Head and Neck Cancer; What to Expect
We had a lot of questions, which is why we created this site. We hope it helps. This is what Lee experienced and learned along the way and should not replace professional advice.
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| Lee is 52 |
On November 26, 2013, Lee was diagnosed with cancer. We were advised to visit MD Anderson Cancer Center (MDA) due to it spreading from his tongue to his lymph nodes. We took the advice.
On January 5, 2014, we left El Paso and headed for Houston MDA for Lee's cancer treatment.
Lee's cancer is called squamous cell carcinoma
Symptoms and treatment will vary by patient.
Lee's Symptom
Lee had a swollen lymph node, but he ignored it for many months because his general practitioner stated that because the swelling goes up and down it is nothing to worry about.It turns out that node fluctuation is normal for this cancer.
Other symptoms may include:
sore throat, difficulty swallowing,frequent headaches, ear pain, whitepatches in mouth, pain in face, dry mouth, and no symptoms
U.S. Statistics (figures varied by website)
He was one of approximately 42,000 diagnosed in 2013 with head and neck cancer
More men than women get head and neck cancer.Head and Neck cancer makes up 3 to 6 percent of all cancers
The majority of oral cancer cases are the result of smoking and alcohol
In 2010 approximately 13,028,000 were diagnosed or living with cancer
There are about 314 million people in the U.S
Breast cancer is the number one caner and prostate is number two
68.5 % of patients survive past five years and that number is on the rise
463 of 100,000 people are diagnosed with cancer each year
175.4 of 100,000 people die each year as a result of cancer
The major causes of this cancer are:
The use of tobacco and alcoholHPV-16 (human papilloma virus 16)
This is the same virus that causes cervical
cancer in many women
A few cases are the result of genetic predisposition
Cancer caused by smoking and alcohol is 100% preventable.
Anyone who has had or is having sex is at risk of getting HPV (cdc.gov/std)
There is no FDA approved test to diagnose HPV
There is a vaccine for HPV 16 that can be administered to male and females
between ages of 9 and 26
Many exposed to HPV will build up an immunity and not develop cancer
A healthy lifestyle may lower cancer risk
Head and neck cancer if caught early enough has an 80 to 90 percent curable rate.
The treatment is said to be one of the most brutal, but the result can be promising.
Pain due to ulcers in the mouth and throat area and difficulty eating are the reason for the 'brutal'
label. Many patients receive both radiation and chemotherapy.
Lee's Appointments
HNT Doctors (head, neck, & throat)Dentist specializing in head/neck cancer
Oncologists for radiation and chemotherapy
CT scan * PET scan *mask fitting
X-ray * Audiologist * Gastrointestinal * Dietician
Speech pathologist for jaw exercises
Radiation Monday through Friday
Chemotherapy once a week
HNT doctor and biopsies
He had one biopsy on his lymph node with a local anesthesia and one on his tongue with general anesthesia. An EKG was needed for the tongue biopsy. HNT doctor along with the oncologist decided he would not have a neck dissection of his lymph nodes. The caner on his tongue was not surgically removed.Before radiation started, there was a visit with the dentist.
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| cast - fluoride mold - mold for mask |
The Dentist
It is important to visit a dentist familiar with this treatmentAny bad or lose teeth need to be pulled before treatment
You will need your teeth mold for the fitting of the mask
You may be given a mold for fluoride treatments and one to
wear with your mask during your radiation treatment.
You may receive your original cast of your teeth for any
additional molds in the future.
Oncology
A bronchosope was inserted into his nose by each of his doctors on several occasions. It gave a clear picture of the cancer on his tongue. A numbing agent is sprayed in the nose for this procedure.
Radiology
The radiation doctor determined the number of radiation treatmentsneeded to eliminate the cancer on his tongue and nodes.
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| The mask is placed in warm water and then it can conform to the face. It is a tight fit. |
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| He is clipped in and ready for radiation. Total treatment time 6 min. |
Radiation continues even
as the pain becomes severe.
Medication can be adjusted
to help alleviate pain.
Lee is claustrophobic and was
prescribed Lorazapam for
anxiety. He took it about an
hour before each treatment.
Some Radiation Side Effects:
sinus congestion - swelling -tightness - weight loss- loss of appetite - fatigue
sores in mouth - redness - peeling skin - hearing loss - swallowing issues
dehydration - thick secretions of mucus laryngitis - change in taste
hair loss on face and other treated areas - loud snoring - change in pitch
Chemotherapy
This doctor will determine if chemotherapy is needed in addition to the radiation.He had seven chemotherapy treatments. It was once a week and lasted about 3 1/2 hours. He was given cisplatin. Head hair loss was not due to chemo.
Each week his platelet levels allowed him to continue treatment. Almonds & green tea may help with blood count. Glutamine may help with sores in mouth. The worst days were three days after chemo treatment. Blood is taken several hours before every chemo to check levels. Some days were worse than others. He progressively became more tired each week after chemo treatments.
Some Side Effects of Chemo:
nausea - sleepy - hiccups - fatigue - sores and swelling in mouth diarrhea - constipation - decrease in sex drive - hearing loss ringing in ears - sterility- numbness and pain in hands, feet, and arms - decreased kidney function - low potassium and magnesium levels - Tell your doctor if you have a fever of 101
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| Clogged Vein |
diagnosed with having a clogged vein.
He had to give himself two
shots a day in the stomach with Enoxaparin Sodium. It was not painful.
Chemo Brain
This was prominent with Lee. He would forget things as simple aswhich way to turn to get home. He was also dizzy, clumsy, and had
life like dreams and twitches. He would talk in is sleep.
Chemo is recommended before or during radiation treatment, but not after.
Lee did his chemotherapy with his radiation.Mouth, Throat, & Neck Needs
Due to loss of salivary glands: 5x daily baking soda rinse for infections
Fluoride soak once a day
3x daily neck & jaw exercises
Avoid spicy foods, citrus, sharp edged foods
Avoid extreme temperatures in foods and beverages
No alcohol of any kind or carbonated beverages
Drink lots of water
Aquaphor moisturizer for skin
Liquid Hydrocodone for pain
Lidocaine & Ulcer Ease for pain
Lee was advised to avoid aspirin and ibuprofen during treatment.
Bowl Management:
Be prepared to offset or combat diarrhea and constipationThere are many medicines that will contribute to problems
Know what is normal for you
Warm liquids help more than cold for constipation
Prior planning will help avoid an enema
Eat fiber
Lee used Mira lax once a day to stay regular
These exercises really help with flexibility
He did these exercises 3x a day
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| Wearing a Mepilex patch |
five times
He also stretched his neck
from side to side
Move lips from side to side
Push lips out and then do a
big smile
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| He drank 2.7 liters of water & 1 of green tea |
Nutrition
Lee intentionally gained 5 pounds beforetreatment began to offset potential loss.
The goal is to not loose weight or no more than 15 pounds. Easier said than done.
Lee was advised to take in between 1,900 and 2,200 calories a day.
Protein is important to build cells and repair tissue.
He needed 77-99 grams of protein a day.
What you eat can effect the chemistry of your body.
There are a number of foods recommended during cancer treatments.
Seek advise from a dietitian or eat least consult a cancer food book for healthy food that is rich in protein and low in saturated fat.
Include fiber in your daily diet.
Drink ample fluids.
What to Eat Can Be a Hit or Miss
Don't stock up on food because what you can eat one week may not be what youcan eat the next.
Get the protein plus drinks because they have more protein and calories.
Food taste and texture changed dramatically at three weeks.
The soars in the mouth make eating difficult after the second week.
Food taste and texture changed dramatically at three weeks.
First and second week:
He could eat anything
Easy to eat after the third week:
Matzo balls * broths * Malto meal * pancakes * cucumber * protein drink * eggs * applesauce
Easy to eat after the fourth week:
Malto Meal and Protein drinks
By the fifth week:
All of his calories came from protein drinks
Everything he ate burned and caused a lot of pain
The sixth week:
After a visit with the speech specialist, it was suggested he go back to eating some solid foods
to keep his swallowing muscles working correctly. The following exercises were recommended to keep those muscles working.
For the muscles around the voice box. Lift neck up and hold for 30 seconds and rest for
30 seconds. Do this three times each, four times a day.
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| Mendelsohn exercise |
Put fingers by Adam's apple and lift and lower as you swallow.As you swallow hold your Adam's apple up for at least three seconds by squeezing your throat muscles.
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| Pitch glides |
Airway protection exercises
sing "eeeeeeee" starting in low tone and increasing to a high pitch for 20 seconds. Repeat five times.
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| Base of tongue exercise |
Swallow as hard as you can with food or saliva. Push as hard as you can with the tongue against the roof of your mouth while you swallow. Repeat five times.
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| Base of tongue exercise |
Stick out your tongue and try to swallow.
Repeat five times. This exercise was the most painful.
Immediately after you eat do the baking soda rinse and it will help with pain
A Feeding Tube
Lee was advised to get a feeding tube inserted only if the pain
became too severe, which made eating impossible.
Continuing to eat during treatment will lessen scar tissue and help
speed recovery time.
If you get a tube you pour your food into it.
Eventually you may be drinking all your food.
Sometimes people make it to the last radiation treatment before they need the feeding tube.
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| Week two Week four - hair loss |
Daily Diary
After week one
gained 5 pounds
Saturday 1/25/14 Total calories
for the day 2,066
Exercise 15 minutes = 135 calories /treatment / one bowel movement /no pain /nausea and lethargy through out the day/ 1 nausea pill/ felt pretty good / no problem eating/ did his fluoride treatment and jaw exercises 3x daily
Daily Diary After week two lost 2 pounds Saturday 2/1/14
Total Calories for the day 1,800/ Exercise 15 minutes =134 calories 1 bowl movement/ cannot taste all of the food discoloration on tongue/ burning feeling in mouth/ nausea slept for a few hours during the day/ feeling anxiety/ did his fluoride and jaw exercises
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| Week four - mucosis on back and side of mouth - white patches |
Daily Diary
After week three
lost 5 pounds
Saturday 2/8/14
Total calories 1,483
Exercise = 139 calories
nausea -took nausea pill/ mouth pain 5/ took hydrocodone/
1 bowl movement/ took Miralax / slept much of the day/ food is tasteless / did his fluoride and jaw exercises
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| Week four- neck rash |
After week four
lost 2 pounds
Saturday 2/15/14
Total calories for the day 1,270/ no exercises
1 bowl movement/ took Mira lax / slept all day/ started pain patch/ struggling to eat/ takes pain meds every three hours did his fluoride and jaw exercises/ does not enjoy eating eats Malto meal and protein drinks / hair loss due to radiation
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| Week five- painful rash |
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| Week five- painful groves on tongue |
Daily Diary
After week five
lost 1 pound
Saturday 2/22/14
Total calories for the day 1,600/ short walk/ slept for about half of the day
rash on his neck feels worse than any sunburn/ no bowl movement/ maxed out on meds
deep groves in tongue/ drinking all of his food/ water is hard to get down/ small amounts
of mucus
Daily Diary
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| Week six -starting to peel & node is smaller |
lost 3 pounds
Wednesday 2/26/14
Total calories for the day 1,250
Appt. with radiation doctor & dietician
had chemotherapy
radiation treatment
medication changed to hydromorphone 2mg
to help with pain/ fentanyl increased to
50mcg/ very sleepy/ took two bites of
peanut butter and jelly sandwich
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| Week seven |
Week Seven
The pain is getting worse. Drinking is become very difficult. The inside of the mouth
looks very raw. Still hoping to avoid a feeding tube. An IV drip would be a possibility
if dehydration becomes an issue.
There are a few conditions that will take time to return
Up to a year to return: May never return to normal:
taste buds * saliva production saliva production * facial hair
energy * full movement of jaw hearing * full functioning thyroid
After Treatment
Radiation continues to work several weeks after treatment stops
Avoid excessive sun & wear 45 spf
Avoid high sugary foods
Carry water with you always and drink a lot
Baking soda rinse several times a day for about 6 months
Fluoride treatment once a day for the rest of your life
Avoid alcohol and tobacco products
Continue jaw exercises 3x a day until improved
A follow up visit will be about ten weeks after last treatment to assess cancer
The reason for the wait for a follow up visit is to allow inflammation to lessen
During his sixth week of treatment - he continues to struggle to get his water and protein drinks down. His goal is to not get a feeding tube inserted in his abdomen. Approximately 35% of patients get a feeding tube. Some have it inserted before treatment begins. Some due to the surgical removal of the cancer.
Q&A During the sixth week of treatment
Q. If you could do it all over would you do chemo first and then radiation?A. No, It would just mean an extra seven weeks.
Q. What was the worst part about treatment?
A. Eating is the worst part and second would be pain.
Actually, eating makes pain much worse.
Q. What is your advice for someone just starting treatment?
A. Don't look at the calendar.
Q. What would you like as you near the end of treatment?
A. More pain meds.
Q. What was the worst part of chemotherapy process?
A. I'd take chemo over radiation any day, but I would have to say being
sleepy during treatment.
Q. What was the worst part about radiation process?
A. Being bolted in caused me high anxiety because I am claustrophobic.
Q. As you near the end of your treatment, what is going through your mind?
A. I am worried about my followup visit results because although my lymph
node has shrunk a little it is still swollen.
Q. What do you miss the most?
A. Eating
Q. What else should people know about this process?
A. Try to keep a positive attitude. You can get past this.
Final Thoughts From Lee- This is a brutal treatment and there are a lot of requirements for care management, but if you do everything the doctors and specialist suggest, I think it will make things easier. They've had a lot of experience and have seen it all. I think the stage and location of the caner has a lot to do with the side effects of radiation. While I was going through treatment, there were some patients that were worse off and some that fared far better.
For The Temporary Transfer
What We Did:Rented a one bedroom apartment on Brompton Street
Rent plus utilities, cable, and internet was about $1,250 a month
The apartment offered shuttle service to MDA for
$2 each way
We had our truck
We brought our dog and that limited our choices of living
arrangements.We also brought the necessities for the living space
Where to Stay if Your Headed to Houston
There are non profits that offer living from free and up. Go to joeshouse.org.
They do not allow pets and you will need a caretaker with you.
The Family and Medical Leave Act allows for unpaid leave up to 12 weeks with job protection.
The shorter the lease term, the higher the rent.
A Rent locator can help find a place to live. This is a free service.
There are not as many options if you bring a pet.
You can also rent a hotel short term.
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| Main building |
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| Mays Clinic |
A elevator on floors 9 & 10 and
G elevator floors 1 and basement
He had different appointments in the Mays clinic
With MDA, all of his appointments were just a short walk and elevator away.
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| Parking garage 10 |
Parking in garage 10 costs between $5 and $14 a a day
There was always space
There is free valet parking for radiation treatment
A Little More About MDA
Meet with about 50,000 head and neck patients each year.
In 2012 MDA provided cancer care for about 115,000 people. One third of those were new
patients and one third of patients come from outside of Texas.
US News & World Reports ranked MD Anderson as the top hospital in the nation
for cancer in 2013.
It employs approximately 19, 290 people
It is the number one in grants awarded and total grant dollars.
There are approximately 1,248 volunteers at MDA.
