Interferon experience

My experiences as a melanoma survivor

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Location: Johannesburg, South Africa

Saturday, September 15, 2007

Week 76 - Perspectives

One needs a little distance from events before one can put them into proper perspective. I suppose international conflicts are good examples: Who today can really reflect on the American invasion of Iraq? Who knows how the situation in Darfur got to where it is today, and how it is going to turn out? Is the world really going to do anything about global warming before we have changed the planet beyond the point of no return?

Big questions.

The same applies to cancer. When you first discover you are affected, your whole world changes. All the plans and ideas you had in the past are thrown out the window. In theory you look at all the new alternatives, and map out a future and then carry on, right?

Not really. Unfortunately cancer, and HIV/Aids, and tsunamis, and motor accidents all have such a large impact that we struggle just to survive. It is very difficult to look forward to the future, and make plans.

I certainly found this to be the case. I have been free of interferon now for almost six months, and only now can I get some perspective on where I have been and where I am going. During that long year my attention was focused simply on survival: Put one foot in front of the other; do the right things; keep going.

Although I certainly had some long-term plans for the future, these had to take a back seat. I tried to get started with some projects, such as building a new house for our retirement, but couldn’t make any real progress. So many things were put on hold.

So, where am I now?

Well, the interferon treatment is just a bad dream from the past. I have put looking after myself at the top of my priority list – I try to eat right, I go to gym 3 times week, I watch myself carefully and visit my dermatologist regularly.

I continue to be interested in all aspects of cancer, but must admit that I don’t read all the blogs as much as I used to. I attend cancer support group meetings, but only if I don’t have anything more interesting to do!

The main problem I have, if you can call it a problem, is that I have far too many interesting things to do. Over the last year I built up a backlog of tasks, projects and ideas which needed doing, and now I’m trying to catch up. And I’ve had to do some serious soul-searching about my priorities – One just cannot do everything. So many things are still sitting on that list and will just have to wait until the time or opportunity presents itself.

I suppose the most significant thought is this: I was happily busy with my life when cancer came along and booted me up the backside. But painful as that was, I got through it. And there is life on the other side.

Monday, July 02, 2007

Week 66 – Oxygenation, Vitamin C & Anti-oxidants

A couple of weeks back I attended the monthly meeting at my local cancer association. This is a kind of a cross between a support group and a general information session.

The speaker for the evening was to talk on “integrative medicine”, and I didn’t really know what to expect. Well, it turned out that he was a trained medical doctor, but also a homeopath, and the term “integrative” means that they try to integrate both conventional medicine and other treatments.

As the session went on, I found that I was getting really annoyed and cross with the presenter. I argued with him a few times, and after a while I decided to leave, as otherwise I was going to have a stand-up slanging match, and spoil the session for everyone else. I felt he was behaving as a charlatan, and this to a group of people with serious problems and serious concerns. Let me give you a few examples:

>>> He mentioned that he was giving one of his patients either oxygen treatment or ozone treatment – I can’t recall which it was. I know that there is absolutely no benefit to be obtained from these so-called treatments, and they can also be downright dangerous. To give the impression that this is accepted medicine is downright dishonest.

Those who support oxygenation claim that toxins damage the oxidative metabolism of normal cells which then regress into anaerobic metabolism, resulting in cancer. Hydrogen Peroxide and ozone are the substances recommended. The original claims were made over 50 years ago, and are extremely simplistic approaches to complex problems. There are no reputable published studies to support any of the claims made for these substances.

>>> He made an unsupported statement that the “majority” of drugs and medicines prescribed by doctors today have not been properly tested, and in fact are simply sold by pharmaceutical companies on the basis of dubious theories. He may in fact have been referring to the practice of using some medicines for purposes for which they have not been tested or certified (“off-prescription” usage) but this was not how I understood him. It seemed to me that he made the statement in order to justify the fact that many homeopathic remedies have not been subjected to proper testing, and without published results.

>>> I know that vitamin C is important in one’s diet. However, he perpetuated a belief that vitamin C in very large doses could cure or avoid all manner of ills.

In 1970 Linus Pauling claimed that taking 1000mg of vitamin C every day would reduce the incidence of the common cold by something like half. In 1976 he recommended even higher dosages, and by 1986 had expanded the benefits to include protection against heart disease, cancer and other diseases of aging.

I quote from a reputable source: “At least 16 well-designed, double-blind studies have shown that supplementation with vitamin C does not prevent colds and at best may slightly reduce the symptoms of a cold.”

His claims that high doses of vitamin C could delay the onset of cancer are equally misleading and unproven, and I will not detail them here.

To refer to Linus Pauling as a Nobel prize winner is misleading, in that it leads one to think that it was for his work on vitamin C that he was so honoured. In fact, Pauling’s first Nobel was awarded in 1954 for chemistry, and the second in 1962 for peace. There is no doubt that he was an intelligent person. His interest in vitamin C only developed later in life, and he continued to produce ever more radical statements. He died of prostate cancer at the age of 93.

>>> Another area which disturbed me was his insistence that antioxidants can greatly assist in preventing heart disease, cancer and other conditions associated with aging.

So far, the results of clinical trials have been mostly negative. There is epidemiological evidence indicating that greater antioxidant intake is associated with lower risk of disease. There is some argument for additional supplementation of vitamin E. However, once again it appears that the major benefits are obtained by consuming a balanced diet with emphasis on antioxidant-rich fruits and vegetables and whole grains.

I could bring out some other areas which annoyed me, but I think the above is sufficient to get my point across.

The presenter had access to a large amount of information which he slotted into his presentation: Facts, figures and statements, as well as highly technical arguments. And much of what he said was above reproach, and good advice. As with the AIDS-denialists, it is difficult for the layman to understand what is being said, never mind question the details and supporting information. The result is that people go home with reinforcement of “popular” misconceptions.

And this is what I object to: Any cancer organization should be seen as providing up-to-date and reliable information. It should not allow itself to be used as conduit for questionable ‘cures’ and quacks.

The audience consisted of a wide variety of people with one thing in common: They are cancer patients. Some are in remission, as I am, and grateful for it, but keen to learn more about it, and what they can do to prevent recurrence. Others are recovering from surgery, or on radiation or chemotherapy, and not sure what is going to happen to them. One or two have very serious problems for which they have been told there is not much further that can be done. All of these people are under stress, and some will be clutching at straws.

There is much to be said for being optimistic.

But I really object to the presentation of ideas which are downright misleading. It may lead to people rejecting what their more conventional doctors say or recommend. Or it may lead to people putting their faith in a questionable therapy, and delaying the correct treatment until it really is too late.

Saturday, June 23, 2007

Week 64 -Why do we fight

Why do we fight against cancer? Once you have cancer you are surely going to die. Maybe you can postpone the inevitable, by surgery, chemo or positive thinking, but sooner or later it will catch up with you. Surely we should simply recognise the facts, get our affairs in order, and resign ourselves to the inevitable?

I have read many stories of people who developed cancer or other serious diseases, and the main thread is always of someone fighting and fighting, gloriously, until the bitter end. Even the obituary that reads “… after an illness bravely borne…”. As if we go into battle knowing that the odds against us are stacked, and show enormous bravery in the battle.

Is it really like that?

An old friend of mine was ill with lung cancer. Not a serious problem, he said. Just one or two spots in the lungs. We’ve caught it early. We’ll cut them out, and after a few weeks I’ll be back at work. Well, it was not quite so simple, and they had to remove much of one lung. I wanted to visit him, but he said “Wait until I’m a little stronger.” Well, he did recover somewhat from the surgery, but the cancer had spread, and new spots appeared. After more surgery, he continued to be optimistic. And indeed did appear to be recovering, even went in to his office for a while. But the cancer spread more and more. And eventually he passed away.

Surely he should have known at the start that his end was near, and not bothered with all the surgery?

Over the last few years I have read many similar stories. I read again and again of someone who has stage III or stage IV melanoma, going through surgery and various kinds of therapies. Much pain and suffering, both for the patient, and for friends and family. I think “Why is this person doing all of this?” Surely it’s obvious that it has progressed too far for the current state of medical science to do anything about it. Surely he can see the writing on the wall, and should rather concentrate on what is most important – living out the remainder of one’s life, however short it may be, without entertaining false hopes of a miraculous recovery?

Why do we fight? That is the question.

For me the answer is tied with why we live and survive in the first place. Living in the modern world, with our knowledge, education, high living standards, communication and all the rest, we do not see what a battle it is just to survive. To be brought into the world. To be nurtured until we can stand on our own feet. To get enough food to eat. To be protected from the elements. To avoid accidents. To avoid threats from animals and other tribes, who would be only too pleased to take over our possessions, caves, animals, families, … To fight against diseases.

So, when I cut my finger and blood flows, do I roll over and wait for death? No, that would be stupid. I will fight against it, give myself time to recover, and have a reasonable chance of surviving.

If I break my leg and cannot walk? What then, shoot myself? Of course not. I give it care and attention, and with time and luck and good care it heals, and I can walk again, even forget it ever happened.

And so we get to the more serious afflictions. Whatever happens to me, I try to work out the best way of getting around it, the best way to recover. Whatever it takes.

And so it is with cancer. We are learning much about cancer: How to avoid it; How to cut it out; How to fight it with medicine and radiation. And not all of these will be successful.

But to give up?

The answer lies in one word: Hope. If we are not able to look forward with hope, then the battle is indeed lost. We need to keep hope alive, whatever the odds stacked against us. And this means to fight: With everything we have at our disposal. With surgery, medicines and drugs. With prayer. With positive thoughts. With music. With love.

Is it so surprising that people fight to the very end?

Written in memory of John, Bob, Robin, Margie, Sarah, Kim and all the others out there who have fought the good fight.

Monday, May 21, 2007

Week 59-60 - Season of mists

Windy Autumn leaves

I have not had much to say relevant to melanoma and interferon, except that it is SO........ nice to feel normal again, be able to exercise without fatigue, and get back to all the things I want to do.

We have had a very mild Autumn here on the highveld - "... think warm days will never cease" - But the winter has at last arrived, and with a vengeance. From daily temperatures around 23-25 C, our minimum this morning was -1.2 C, and now at midday it has got as high as 7.5 C! Lovely blue skies, and I am working in my study with two very happy dogs lying on the carpet in the sun.

I have always loved Keats' work, and I'm sure you won't mind a little reminder...


To Autumn
by John Keats

Season of mists and mellow fruitfulness,
Close bosom-friend of the maturing sun;
Conspiring with him how to load and bless
With fruit the vines that round the thatch-eves run;
To bend with apples the moss'd cottage-trees,
And fill all fruit with ripeness to the core;
To swell the gourd, and plump the hazel shells
With a sweet kernel; to set budding more,
And still more, later flowers for the bees,
Until they think warm days will never cease,
For summer has o'er-brimm'd their clammy cells.

Who hath not seen thee oft amid thy store?
Sometimes whoever seeks abroad may find
Thee sitting careless on a granary floor,
Thy hair soft-lifted by the winnowing wind;
Or on a half-reap'd furrow sound asleep,
Drows'd with the fume of poppies,
while thy hook spares the next swath
and all its twined flowers:
And sometimes like a gleaner thou dost keep
Steady thy laden head across a brook;
Or by a cyder-press, with patient look,
Thou watchest the last oozings hours by hours.

Where are the songs of spring? Ay,where are they?
Think not of them, thou hast thy music too, -
While barred clouds bloom the soft-dying day,
And touch the stubble-plains with rosy hue;
Then in a wailful choir the small gnats mourn
Among the river sallows, borne aloft
Or sinking as the light wind lives or dies;
And full-grown lambs loud bleat from hilly bourn;
Hedge-crickets sing; and now with treble soft
The red-breast whistles from a garden-croft;
And gathering swallows twitter in the skies.

Friday, May 11, 2007

Weeks 56-58 – Cancer can be good for you

Apologies for not updating for the last couple of weeks. Just been very busy!

Read an interesting article last week, on prostate cancer. According to a study at the Audie L Murphy Veterans Hospital in San Antonio, men diagnosed with prostate cancer live as long as or longer than those without this diagnosis. They speculate that this is thanks to increased preventive and other therapeutic interventions for other medical problems. [Walsh RM and Thompson IM. Prostate cancer screening and disease management: How screening may have an unintended effect on survival and mortality—The camel’s nose**. The Journal of Urology 2007;177:1303-1306.]

The argument is basically as follows: After diagnosis with prostate cancer, which may not be immediately life-threatening, the patient is subject to other investigations, with a view to improving his chances of success if any surgery or other treatment is attempted. These investigations uncover other unrelated problems, which can then be treated. For example, heart problems would place the patient at further risk. Treatment to reduce or avoid these risks then leads to an improved survival rate, quite apart from the treatment for the basic condition.

Now this rang a strong chord for me. When I was diagnosed with melanoma, and had got over the initial shock, and started understanding what it was all about, I asked “What can I do to improve my chances of survival?”. The answer was not very encouraging. It appears that once you have melanoma cells floating around in your body, there are very few treatments which will guarantee to expunge those cells. Some treatments such as interferon appear to improve the chances of success. But, one study even went so far as to say something like “If you are destined to suffer recurrence, there is no treatment which we can currently apply to change this situation”. In other words, medical science really has very little to offer melanoma patients.

I investigated further. Surely there is something I can do? These are a few of the actions I came up with…

I was a bit overweight, and probably not eating very well. So I had some sessions with a professional dietician, lost a whole lot of weight, and in the process changed my habits to a much more sensible and healthy diet which I am continuing to this day. It may not have any direct effect on the melanoma, but it will make a large difference to my general life expectancy: I now have my BMI down to about 25, which allows me to say “I am not overweight”. [You don’t know your BMI, or you don’t even know what it is? …]

Get some exercise! It doesn’t matter what you do, whether it is cycling, walking, pushing weights, gardening,…. Just so long as you get some regular exercise. In my case I spend long hours sitting in front of my computer. This is what I do for a living! It is so easy to be lazy, and only get up to go to the toilet, or get a cup of tea! Or open the fridge and find something to eat… While I was on interferon I found this very difficult – Any excessive exercise made me really ill for the next couple of days. But after some experimentation I found a level which worked for me on a regular basis. And the funny thing about exercise: Whatever the level, it actually gives you more energy in all your other activities. So get off that couch and start doing something – anything!

Live a more relaxed life. Not so easy… Particularly when you are on interferon, what with the bad effects on sleep patterns, and the reduced physical and mental stamina. I was getting extremely irritable at not being able to do the things I wanted to, even though I had more “free time” at home. With help from everyone I came to accept, (albeit kicking and screaming…) that my ability to do things had been reduced, and I just had to plan accordingly. However, what I was also doing was building up a backlog of things which I wanted to do… Not so easy to come to terms with!

So, what is the result of all this good advice? Well, I am looking after myself better, even if there is not much that I can do about the melanoma except hope and pray. And looking after myself must contribute to living longer, and having a better life.

Thursday, April 19, 2007

Week 55 – Cancer Support Groups

This week I went to a meeting of the local cancer support group. For one reason or another I have not been able to attend for about six months. People there are a mixture of different types of cancer, and also people at very different stages in their journey. Previously I was very focused on melanoma, and it was important to hear about other problems, and realize the wider world out there.

I found that I was in a very good mood, and tried to be helpful and supportive where I could. I’m sure this is because I am now feeling physically better after a few weeks off interferon, but also because I am mentally feeling much more positive, after my last negative scans. But the meeting was also a damper, reminding me that I am only in remission, and anything can still change.

After my lack of success (I won’t call it failure!) in trying to set up a support group focusing on melanoma / interferon patients, I realized I had lost some direction. I want to do something; play a useful role in some way.

Coincidentally a friend of mine told me a story about a youngster, probably aged about 10, getting severely sunburned through spending 4-5 hours out in the sun at a school swimming gala. No hat, no sunscreen. Apparently the school had insisted they sit out in the sun for the duration. I don’t know how much of the story was true – kids can also “improve” a story if it suits them . (What, me being cynical? Never!)

So I talked it over with another friend, this time a teacher at a school where they have a firm policy that all kids must wear a hat when in the sun – Even during 10 minute breaks.

I contacted a social worker at the local cancer association, and today went along to meet her and discuss some possibilities. Over a cup of coffee I learnt what they are trying to do, and also picked up a few useful contact names. It looks like there are not enough people getting involved in the issue of skin cancer in South Africa, and there are some serious misconceptions, so I think I have found a way in which I can play a part, and hopefully make a difference.

We have a first cut of a plan – I won’t detail it this week, but will talk about it in future blogs. Now to do some research…

Monday, April 16, 2007

Week 54 - Marguerite Barker RIP

Marguerite was taken from us on Saturday.

Margie has had some setbacks in the last few years. After a bad episode, her lung function was badly reduced, and she survived on a permanent oxygen supply. At home she had a machine which concentrated oxygen, and she could move anywhere in the house and garden, with the aid of a long plastic pipe. If she went out she had to carry a small oxygen cyclinder with her.

She was certainly at risk, but she soldiered on.

And then suddenly on Saturday she was gone.

Margie's life was always full of music, and she had many friends in the local music community. In the last few months she finally completed her PhD dissertation, in an area of music education.

Margie, rest in peace, and may there always be beautiful music with you in future.