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If You’re Facing Head/Neck Radiation

When radiation was the best option for Tom's diagnosis, wife Peg began researching ways to help alleviate the brutal side effects. Here is what she learned.
By Peggy Moulton-Abbott
Published: November 2, 2017
 

Head and neck cancers are particularly difficult cancers to treat because the tools we use in Western medicine are so destructive of the noncancerous organs near the cancer site and throughout the body. So much of daily functioning — eating, talking, breathing! — requires a functioning throat, and radiation does its best to render everything it touches nonfunctioning.

My mother was diagnosed with stage 4 metastatic squamous cell head and neck cancer (SCCHN) in her tongue, bones and brain, and she suffered terribly from the side effects of radiation before she died.

When my husband Tom was diagnosed with the same cancer at the base of his tongue and neck glands, I nearly lost it. We sought alternative medicines, but ultimately he decided to use radiation. Tom also suffered from the side effects, but as a much younger, healthier man, he was somewhat better able to withstand the assault of radiation. But recovery has taken years and may never be complete.

We were told about the side effects of radiation, but we had no clue about the practical and emotional aspects of what happens.

When diagnosed, Tom was in his mid-50s. He could easily run 10 miles in a morning and lift heavy weights in the gym the same afternoon. He worked incredible hours at a high-stress job that required a lot of travel, study and insight. He was a man in his prime.

The 4-Year Journey

It’s now been 4 years, and Tom’s nearly back to where he was, but it’s been a tough time period. He can run 5 miles, but that wipes him out. He now works at a lower level because the stress and travel aren’t worth it to him anymore. We fight hard to keep our health and to avoid any future cancers. We eat only organic, non-GMO, highly alkalizing water and foods, and seek out alternative therapies to maintain our health.

Tom’s doctors recommended weekly infusions of Cisplatin and 5-FU for a course of 3 to 4-1/2 months and a feeding tube (because his throat would be too damaged for eating for “a while”). Cisplatin is known and proven to cause irreparable deafness. The medical oncologist also recommended adding a biologic class drug called Erbitux (cetuximab), which was thought to augment the systemic effects of Cisplatin. The side effects of this extremely powerful and destructive drug were devastating, and I’m writing a follow-up story just on that drug.

We were told about the side effects of radiation, but we had no clue about the practical and emotional aspects of what happens.

His Salivary Glands Were Destroyed

We knew the radiation would destroy his salivary glands — what nobody told us is that without them, eating is such a struggle that people lose interest in trying to force the food down. Tom was forced to swallow 1 or 2 cups of water with every meal just to move the food past his esophagus and into his stomach. This meant he often filled up on water before he was actually finished eating the number of calories he needed to maintain or regain weight and muscle tone.

February 2014 (Professional portrait taken the day before Tom began radiation)

October 2017 (at a family reunion)

At the same time, his taste buds were severely damaged. Some foods tasted bad or wrong, others just tasted like nothing, and others hurt to eat. For more than a year Tom was unable to tolerate any food that contained sodium, acid, spices or small particles. This translated into his experiencing pain when trying to drink fruit juice or carbonated beverages, eat pasta with tomato sauce, tolerate onions or garlic, consume sushi or anything with small seeds or rice, and even sometimes just to enjoy a cookie. Almost 4 years later he still struggles to eat food and tolerate spices and salt.

Because of this, Tom lost 42 pounds from his already slim frame in the first 4 weeks of the 7-week daily radiation protocol. The cascade of negative impacts continued to spiral downward with a loss of physical strength and ability to engage in the types of strenuous exercise to which Tom had been accustomed over his lifetime. He used running and weightlifting as a means of stress reduction, which he sorely needed at this time, but in which he could not fully engage due to lack of caloric intake and energy.

Tom had to replace his entire wardrobe, right down to underwear and shoes, which cost upward of $1,500, not counting the price of tailoring his business suits.

The hospital nutritionist recommended Ensure and Carnation Instant Breakfast as the only or best supplemental drinks to offer to people who suffer from most cancers. Those products contain high amounts of sugar, high-fructose corn syrup, cholesterol, carbohydrates, sodium and genetically modified organisms. Yet any type of sugar is the food that fuels cancer cells in the body, and the nutritionist refused to acknowledge this proven fact. We found a much more viable product called Orgain, which was developed by a physician and fellow cancer survivor. It provides far better and safer nutrition than Ensure or even ProSure. [Note from editor: No one involved in this article or website benefits in any way from suggesting a product.]

The Fatigue Factor

We were warned about fatigue. What we didn’t learn until months later is that Tom’s lack of energy would become chronic, and that a man who used to live very efficiently on less than 6 hours of sleep/night now needs well over 8, and even that is not sufficient to sustain the level of activity he needs to do his job and normal daily activities. Always a very light sleeper, after radiation Tom now falls into an immediate and deep sleep. He does not rouse all night and is still quite tired when he gets up in the morning.

He snores heavily at a very high volume, and despite repeatedly brushing his teeth and using mouthwash/chewing gum, his breath is bad (since he has no salivary glands to make the moisture he needs to swallow bacteria formed by eating and drinking). Imagine the impact this has on his self-esteem when he has to be close to people in his professional and personal life. None of this was true before he underwent this course of treatment. These are changes in his metabolic system, not just the fatigue we were told about.

Radiation Caused First-Degree Burns

We never expected the seriousness of the burns that radiation can cause. Tom suffered extreme and painful first-degree burns to his neck in the area where the highest doses of radiation were applied. While he typically refuses all types of pain medication on general principles, we were glad for non-opioid pharmaceutical pain relief to address the immediate pain, swelling and potential for infection due to the open nature of his wounds.

We didn’t foresee how much difference the radiation, in combination with weight loss, would make in Tom’s appearance. Tom was a very young-looking 56-year-old, often mistaken for a man in his 30s. That is no longer the case, and he now looks as much as 10 to 15 years older due to the slackness in the skin of his face and neck, and discoloration of the tissue. Radiation and chemo are known causes of collagen loss, but nobody warned us how bad it would be. Clearly, this is not life-threatening, but it leads to a change in self-perception, and it would have been helpful to have been warned about that, since it has directly impacted his quality of life.

Cancer IS a medical crisis, but it is NOT a medical emergency.

So now that I’ve thoroughly scared you with Tom’s experience, let me suggest where I believe that nontraditional, complementary medicine can be a great help. Some alternative care centers engage in a planned buildup, and rebuilding of, the patient’s immune system before and after the destruction associated with IMRT and chemotherapy. I doubt anybody would sincerely argue that surgery, radiation and infusion drugs weaken the patient’s immune system, yet we found no information was given on this subject, nor were most physicians willing to listen to our position on this very important component of HEALING.

If you or a loved one is facing a cancer diagnosis, I urge you to speak to many doctors before deciding on a course of action. Consider alternatives in addition to Western medicine. Recognize that this is a big deal. The diagnosis of cancer and the treatment profoundly changes a person, right down to the DNA level. Cancer patients lose confidence in their bodies and question every aspect of health, physical ability and mortality.

There are many roads through this terribly challenging diagnosis, and many ways to treat it. What we tell people now is: “Cancer IS a medical crisis, but it is NOT a medical emergency.” You virtually always have time to stop, regroup, research, and get a full understanding of the life-changing impact of Western medical treatment. Do your best to find the right treatment for you and yours, and stay positive. It was tough, but Tom’s feeling better (if not the same) and grateful to be alive.

Peggy Moulton-Abbott

Peggy Moulton-Abbott

Peg and Tom have been together for 24 years. She is a focus group moderator. He is a recently retired litigation manager. They are currently investigating programs to become certified functional medicine coaches.

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