How do you know when to stop complementary therapies
How do you know when to stop complementary therapies Hi everyone,
A friend of mine was diagnosed with a rare form of lung cancer (one not associated with smoking) four years ago. She was given a new drug called Iressa and it worked spectacularly - the widespread tumours miraculously reduced in size and are now undetectable. The medics were very pleased but because the drug was new they were cautious. Because the medics couldn’t promise anything my friend decided to back Iressa up by using complementary therapies: reiki, reflexology, yoga, art therapy, drama therapy, music therapy. She goes to see a healer several hundred miles away. She’s changed her diet - no dairy products. She injects mistletoe prescribed by the homeopathic hospital. She goes to support groups.
Now she is trapped. She knows that for a small group of people Iressa has proved very successful. But what she doesn’t know is whether it is the Iressa by itself that has worked in her case or whether it is one or several of the complementary therapies that’s working, or even all of them in combination with Iressa. As a result she is frightened of giving any of them up.
Doing all these things is time-consuming and expensive. She can’t go back to work. She is reminded of lung cancer every day. She can’t begin to get on with the rest of her life. In short her whole life revolves around keeping the cancer at bay. Her children are now six and nine and are used to Mummy going to meetings or being away at weekends. Although she is now gradually reducing the number of things she goes to there is always something new around the corner. Recently she asked me whether I thought she might be allergic to protein because she had felt ill after eating fish. I made some flippant remark about if she wanted to develop kwashiorkor (protein-deficiency disease that causes starving children to have swollen stomachs) then cutting out protein was the right way to go about it. A few days later I realised that she had probably been reading about a new (and, to my mind, dodgy) alternative therapy prescribing a protein-free diet.
I know that lots of people on this website are taking complementary medicines. How do you know when to give up complementary medicines? How do you know which ones to give up?
What advice should I give my friend?
Best wishes,
Sue
Hi Sue Your friend really does seem to have covered herself from all angles, doesn’t she? No wonder it’s become such a dilemma.
I should have thought a Reflexology or Aromatherapy once every few weeks would suffice. Yoga could be practised at home as could music and art.
Mistletoe injections might be worth carrying on with (I’ve heard good reports of these) and instead of travelling hundreds of miles for a healer (you don’t say what sort of healer - Spiritual, Energy, Reiki, Shamanic, Shiatsu?) why not find one nearer home and have one a fortnight?
She sounds a very driven, self-disciplined lady to have been holding all those balls in the air at the same time. I hope she manages to find a compromise and thereby have a bit of fun and live her life to the full.
Good luck Sue - I hope she’ll listen to whatever advice you give her.
Love Judy xxx
When to stop taking complementary medicine Thanks for your reply, Judy. I think that the problem is that all these complementary/alternative therapies have become a trap. And there is always new ones around the corner all with their supporters willing to give anecdotal stories of how they know someone who was cured.
I think that this is a really important issue for anyone using complementary therapies. Has anyone else got anything to add on this? There is going to come a time when people have to at least ‘compartmentalise’ the fear of cancer returning in order to live a normal or near-normal life. We have to live with possibility that the cancer might come back without being consumed by that fear.
Best wishes,
Sue
Hi Sue I’ve avoided responding to this before as I’m pretty opinionated about alternative medicine and so avoid this forum unless something really inflames me!
When I hear stories like your friend’s I feel a combination of sad and angry. At one level everyone has a right to do what they think is best for themesleves, but there is such a powerful alternative medicine lobby out there, fuelled by the internet , which I think can be so dmaaging.
I think many complemenatary therapies help some people cope with the process of having cancer. I’d go for the odd aromatherpay massage, but don’t fancy acupuncture, and would laugh at healing. I go big on counselling and psychotherpay which have helped me a lot.
I don’t think that alternaytive medicines make an iota of difference to outcome…how long you get to live,…and I hate the thought that so many people seem to submit themselves to punishing regimes, and then get hooked into cycles of desperation and fear that they can’t give them up…just in case. Such people often seem to me to become self obssessed…(read Gloria Hunniford on Caron Keating) so obseessed with not wanting to die that they stop the process of living…and that has bad spin offs for their family and friends.
I think any of us with cancer have to at some time to face head on our fears that we may die…and then learn in the ways we best can how to compartmentlaise those fears and live with what we have…live and celebrate our wellness as much as we can. At diagnosis when I was told what a strong possibility there was that I wouldn’t make 5 years I never thought I would ever learn to live with the fear and desperation. But it is easier now…yes the fear ‘walks alongside me’ but no its not overwhelming…its just there.
Maybe we all have to learn to know that ‘dying is not the worse thing.’ (I read that in abook by Chrsitina Middlebrook.)
As for your friend…a hard one. Maybe it wouldn’t hurt to talk about your own views, and challenge hers…what are friends for? I might be inclined to give here a copy of John Diamond’s book Snake Poison…though that would probably be a provocative step too far…but an excellent read for any other alternative sceptics out there.
Best wishes
Jane
Getting back to normal While reiki, reflexology, yoga, art therapy, drama therapy, music therapy might be good relaxation, I really cannot see them fighting cancer! Reiki and the like seem harmless provided you don’t become pychologically reliant upon it.
I do however, worry about anyone taking strange herbs etc that might affect their medication or be a phyto-oestrogen (if ER+).
Even now, I refuse to follow in any anti-cancer diet plans (Bristol Clinic, Jane Plant, Quark & Flaxseed Oil etc) because there is no scientific proof for any of them and people seem to make themselves miserable (and miss out on a balanced diet) by following them.
I think your friend needs to loosen up and get back to a more normal life? Life appears to be on hold while she makes time for these rituals.
I’ve always recommended that when you are in remission you enjoy it and put cancer to the back of your mind. I had a few good years between my primary and secondary diagnoses and could have spoilt it worrying about something i could not influence.
I really do understand people wanting to believe they can influence whether or not their cancer returns, but it seems to be pure luck of the draw. Linda McCartney was a vegan with time and money to throw at any treatment available and yet still she died from breast cancer
Quack Quack I totally agree with Sue, Jane and Holeybones and will walk with you any day rather than run myself ragged chasing the latest quack cure. I have tremendous admiration for your integrity, self-possession and courage and of all the browsing I’ve done your comments have inspired me most. We live in strange times when surrender to many different forms of irrationalism is encouraged and it takes a strong will to go against the grain. In this spirit, I’ve always admired Susan Sontag’s ‘Illness as Metaphor’ (old book now, late 70s) for its refusal to accept the fears society heaps around the word ‘cancer’, which we could do without as we’ve got enough going on with the illness itself.
What bothers me is the contemporary moralisation of
the ‘struggle against cancer’ where what is virtuous is - in the extreme case - woman with cancer who take to running marathons and such like activities in their determination to ‘beat cancer’. As brave as they are, and of course everyone finds their own way to deal with their own illness, the other side of this coin is that those who do not engage in such activities, join activist groups, devote their lives to pursuing the latest miracle cures, seek out a wide range of psychological and alternative therapies, are in some way morally deficient (and of course, the implication is that their lacking in these qualities, and pursuit of deviant lifestyles, may have predisposed them to cancer in the first place). The simple truth is that s**t happens and that is not a matter of individual responsibility, and nor does it confer any particular moral status on those it happens to.
alternative/complementary therapies Dear Sue,
I am sorry for your friend - lung cancers seem so unpleasant to deal with - but I think she will just have to take a decision to stop everything for three months and see what happens. There are no guarantees with any treatment. She seems to be suggestible to a degree, so is not exercising careful analysis af what is being promoted and why it is being promoted. I think she is also overdoing the use of the various “balancing” therapies - usually the advice is go with one. However, you do say she is reducing thigs gradually, so perhaps she is beginning to bored with all the commitment?
Alternative therapies are dangerous in that the claim is a cure, but there is no proper investigation of how and if the method/product works. Some users benefit, many others may not, and some may actively be damaged by the treatment, but it’s only the first group that is talked about. And often if you look carefully there is often a profit motive underlying a hard sell.
Complementary therapy (such as reiki, reflexology, yoga, relaxation) all show benefits to general sense of well-being in a surprisingly wide range of users. Personally | went for reiki (convenient and close) and it helped enormously to overcome extreme stress.
Supplements are another matter of discussion; some swear by them, others swear against them. There is research being done into interactions of vitamins and minerals with chemotherapies and radiotherapy. Slow but going on. There are tests that can be done to establish deficiencies, and there is often a deficiency in a cancer patient. Adjusting the deficiency won’t cure them, but will help the organism to cope.
Diet is personal, but as a general rule a diet that contains a good level of vegetable matter and seeds plus a low level of animal protein is beneficial to everyone. Dairy products is one of the great bugbears at present - most people think only of cow milk, but there is also goat and sheep and buffalo milk around, and if dairy is a minute part of the diet I cannot see it doing great harm. What the animal itself eats is as important. Her query as to protein is weird if she has been eating proteins all along and not had trouble. Was the fish fresh?
Anyhow, I do hope she finds a way forward with maybe one relaxation system, a good clean diet, lots of happy activity, and a positive attitude.
best wishes
-Message for Bernie Hi Bernie.
Its great to read something from someone who sounds like a kindred spirit…thank you.
Susan Sontag’s book is just brilliant I think…highly recommended for anyone who wants to contribute to breaking down the ‘shedloads of rubbish’ (to quote Kate Carr…Its not like that Actiually) which is written and talked about in having cancer.
very best wishes
Jane
Whew! What a relief to hear from you Jane - I thought I’d get shot down in flames for that!
Sontag ‘theories that diseases are caused by mental states and can be cured by willpower are always an index of how much is not understood about the physical terrain of a disease’.
fuel for the fire OK I accept all that you say and I too have taken issue with people who tell me that ‘my positive attitude’ will get me through this (!) however we must not be guilty of ‘throwing the baby out with the bathwater’ here.
Even if complementary therapies have nothing at all to offer, other than the placebo effect then are we right to dismiss that? Yesterday on BBC 4 a doctor stated that, in a trial (not sure for what) 40% of the people had recovered but had only had a placebo. I think we are wrong to dismiss such results as failure just because they are unexplained. 40%! If the chalk pill did not cure them then what did?
Doctors insist on treating our diseases (thank goodness) but do not/cannot treat us as individuals. The more I read, the more I realise what complex creatures we are. Our medical information is increasing at an exponential rate and it would be impossible for one Doctor to know all there is to know about one of our systems (eg immune system) never mind the whole person.
We know that people’s mental state can hasten their death (one partner dying shortly after the loss of the first is just one example) and we also know that the ‘placebo effect’ is very real; what is harder to establish is why it should work for one person and not for another. What happens in the medical profession is that these ‘miracles’ are taken as ‘odd anomalies’ in the tried and tested medical world and, for our poor relatives (and the snake oil merchants) it is seen as ‘proof’ that we can, with superhuman effort, beat the odds and make our miraculous recovery. Our loved ones ‘will’ us to get better and the medics apply ‘rationality’ and probability.
Perhaps the answer is somewhere in that very complex middle ground - the mind and body are inexorably tied, but how? I will not throw out the Herbalists, the Healers and the long distance runners and will exercise a balanced approach, taking from each what sustains me. I will continue to refuse to believe that the cancer is my fault, and will tackle anyone who says otherwise, but my belief in the body’s ability to correct itself has nothing to do with guilt. Somehow or other my body got out of balance and has the ability to regain that balance (sometimes with a lot of medical help) whether that balance can be regained is what is at issue for me - the means are not so contentious and ‘virtuous struggle’ just doesn’t register.
Thanks Bernie and JaneRA for, once again, allowing me to get ‘stuff’ off my chest - its quite cathartic and probably very good for me (joke).
Blondie
Maggie’s centres Yes I’m with you there. I’m booked to go on a Healthy Living Day and will enjoy the reflexology, reiki and whatever’s going there because its nice to have that human to human contact. I gather up all the good wishes from my family and friends and of course that has been an important contributor to my recovery from surgery and helps me get through the chemo now. Patients who are on research studies also generally do better than those who aren’t, because being monitored closely adds to their sense of well being and seems to have a beneficial effect. The Placebo effect is well known and suggests the mind can have powerful effects on health that no one understands, much less can consciously direct which is not to deny those effects. My cousin (stage 3 ovarian) insists that those with a passion for living have a better chance of surviving cancer longer and I’m sure she’s right.
I’m willing to try anything. A friend came to see me in the Royal Free as I was recovering from my mastectomy, she’d had a reconstruction done herself and we both laughed at how, having been total sceptics about organic food, we both wanted it IV if possible after dx. I try to up my fruit and veg intake because it makes sense to cut down on as many toxins as possible. When your body has to deal with chemo it can do with all the help it can get…
When I read about Charles Jenks’ Maggie’s Centres the sceptic in me baulked at the idea of ‘healing architecture’ and the whole promotion of the ‘active patient’ even though they are set up with the best of intentions. However, that wouldn’t stop me using such a centre when it comes to London. On a rational, objective level I may reject the anti-medical and authoritarian implications of this approach, on a subjective level I will use any resource available which might make me feel better or even get me out of the flat for a few hours. However, I take my brain out with me and remain critical of what’s going on.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
W. E. Henley (Invictus)
I disagree Bernie with your cousin on this one I disagree that those with a passion for living have a better chance of surviving cancer. I could rant for England on this…but just to say that such a view does an insulting disservice to us all and particularly to the thousands who die of cancer. Over the last few years too many of my friends have died of cancer…none of them wanted anything other than to live to the ‘ripe old age’ they could have expected. Cancer is no respecter of massage or reiki, of counselling or diet, of visualisation or bioenergetics. None of us gets to choose whether we die of cancer. We all can decide the way we want to live with cancer, and it doesn’t have to be with a happy clappy self help manual.
These are important issues…sorry the original thread has got a bit highjacked…we should probably be having this discussion on the hot issues forum.
Jane
Yes Jane I agree with you 100% and sorry if I appeared ambivalent - worth stating and thanks for doing so.
Jane Hi Jane,
I don’t think thinking positive will help you survive cancer although it may help you to cope with treatment better. My mum never accepted that she was dying of cancer and never gave up but, sadly, she died far sooner that expected.
However, my GP whom I went to in the depths of depression following my first chemo did say that although there was no research to prove it she said that doctors know of lots of cases where people give up hope and then seem to go down hill.
She said that it was important for me not to feel that life wasn’t worth living and that if i needed help to get over that i had to accept it.
I feel she was probably right.
Kelley
This is all very difficult. I love my cousin dearly and so I don’t want to upset her or undermine her coping mechanisms. However, I think the process of reorganising your whole life - diet, diary, family - every waking moment around ‘the fight against cancer’ is almost more debilitating than the illness itself but if it’s freaking someone out big time, what else can you expect people to do in the current climate?
I don’t blame the individual who embarks on this quest, I blame the countless new age quacks who lie in wait for us and the government which stigmatises cancer sufferers as victims of their own lifestyle choices.Only one in ten lung cancer sufferers smoked yet lung cancer only gets 4% of the national cancer research budget although it kills more people every year than breast, prostate and leukaemia combined (Lung Cancer Foundation). They do not get optimum care, information and treatment because they are thought not to be deserving of sympathy or healthcare resources as they are stigmatised as victims of their own lifestyle choices.
This climate affects all of us, as we are all exhorted to embark on a born again life of superhuman health vigilence which is the last thing we need when we are ill, especially when it is not likely to have much effect on our prognosis.
Hi everyone Hi everyone,
Many thanks for all your replies. I wish that the people who use this particular forum regularly to suggest or ask about complementary therapies had replied to say how and when they were going to cut down or stop using complementary therapies, but I have a nasty feeling that they are just as trapped as my friend is.
As far as my friend is concerned I think that I just have to be completely straight with what I think. She knows what I think but I usually avoid talking about it as I don’t want to pull away anything she is using for support but if I don’t say anything then I am colluding in what she is doing.
For those people who are using complementary therapies I want to say that they are not harmless if the result of using them means that you can never give them up or move on in your life. Please consider what you are doing. Feel free to ask for advice but also ask for scientific evidence on not only how (or if) they work but when you should give them up.
With very best wishes,
Sue
stoppng complementary therapies Dear Sue
Going back to your original posting, it seems that your friend is desperately grabbing at straws in the wind. She seems to still be in a state of shock and disbelieving. Is she computer literate? and if so does she read the Lung Cancer forums? They would be the best place for her to test her ideas, or indeed see if there is any support for them. Informed discussion doesn’t imply collusion.
As to complementary therapies, if you enjoy music or art, or are nicely relaxed and focused by reiki, yoga or reflexology, I can see no point in stopping. Financially I would be prevented from doing more than one or two.
Most people on these forums seem to be to be well-balanced and I am sure they do as you suggest, weighing up good and bad, and moving on as and when they are ready.
If there was any complementary therapy area that I feel is least well applied, it would be in the matter of diet, which is one of the most involved and contentious areas and one which can lead to real obsession.
best wishes
Phoebe
Maybe a U.S.-based lung cancer site could help Hi SuperSue,
I think that the only people who can really help your friend are other lung cancer patients. Probably a U.S.-based lung cancer chatroom would be best because then she would have a much better shot of meeting someone else who had received Iressa and done well. I have heard that Iressa works best in female non-smokers, so maybe she matches a profile and once she meets someone like her who has done well on Iressa without all of the therapies, she can relax a bit.
I don’t think that your friend’s situation is that unusual. My doctor had a patient with secondaries who wasn’t doing well, so he got her on to arimidex off trial in 2003. Well, she couldn’t wait for the arimidex to kick in, so she started taking all these supplements and I mean dozens of them costing hundreds of pounds of them a month. She actually had to spend most of her time fundraising just to pay for them and made the news because she wanted the NHS to pick up the cost and my poor oncologist had to get on the TV and explain why the NHS probably wouldn’t be doing it (because she had the arimidex).
Having two daughters and a cancer that has low survival rates, your friend is probably is really afraid. There’s a website called lungcancersurvivors.org that seems to have just the right sort of chatroom. Maybe she could at least weed out what she does.
Take care,
Christine