Advanced disease can cause many changes to the body. The changes include dramatic weight loss, swelling of the legs, loss of hair, thin nails and skin which bruises easily. There may be other changes too which you may have noticed in your loved one. The changes can leave us feeling helpless and may be an unwanted sign of disease progression.
Weight loss is a common problem. It can present quite early in patients who have cancers of the upper gastrointestinal tract, but it is seen in nearly all patients by the last weeks of life whether they have a cancer or a non-cancer illnesses. By the time the weight loss has become established, families have tried everything including high protein shakes, multivitamins, and frequent small high energy meals–but the weight just keeps dropping off. This degree of weight loss has a medical name called cachexia (ka-kex-ee-uh). This word comes from the Greek words kakos, meaning bad, and hexis meaning condition. The information below talks about a specific type of weight loss called “refractory cachexia”. This means the underlying disease has reached a point where it is un-responsive to anti-cancer treatment and reversal of the weight loss seems no longer possible.
“He’s just skin and bone–I’ve tried everything to get him to put on weight but nothing I do seems to make a difference” Mrs TP
Cachexia is a wasting syndrome in which both fat and muscle seem to melt away. This is caused by the presence of the tumor: Both the body’s own immune system and the tumor produce powerful substances (cytokines) which travel through the blood stream and exert a catabolic effect. This means it is a complex metabolic disorder which is quite different to “starvation”. It is very important that you ask your doctor to explain to you the difference between starvation and cachexia. Your loved one is not “starving to death”.
Cachexia is one of the most devastating symptoms of advanced disease– up to 75% of cancer patients suffer from this condition. Men often describe feeling ashamed of their bodies because of the dramatic weight loss: Women who are caring for partners (or caring for children) with this degree of weight loss have usually tried everything to stop the weight loss and may feel it is a sign that they are “failing at their job”. Of course this isn’t true but it is difficult to witness the “fading away” and be unable to help.
“I feel so ashamed of my body. I don’t want anyone to see me. I used to be a big strong bloke but look at me now” Mr RS
Many patients describe a syndrome which includes loss of weight, loss of appetite and intense tiredness. The weight loss has nothing to do with how much or how little is eaten, and even giving “food through a drip” or directly into the intestines via a “feeding tube” makes little difference to the rapid weight loss. This is because cachexia is a complex metabolic disorder driven by the effects of the tumor itself: The tumor by-products and the body’s response to the tumor results in a state of metabolism where muscle and fat are consumed at a fast rate.
“Weight loss and problems with nutrition may also be a significant emotional burden, as nutrition and nutritional status have a central position in the concept of health and wellbeing for many patients and care givers, and weight loss and inadequate nutritional intake can lead to anxiety and hopelessness.”
(Radbruch L, Elsner F, Trottenberg P, Strasser F, Fearon K: Clinical practice guidelines on cancer cachexia in advanced cancer patients. European Palliative Care Research Collaborative; 2010.)
Click the blue link below to download a PDF questionnaire which you can help your loved one to fill out. Show it to your palliative care doctor or nurse who will be able to help with the developing a management plan to suit your needs.
Click for the cachexia symptom questionnaire: Anorexia Cachexia Symptom Questionnaire
What can be done?
Everyone should benefit from the palliative care approach which integrates physical and psychological care and symptom control. For refractory cachexia the goal is not reversal of weight loss, but focus on symptoms related to the weight loss (mood, energy, appetite, shortness of breath) to improve the overall sense of well-being.
There are treatments which are constantly being assessed and people should have equal access to appropriate assessment and management of cachexia whether they are being cared for at home, in hospice, or hospital.
Firstly, try to create a pleasant and relaxed environment for meals. Make sure that food is as easy to digest and as appetising as possible. If swallowing is difficult then consider nutrient-dense drinks. Some favourites include custards, ice cream, flavoured jelly, scrambled eggs with cheese and chicken soup. For longer a lasting energy boost, have dark chocolate available to snack on at the table. There is some evidence that relaxation training around meal time, and nutritional counselling by someone highly qualified in this area can improve nutrient intake and quality of life.
What about “tube feeding”?
- There are some people who may benefit from feeding through a tube that goes into the stomach via the nose or into the intestines via a hole in the skin. But it is important to remember that because cancer cachexia is not caused by a lack of food, giving food through a tube will not reverse it. Tube feeding may have a role in patients who are still having lengthy chemotherapy but are unable to maintain sufficient caloric intake. In advanced disease, the stomach and intestines stop functioning and imposing food on the body in this setting can cause more problems including pain, diarrhoea, bloating, nausea and bowel obstruction.
What about “food” going into a vein?
- This is called parenteral nutrition. In this process a mixture of artificial nutrition is slowly delivered into a vein. This might be considered in someone who is reasonably fit with a prognosis of longer than 3 months but whose intestines have stopped whose intestines have stopped working (and are therefore unable to absorb food).
- Because it is an “un-natural” process, there can be a number of complications, including life threatening salt and potassium imbalances, and severe infections. Many studies have shown that parenteral nutrition does not improve quality of life and does not improve survival (Bosaeus 2008; Torelli 1999).
- The American College of Physicians (American College of Physicians 1989) stated in 1989 that parenteral nutritional support was associated with net harm, and that in cancer patients no conditions could be defined in which such treatment appeared to be of benefit.
Supplements of vitamins and minerals (From the clinical practice guidelines in cancer cachexia available at caresearch.com.au)
In an overview on three controlled studies, one of them in cancer patients, with a combination of ß-hydroxy-ß-methylbutyrate (HMB), arginine and glutamine Rathmacher et al (Rathmacher 2004) demonstrated an overall benefit with an increase in lean body mass, improved emotional profile and less weakness
Supplementation with Medium Chain Triglycerides lowers the production of tumor by-products in cachectic patients and in combination with hydrolyzed casein protein led to better weight maintenance during radiotherapy
The use of very large doses of vitamins, minerals or other dietary supplements is not recommended. High dose supplements may even be harmful. For example as beta-carotene supplements have been shown to increase the rate of recurrence of lung cancer.
Most of the research in this area has been done on patients without advanced disease who have a curable illness. But there is some evidence that endurance exercise can combat cancer fatigue and resistance exercise (strength training) can lessen the speed of weight loss and improve muscle mass. There may be some benefit (in improving mood and well-being) from massage and gentle supported physical therapy even if the patient is confined to bed.
Thalidamide is a novel medication which in th future may have some benefits for improving muscle mass and sense of well-being in patients with cancer. At this stage though the European Clinical Guidelines on cancer cachexia in palliative care do not recommend its use because good quality research is lacking.
- THC (cannabis) has been shown to increase appetite in some patients but there are a large number of people who suffer side effects and studies show it does not improve overall quality of life or outcome.
- Omega 3 Fatty acids including EPA: There are some suggestions from the research that supplementation may be helpful. Side effects can include nausea and vomiting however and so far there has not been any good quality research showing much benefit. It small doses it is unlikely to cause harm, and has been shown to be helpful in other ways including as a mood stabiliser. Fish oil also has some benefit in improving pain from rheumatoid arthritis for example.
- Megestrol is a steroid hormone (a progestin) that improves appetite and can improve weight gain. The European Clinical Guidelines on cancer cachexia in palliative care suggest that progestins should be considered for patients with refractory cachexia and with anorexia as a major distressing symptom.
- Steroids (like prednisolone or dexamethasone) may be beneficial in patients with refractory cachexia for stimulation of appetite and improving in quality of life. They should not be used for this purpose for longer than a few weeks because of the side effects including muscle weakness, increased risk of falling over, thin skin and fluid retention.
- Maxolon (metaclopromide) is a “pro-kinetic” which helps empty the stomach and keep the bowel moving. It is recommended in patients who feel full quickly, and those with chronic nausea or trouble with a sluggish bowel. It does not improve nutritional status.
The use of medications has to take into consideration how much time your loved one has left, compared with the time medication may take to have an effect, as well as any side effects which may make thinks worse. It is important to have a relaxed attitude to meal times and make them as enjoyable as possible. Getting some professional counselling can help if you or your loved one is struggling with the changes to their body–especially if they are becoming depressed. Most palliative care teams have a social worker who is skilled in discussing these things.