“I was able to get through treatment without a PEG Tube but I was told if my weight got below a certain level I would need a nasogastric tube. I lost over 20kg in six weeks. I was weighed daily for the last three weeks of treatment. I did get below my required lower weight limit but I begged the doctor for one more week to see if I could gain enough weight. I spent hours sipping liquid food and managed to gain enough weight to avoid the tube down my nose. But it was very hard to keep swallowing.”
The above scenario is not uncommon during chemoradiation for head and neck cancer. Some of us don’t have the chemo but we’ve recently had surgery and it’s all a big challenge. Some of us are determined not to get a feeding tube although many do.
I’ve always seen a lean body as the ultimate in good health but hard to attain because food is so nice. It is ironic when you get into the head and neck cancer field and find that weight loss can be a really bad thing if it is unintentional, sudden or too much.
Why do we lose weight during head and neck cancer treatment and why IS it a bad thing? Why do some of us struggle to maintain weight even years after treatment?
- After a couple of weeks of radiotherapy the oral mucosa and throat are so sore and ulcerated that eating is a pain. (This is called mucositis.)
- Pain relief and numbing medications are important so we can keep eating and drinking.
- What’s more, the taste buds have taken a hit and everything tastes like cardboard.
- To counteract these effects the dietitian is a key professional in our treatment process. You’ll see her every week, sometimes more frequently, and dietitians are hard taskmasters.
- If we lose too much weight too quickly, we’ll become weak and malnourished and won’t heal well.
- The dietitian will encourage a high calorie intake, about 3000 a day, or as one woman in our group said, the same calorie need as a construction worker. Our bodies are under serious assault during radiation.
- What’s more we need protein, lots of it, for healing. Protein is used by the muscles and sudden weight loss depletes our muscles.
- Moreover, we are measured for radiotherapy at the start to deliver the beam precisely to the tumour. If our body shrinks it is difficult for the system to keep up with the changes.
- Lots of patients who have chemoradiation have a feeding tube inserted into their stomach and some have a nasogastric tube. This is usually done before treatment when extreme pain on swallowing is expected.
“Patients undergoing this treatment frequently experience moderate to severe pain due to oral mucositis, requiring significant doses of opioids to control their pain and maintain oral intake or the ability to maintain some swallowing function. Other measures such as topical lidocaine and rinses containing a mixture of medications that vary among institutions (often referred to as Magic Mouthwash) are also used, yet topical measures are generally inadequate to control pain without the addition of systemic opioids.” National Library of Medicine.
- After treatment some patients (quite a small number) continue to struggle with low weight. They might be on a feeding tube or have swallowing problems or nausea and need help to find suitable nutrition to maintain a healthy body weight.
- “It’s important not to catabolise muscle,” says Tammy von Keisenberg who is a nurse and has been a participant in head and neck cancer groups for years. This means to avoid using muscles for energy rather than food or fat. This tends to happen if we lose weight too fast.
- During radiotherapy and for the group of patients finding it hard to maintain weight, there is no simple answer.
- We can deal with heartburn and nausea with medications like anti-nausea meds and Omeprazole – what about foods and food substitutes?
Foods and food substitutes for gaining/maintaining weight
- Ordinary Ensure and Fortisp are good for weight maintenance and bodybuilding but they are very expensive if not prescribed and most people want to eat normal food.
- Dietitians have a policy of “food first” meaning that the food supplements/substitutes are for people in dire need. Most of us can maintain weight and health via normal food. I am able to maintain the lower weight I reached after surgery but am not putting on weight and am a bit anaemic on a fully liquid diet.
- It might be a good idea to have regular blood tests to check iron and cholesterol etc
- There are dedicated food substitute products that address severe loss of weight, especially for those on feeding tubes.*
- Protein rich food is important for a healthy body when we are in danger of being underweight and losing muscle mass.
*Ensure TwoCal HN 200mL Vanilla
TwoCal HN 2.0kcal/mL is a nutritionally complete, high-calorie formula designed to meet the increased protein and calorie needs of stressed patients and patients requiring low-volume feedings. It is specially formulated calorie and protein dense nutrition to help patients gain and maintain healthy weight with protein to help support lean body mass and wound healing. Available in a 200ml ready-to-serve bottle. Use ONLY under medical supervision. Suitable for oral use and tube feeding for catabolic or fluid restricted patients.
Advice from the Dana Farber Institute
- Try to eat small, frequent meals and snacks throughout the day.
- Use smaller plates and cups as typical-sized portions often seem overwhelming.
- Try adding calorie-dense, nutritious foods such as nut butters and avocados to your diet.
- Smoothies and soups are good sources of necessary liquids and lots of nutrients.
- In addition to more calories, your body needs more nutrients and more protein. Protein is very important for the immune system, to fight fatigue, and to help maintain muscle mass.
- Ask someone to help with food shopping and preparation to conserve your energy for eating.
People who responded to a simple polls reported the following:
This chart shows how 13 out of 32 Facebook groups members can eat normally, 12 have limited food options and 7 have to take nutritional supplements to ensure an adequate food intake.
Fortisip and Ensure are calorie and protein rich – most people do not like taking them but if you simply can’t swallow adequate nutrition, they are a good safety net.
They can be prescribed by your dietitian or doctor and most long term users will receive a script for the powdered Ensure which incurs a first time cost of $5 and is then free.