, they finally talked to my radiation oncologist and he told them to release me and for me to come in Monday morning so I could be evaluated. Lymphedema (head/neck) the oncologist says that I am the worst case that he has seen in 15 years... At this point he walks out of the room, and the head nurse starts making some calls and getting me to a physical/occupational therapist that deals with lymphedema. In the interim, someone told me to contact a acupuncturist and gave me a name and number. The first visit at the acupuncturist he got right to business, 45 minutes later I was on the street and having some Vietnamese for lunch with my wife. My wife looked up and gasped (I am thinking the worst) then she says your neck is going down. Lots of visits and exercises at PT. Finally insurance approved a lymphatic pump suit for use twice a day for life. Radiation has destroyed my lymph glands on my right side as well as my salivary glands. I stopped drinking/using anything with fluoride. Purified water is my staple something with a pH of 8+ or higher. Have your vitamin D levels checked and keep active. Your taste buds may never come back. You might find that the first bite of something you can taste it, but the fades with each and every bite. Try spicy (not bland) foods. Fried foods will coat your tongue causing many issues from taste and reflux. I now also sleep on a wedge. Checkout the support groups with your Oncology facility and their dietician. There is so much to cover, so if you have questions, ask the group. I have for the most part ended my relationship with the oncologists and now use mostly alternative health choices. We will keep you in our prayers and thoughts.

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