Coping with cancer

Published in InterAction 57, Autumn 2006

We regret that our medical advisers cannot respond to individual enquiries.

Dear Doctor: What effect will cancer treatments have on my M.E.?

I’ve recently been diagnosed with breast cancer and am concerned about how the chemotherapy and radiotherapy treatments I require may affect my existing M.E. symptoms, especially as I’m intolerant to a great deal of medication.

Can your medical advisors offer advice on ways to limit the side-effects of these treatments and lessen the prospect of a major relapse in my M.E.? Are there any supplements, dietary or lifestyle changes, complementary therapies or a detox regime which will help my body cope with the harmful effects of chemo and radiotherapy or which may help prevent a recurrence of the cancer? I’ve also been told about an oestrogen-suppressing drug called Tamoxifen which can help prevent future recurrence of breast cancer but am unsure of the pros and cons of trying this rather toxic drug when you have M.E.

Name withheld by request

AfME principal medical adviser, immunologist Prof Tony Pinching responded:

This is a difficult situation, and your worries are very understandable. There are no systematic data available, so I can only offer general advice and some anecdotes from my clinical experience.

The impact of cancer to anyone is massive, and when it is added to the previous burden of CFS/M.E., there will obviously be potential for interaction between the conditions and their treatments. It is inevitable that the cancer treatment will have added urgency and priority, because of the risk of late or inadequate treatment on life and well-being.

As with M.E. itself, each person is individual in their experience of the effect of cancer and its treatment on their lives, and the interactions will also vary. Chemotherapy and radiotherapy have a reputation for causing side effects, and this is not just a myth. But treatments have been refined and improved to maximise benefit and minimise adverse impact.

Most of the adverse effects are experienced during the therapy and don’t continue for long afterwards. The cancer specialist will be able to advise on the usual impact, and any alternative options, though they are unlikely to have had much experience of people with M.E. However, if you ask how “delicate” patients are affected, such as those with other conditions or older age, it may give a useful clue. Where possible, your cancer specialist could discuss available options with your CFS/M.E. specialist.

Experience among my patients having cancer treatment, including breast cancer, is that the effects of chemotherapy are usually no worse than in other folk, and they don’t seem to cause long term problems for the M.E.

In a few patients, M.E. symptoms have even improved during chemotherapy, sometimes remaining improved to some extent afterwards. I couldn’t see any obvious pattern to the different treatments used. But biologically it is plausible that some cancer treatments, by suppressing cellular activity, might reduce the over-activity of immune mechanisms that may be in part responsible for CFS/M.E., as discussed in a recent issue of InterAction.

One such patient didn’t get that same benefit when she was switched to the new drug Herceptin, which would fit with its different mechanism of action.

I don’t have much experience with patients taking Tamoxifen, which again works in a different way to block hormone receptors on cancer cells, but as it could modify hormonal balance generally, this could affect M.E. either way and not predictably.

I am not convinced that any of the proposed supplements, diets and other therapies that you mention have a generalisable benefit in this situation, whether to reduce toxicity or work against the cancer. Inevitably there are some patients for whom such-and-such seemed to make a difference, but the such-and-such is always different.

There are, as ever, many claims, but evidence is scarce. On the other hand, one should assume that the cancer and its treatment will be an extra drain on energy, and that one should reduce other activities to make space for this as part of your pacing regime.

Medical herbalist, researcher and biochemist Dr Chris Etheridge responded:

In my experience of treating patients with both M.E. and cancer, natural therapies such as dietary modifications, nutritional supplements and herbs can greatly reduce the side effects of chemotherapy and radiotherapy. Indeed, natural therapies may actually improve the benefits of some orthodox treatments by working synergistically to improve the outcome.1

The key side effects that will be of most concern to people with M.E. are of course immune dysfunction and extreme fatigue, which can sometimes follow chemotherapy and radiotherapy. There has been research carried out into the similarities and differences between fatigue after breast cancer treatment and in M.E.2, and in my opinion there is much that can be done to counteract this fatigue.

Good nutrition plays a vital role in the battle against cancer. Patients who have the correct nutritional status are better able to fight off infection and recover from their illness, and to tolerate chemotherapy and its sideeffects.1 High protein intake can be very beneficial during chemotherapy, when patients may require up to 50% more protein than usual. This is necessary to keep muscle healthy, support the lining of the gastrointestinal tract, heal damaged tissues, increase red blood cell and platelet numbers, boost the immune system and ensure adequate energy. I would recommend high-protein smoothies as an excellent way to increase protein intake. They can be made from powdered whey or pea protein, mixed with soya milk, rice milk or water.

Fresh vegetable and fruit juices are also excellent for reducing fatigue, as they supply vital nutrients, aid the digestive process and ensure adequate hydration. Many patients have told me that drinking two or three freshly prepared juices per day has greatly increased their energy levels. However as cancer appears to prefer acidic conditions, I would advise you to avoid citrus, rhubarb and spinach.

Your diet should also contain a wide range of fresh fruit and vegetables, grown organically and locally if possible. This is essential to ensure that your body’s immune and detoxification systems are functioning at the highest level possible. Dehydration can be a common cause of some of the side effects of chemotherapy and radiotherapy – especially fatigue – as without adequate water, the liver and kidneys cannot detoxify drugs and toxins and remove them from the body efficiently.

Some nutritional supplements have been shown to be helpful in both M.E. and breast cancer, and in my opinion these are safe to take during chemotherapy and radiotherapy.1,4,5 I generally suggest that patients take a range of supplements to improve their nutritional status, and therefore the function of their immune and detoxification systems. Examples of useful supplements include: multivitamins, antioxidants, coenzyme Q10, indole-3-carbinol, green tea extract, curcumin and maitake (a Japanese mushroom extract), all of which can help to reduce fatigue level sand boost immunity.

Additionally, I’ve found that some Western herbs can be useful in supporting the immune system, aiding detoxification, stabilising energy levels and generally helping the body during the stresses of chemotherapy andradiotherapy4. Luckily, there is a great overlap between these herbs and those that have been shown to be useful in the treatment of M.E.5,6 Examples include coneflower (Echinacea angustifolia), Siberian ginseng (Eleutherococcus senticosus), liquorice (Glycyrrhiza glabra), milk vetch (Astragalus membranaceus) and pau d’arco (Tabebuia impetiginosa). I have also found that a herbal detoxification regime, started four weeks after the chemotherapy or radiotherapy has been finished, can help to normalise energy levels.

Dietary modification, nutritional supplements and herbs can all be used safely and successfully as an adjunct to various normal cancer treatments. However, it is essential that a qualified practitioner ensures that the supplements and herbs you are taking are the right ones for you and that they will not interfere with any of your medications. Qualified local medical herbalists who can advise you on all of these issues can be found at www.phytotherapists.org and www.nimh.org.uk.

Dr. Chris Etheridge has published numerous papers on gene therapy while a Research Fellow and Junior Lecturer at St Mary’s Hospital, London. A practicing medical herbalist, he is also Director of Research at Cancer Options, a private clinic in London.

References for Dr Etheridge’s comments are available on request.

M.E./CFS specialist and Secretary to the British Society of Ecological Medicine, Dr Sarah Myhill responded:

Radiotherapy produces its malign effect on cancer through the local production of free radicals. Obviously this is totally desirable because these free radicals kill the cancer cells, but they also have a very damaging effect on normal cells.

There is good evidence that the side effects of such treatments can be ameliorated by paying attention to antioxidant status. One can either do this ‘blind’, i.e. without having blood tests, by taking a good antioxidant supplement (containing vitamins A, C, E and selenium), or by measuring these vitamins’ levels, together with other important antioxidants such as superoxide dismutase and glutathione peroxidase. Biolab in London offer such tests including postal kits so your GP can collect the sample and you can send it off ‘special delivery’, but results must be sent to a qualified practitioner.

The main chemotherapy for breast cancer is, of course, the anti-oestrogen drug Tamoxifen, but before starting that, one should ensure that the tumour is an oestrogen-sensitive one. You need to discuss the pros and cons of this with your oncologist. It sounds from your history as if you have multiple chemical sensitivity so it’s possible that you won’t tolerate this drug.

One should also avoid oestrogen mimics in the environment, such as the phyto-oestrogens (largely contained in soya products) and synthetic oestrogen mimics such as the organochlorines of which the most common is lindane, now banned in timber treatments but still found in sugar beet (White Spoon) which is a major sweetener in many food products.

I would probably recommend a fat biopsy to measure lindane levels (Biolab again), or even DNA adducts to see what is stuck on to DNA. If one had organochlorines then I would recommend a sweating regime to reduce the load (e.g. in an infra red sauna). If one had heavy metals then chelation therapy may also be appropriate. This is because toxic overload has been linked to some cancers (refs on request from the Ed).

Linda Cairns, who’s been through both M.E. and breast cancer, is a specialist support worker at the National M.E. Centre (NMEC) in Essex, and NHS Expert Patients’ Programme trainer and leader. She explains:

When I found a tender lump in my breast the doctor said it was “probably a cyst, and tender as you’re run down”. He requested a mammogram but didn’t put me on the ‘two week list’ for urgent cases. I do think that if I hadn’t had M.E. my GP would have taken the lump more seriously. So, although most are indeed benign cysts, don’t be fobbed off if you find a lump. My path of treatment was five months chemo first, then lumpectomy and lymph gland clearance, nine weeks radiotherapy, and a hysterectomy, followed by double mastectomy and reconstruction.

Reconstruction has left some scarring but I feel happy with my body image – I now have a cleavage and pert breasts that will stay that way. After chemo my M.E. was 80% better. I think it was because my body had to rebuild itself and it seemed to correct the M.E. Another bonus! Everyone’s experience is different, depending on the type and grade of your cancer. Throughout my treatment I asked lots of questions to feel more in control and to avoid the stress that feeds M.E. Here are a few tips that worked for me:

• Be assertive and explain why you have fears, if you do. Make a list of questions to ask your doctors about the effect of treatments. If possible take someone to appointments for support and company.
• Avoid stress. Easier said than done I know. But this is a time when you must put yourself first. Learn to say NO! Pace yourself, rest and accept any practical help that is offered. Save your energy to fight the cancer and support the body.
• Remember chemotherapy is an aggressive treatment, so if you’re feeling rough during chemo it means it’s working. If you get any side effects don’t suffer in silence, ring up the chemo ward and seek advice.
• If on chemo, drink plenty of water.
• If feeling sick eat white bland foods, like rice and cauliflower. Avoid bright and spicy foods.
• If you get a bad metal taste in your mouth, (which is common), try sipping lemon juice diluted in water before a meal as it refreshes the pallet.
• After all your chemo is over, drink a course of probiotic drinks to help rebuild the good bacteria in your stomach.
• Use antibacterial mouthwash everyday as soon as you know you are having chemo and throughout treatment, as it helps to prevent mouth ulcers.
• Chemo weakens your defences to infections so an antibacterial soap such as Cidal may help.
• If you’re having radiotherapy, try doing a relaxation practice while on the table to help you lie very still. There is no pain at all; it’s just like having an x-ray.
• If you have lymph gland clearance done, take care not to injure that arm, as even a small cut on the end of your finger can swell up the arm causing lymphedema. If your arm starts to look red, feel hot or swell, contact your breast cancer nurse or GP.
• Should you experience hair-loss, try Wella’s sensitive treatment hair mask on your scalp once a week to cleanse hair follicles.
• If you buy a wig, take along the people you trust and seek their advice about what suits you. Shorter wigs are less likely to move about and the special shampoo will keep your wig in top condition. You can get a £50 NHS voucher to spend at the NHS wig shop.
• Take special care of yourself after your treatment is finished because in addition to physical fatigue, the psychological effects can also have a big impact on your energy levels. Sharing your feelings with someone who cares will ease the stress.

Linda can be contacted c/o Karen Walshat the NMEC

Further information

Anaesthetics and operations
See ‘dear doctor’ column from InterAction 51 (2005; p38-9). For advice on hospital stays, see our feature this issue on page 34 and also in InterAction 36 (2001; p6-9).

Breast Cancer Care
Freephone 0808 800 6000, Mon-Fri,9am-5pm and Sat 9am-2pm. Provides medical factsheets, and this summer launched their free magazine Vita, with the first issue including a feature on ten tips for living with fatigue. Visit the website for ‘ask the nurse’ e-mail service, chat forums, sharing of patient experiences, benefits advice, and verdicts on new drugs.

Cancerbackup
Freephone 0808 800 1234 (led by specialist cancer information nurses),Mon-Fri, 9am-8pm. Provides 70 booklets and 260 factsheets covering all types of cancer; screening, therapies, treatments and trials; managing symptoms and side effects; practical advice e.g. on diet; and emotional support – all free.

Macmillan Cancer Relief
Freephone 0808 808 2020, Mon-Fri9am-6pm. Has an emergency fund to help with expenses such as parking fees for radiotherapy appointments or taxis if needed for those short on funds.