Interferon experience

My experiences as a melanoma survivor

My Photo
Name:
Location: Johannesburg, South Africa

Wednesday, August 30, 2006

Week 22 - Regular as clockwork

I realized last week that I have been doing my interferon injections absolutely like clockwork – Very responsible and consistently. Every Monday, Wednesday and Friday I take a couple of tablets around 6pm, and do the injection about an hour later. I give this priority, and try not to allow other events to impact on the routine.

Having said that, I have shifted things around a bit: For example, sometimes I do a lecture on a Wednesday evening, and in that case I move the injections to Thursday and Saturday. But I always get back onto schedule by the next Monday evening. Sometimes I have to plan carefully ahead to allow me to do the things I want.

I know that many people are not nearly as consistent or reliable when taking medicine. A few examples: A fairly large proportion of people on antibiotics stop taking them or neglect to finish the course… This can be a serious problem, as the benefit of the course may not be achieved. Or even worse, it can give rise to the spread of resistant strains which are not clobbered properly at the start. In the case of HIV/Aids there are other problems: Some people do not feel they are getting any benefit. Without a positive goal they tend to neglect the medication, and so it becomes a vicious cycle – They don’t improve, so they don’t see the need to take the meds, and it becomes a self-fulfilling prophecy.

I suppose interferon is a good example: I am not actually ill from any visible disease at this time. Taking the medicine (injections) just makes me feel bad, and limits my ability to live a full life. It has no visible benefit, so it takes a lot of faith and positive thinking to continue with the regime.

In my case I am concentrating hard on all the things I need to do to make it a success, and keeping a positive attitude is no small part of the task. It takes a lot of conscious effort and positive thinking to continue week after week. I recognize that some people may have difficulty with this, and wonder how the differences between individuals affects the general statistics?

By the way: Next week we are going away to a timeshare resort in the bush. Five days in a warmer climate, some game viewing and walking, and time to just chill out and relax. I will post some pics when we get back.

Saturday, August 26, 2006

Week 21 – The antioxidant myth

A recent article in New Scientist throws significant doubt on the value of consuming antioxidants for various health reasons. (New Scientist, 5 August 2006).

We have all heard of antioxidants. A search on Google brings up over 10 million hits for the term. According to some estimates around half the adults in the US take antioxidant pills daily in the belief they promote good health and stave off disease.
“Our cells produce thousands of free radicals every day. Free radicals from the environment occur as an effect of stress, pollution and unhealthy eating habits. … Fortunately, we can protect our bodies with the super power of antioxidants.”

“Recent tests have shown that … is the most powerful antioxidant in the world, in fact, it is 902 times more powerful than vitamin E and 216 times more powerful than vitamin C.”

“… is ten times stronger than beta carotene and up to 500 times stronger than vitamin E as an antioxidant. Other unique aspects of its structure allow it to pass the "blood brain barrier", meaning it can deliver antioxidant benefits directly to the brain and central nervous system.”

However, evidence gathered over the past few years shows that at best, antioxidant supplements do little or nothing to benefit our health. At worst, they may even have the opposite effect, promoting the very problems they are supposed to stamp out.

Stephen Barrett has written (http://www.quackwatch.org/) “It is known that people who eat adequate amounts of fruits and vegetables high in antioxidants have a lower incidence of cardiovascular disease, certain cancers, and cataracts. Fruits and vegetables are rich in antioxidants, but it is not known which dietary factors are responsible for the beneficial effects. … Only well-designed long-term research can determine whether any of these chemicals, taken in a pill, would be useful for preventing any disease.”

An article on Wikipedia (http://en.wikipedia.org/wiki/Antioxidant) describes the field in some detail. What comes across is that this is an extremely complex area. The concept of oxidation is intimately tied to life as we know it. As New Scientist says, “Free radicals are an unavoidable hazard of being alive. We live in an oxygen-rich atmosphere, and radicals… are natural by-products of respiration.”

The myth dates back to the 1980s. Scientists had known for a long time that people whose diets are rich in fruits and vegetables have a lower incidence of heart disease, diabetes, dementia, stroke and certain types of cancer. The hypothesis developed that antioxidants are free-radical sponges which can stave off the diseases of old age. An additional leap was then made, that taking them as supplements or in fortified foods would decrease oxidative damage and diminish disease. It seemed an obvious conclusion...

However, over the last 20 years scientists have been putting these compounds through their paces. True, antioxidants knock the wind out of free radicals in a test tube. But once inside the human body, they appear to be bad at preventing oxidative damage, and they can even make things worse. There are some serious horror stories surrounding beta carotene supplements: In May 2006 an expert panel convened by the NIH concluded that there was no evidence to recommend beta carotene supplements for the general population, and strong evidence to recommend that smokers avoid it. Similar results exist for vitamin E, the world’s most popular antioxidant, as well as vitamin C.


Now, no-one is saying that there are not advantages to following a healthy diet. If you improve your diet, and eat many fruits and vegetables, you are bound to benefit. But it is wishful thinking if you think you can simply pop a few pill supplements each day to avoid the consequences of eating badly. And, as with iron supplements, there is the serious possibility that you can damage your health by excessive pill popping. Which brings me to an important point made, again, I think, by Stephen Barrett: For most of us, you can obtain much more significant health benefits simply by improving your diet and lifestyle: Exercise more, smoke less, eat more fruits, nuts and vegetables, and keep your weight under control.


To which I would add: Drive carefully, and don’t go out into the sun without a hat and your sunscreen!

Sunday, August 20, 2006

Week 20 – The play’s the thing, Wherein I'll catch the conscience of the king

“All the world's a stage,
And all the men and women merely players:
They have their exits and their entrances;
And one man in his time plays many parts,..”
- William Shakespeare, As You Like It, 2. 7. 139-167.

Death is one of the most popular characters in Terry Pratchett’s Discworld series. He always speaks in Small Caps. This may have something to do with, being a skeleton, he has no vocal chords.

"Of every tree ... thou mayest freely eat; but of the tree of the knowledge of good and evil, thou shalt not eat of it: for in the day that thou eatest thereof thou shalt surely die"
-Genesis 2 v 16-17.

Introduction: The man sits in a simple chair in the centre of the stage. His arms rest on the wooden arms of the chair; He does not move any part of his body while speaking.

Man: Well, my friends, things have come to a pretty pass. All my life I have been so busy doing things and acquiring goods. And I have had some successes, and also some failures. I have worked hard and played hard.

I have studied and learned about this wondrous universe we inhabit. I do not claim to understand it all, but have developed a reasonable understanding of what makes it tick, and how to make it work for me.

I have loved and been loved. I have enjoyed beauty, from the glory of the very smallest elementary particles, to the largest galaxies and the Sloan Great Wall. And the greatest beauty of all is the wonder of life in all its variety, depth and complexity.

I have laughed at humour and cried at sadness.

And I never gave much thought to the future. Oh yes, I know that life is not infinite; That one day I will die. But not really: That future seems to belong to someone else, another persona, divorced from my daily living. Even the loss of friends who passed on did not bring it home to me.

[Death appears at the left of the stage. He is dressed from top to toe in black. As is traditional, he carries a large scythe.]

Death: Well met, my friend. You have led me on a sorry dance, but here we are at last…

Man: What do you want with me, old man? What business do we have together?

Death: All men and women eventually have business with me. Surely you have heard of me? Does my reputation not precede me?

Man: I’m sure I do not know you. Have we met before? Why do you wear that dark cloak, and why is your face hidden?

Death: We have met many times before. But you do not remember…? I think the first time we met was when your grandfather Duncan died, but you were very young, and probably don’t recall anything. We met when Bob Powell died. And we met when your grandmother Bep died… And the next time was when your mother died? Are those enough to jog your memory?

Death: Allow me to introduce myself: I am Death.

Man: [Aside in stage whisper]: I don’t know whether to be impressed or to laugh out loud. Should I be honoured, that Death himself has come along to collect my soul? Wizards and other significant figures have the privilege of being collected by Death himself, but I would have expected to be met by a lesser functionary. Even Shakespeare said:

“When beggars die, there are no comets seen;
The heavens themselves blaze forth the death of princes.”
- Julius Caesar, Act II, Sc. II

Death: Let’s get back to business… You have been on my to-do list for some years now, but somehow you keep avoiding me, and I’m starting to lose patience with you.

[Aside] Sometimes I wonder why I took on this job. And it gets harder with each passing year. It used to be fairly straightforward. A small war here or there; some pestilence or famine; or a natural disaster; and I could collect souls by the thousand. But Man has learned to interfere with my work.

Man: I have not needed your company in the past, and I see no reason to need you in the future…

[Thinks] : Let me think about this for a while… There seem to be a few attitudes I could adopt:

- Ignore Death – Maybe he will go away?

- Death is not really what it seems to be – But what is it?

- Face the reality, and seek a way to escape. But where can I escape to?

Death: Let me show you your record in my database. Yes, I move with the times! The continual upgrading of technology costs me a pretty packet, I can tell you, but it is Worth it, to have all the facts at my finger tips. [Just a turn of phrase, as I don’t Have any fingers!]

Here we are: I can see we have had some close calls, but you always slipped from my Grasp. When you were young and started playing with electricity I thought I had you a few times. And when you got your driving licence I was filled with hope, but it was not to be. And when you tried your hand at rock climbing I had a few chances, but you were far too wary…

Man: It looks like I was careful, or just lucky. So there we are: I still have no need of you.

Death: Don’t be too quick to dismiss me. Over the last century I have been developing some backup plans. Call them insurance policies. In your case I got you out into the sunlight from an early age, and as a teenager I got you to spend many hours on your bicycle, out in the fresh air and sun. Sounds attractive, but the UV light is invisible, and its effects build up over time.

Another plan I had was to develop a high sense of responsibility, and hope that you Would become a workaholic – The idea being that you would eat badly, suffer from Stress, and neglect your health. And I would get you at last, in one way or another.

Man: So there it is at last: I have been looking for a scapegoat. You are the one I can blame for this melanoma. But we have caught it, and for the moment I am free of it. I am taking interferon treatment for a year, and I have made great strides in improving my general
health, and I’ll beat it yet!

Death: Don’t be too sure of that. I still have much power over this process. The melanoma insurance policy was a good one, and man and his technology can only go so far. I will meet many of you before five years are up.

Man: [Aside] This Death is sneaky. But I wonder if he is just trying to annoy me, or make me worry? I have been able to maintain a positive attitude, and I’m sure this has helped me in everything else I am doing to fight him. But if I let doubts enter my mind, my resolve may waiver.. But on the other hand, I know that the statistics show he is correct.

[Aloud] I have faith that I will beat you yet. All I need to do is carry on with the interferon treatment for a year, and then I should be free of it. I don’t mind putting my life on hold for a year… I can start making plans for what I will do next year. I have always been able to work on long-term plans, and this is no different… I just need to put up with the lousy side effects, and in no time it will be over, and I can carry on with my life.

Death: [Aside] Aha, he thinks he has it all worked out. But he is quite right: I am a sneaky bastard, all right, and I will not give all my secrets away.

[Aloud] Well, it looks like you are correct. Your surgeons have done a good job, and you appear to be free of further spread… so far. I have to give you credit for working so hard on your health as well. Your blood pressure is under control; No sign of Diabetes or heart disease. And losing that excess weight has reduced the risk of other diseases…

Man: [Aside] Aha! I’ve got him now – He agrees with me, so I must be doing something right. Let’s see if we can get rid of him.

[Aloud] Well sir, I think you have to agree with me – We have no business together today…?

Death: Much as I hate to admit it, you appear to be correct… for the present. I wish You a good day. I have much other urgent business, in Africa and the Middle East, so let me waste no more time on you.

Good day.

[Aside] It is as I thought: This man is putting up a good fight and appears to be Winning, for now. But there is one important point he has missed: Sooner or later, they all succumb to my scythe. There is no way out. The only questions are: When, and How?

[Exits]

Man: At last, I was worried that I would not be able to get rid of him. What a loser… Now I can carry on with my original plan. I will continue with the interferon treatment. It’s a nuisance, and has limited my movement, but will be worth the effort. Once this year is over I can get back to normal, put my life back into order, and start doing all the things I want to do. Must get out that list and add a few more things which have come to mind…

[Starts writing in a little red book.]

[Death appears again at the edge of the stage. The Man cannot see or hear him, but we, the audience, can see and hear him clearly.]

Death: Most men have a very simple view of my role: They live their simple lives, and When I finally take them way, they call it death. But I am more devious than that… That simple death is only the final stage – the last nail in the coffin, to repeat one of my favourite phrases!

Here is the secret: Life is to be lived, embraced, enjoyed, from start to finish. But very few men are able to do this, and that is where I start to profit, long before the end. When men stop living, or put their lives on hold, there am I, starting to take over, and from there it is steadily downhill, and I take them finally.

Some men live in the past, recounting past joys and triumphs, or bemoaning past accidents and wrong decisions. What a waste, reliving the past: But it limits their ability to see what could be, and I am there, standing just behind them, steadily taking away what little life they have left.

Others live in the future, slaving away now, in depressing cubicles, saving their money and time for some point in the future when they will be able to start really living. These are also some of my star performers. They are so busy saving for the future that they do not see me standing close. And I pick them off, one by one: Heart attacks; cancer; traffic accidents; Alzheimer’s – These are my tools in trade. Too late, too late, each one finds his life suddenly cut short, and all those plans go down the drain.

But the present is the only reality: Happiest is the man who is truly living in the Present. These are the men who give me the greatest difficulty, and I cannot do much about them, until our final meeting.

Friday, August 11, 2006

Week 19 – Do as I say, not as I do!

This has not been a good week. Last weekend I went shopping, and went out for lunch. Probably was not careful enough with my eating. I am making very slow progress on my project to repair my antenna, and it has been bugging me. So on Sunday I did a lot of sanding, and then painting… A couple of hours work. By the evening I didn’t feel so good, and hit the hay very early.

Monday I felt a bit down, but attended a business meeting, and then had lunch with a friend in Pretoria. It really hit home on Tuesday: Muscular aches and pains which didn’t go away. Wednesday was a holiday, and I got up late. Thursday I just didn’t feel good, so I took it easy, reading. Today was the first day I felt back to “normal”, whatever that might be, and I managed to get to the gym.

When will I learn? I know that I need to be careful about not doing too much. It seems OK at the time, but it catches up with me about 2-3 days later, and then takes a day or two to recover.

I had a set of bloods taken about three weeks back. The oncologist did not call me, so I suppose that was good news. But I was digging through my files, and found some previous path. reports, so I thought it may be interesting to compare ‘before’ and ‘during’ pictures. The figures show that all of my bloods have been well within the correct ranges for some years. However, now that I am on interferon there are some noticeable effects: Haemoglobin, Red cell count, White cell count, Neutrophils and Platelet counts have all dropped. Here are a couple of graphs to show the figures.

The Haemoglobin figure should be between 14 and 18, so mine is now a little on the low side.
White cell count should be between 4 and 10. Definitely lower than it should be...

I called the oncologist and discussed the latest figures. I wanted to know whether the drops were serious, and what I should do about it. Generally they are not worried, but agreed that I should improve the iron in my diet. Also, in view of the lowered white cell count, they suggest I should avoid concentrations of people, in order to avoid picking up infections and viruses!

I wonder why they didn’t talk to me until I asked?

Friday, August 04, 2006

Come to Sunny South Africa!

Springtime in South Africa

We don't usually have any snow to speak of!

I know those of you in the northern hemisphere are mostly sweating in the hot weather!

Perhaps George Bush is starting to get the message about global warming?

Thursday, August 03, 2006

Week 18 - Just had to share this...

Very short post this week… I just had to share this with everyone / show off!

As mentioned a while back, I have been working on my diet. I have had a few sessions with a dietician, and have been working hard at improving my diet. I figured that this was one way in which I can give the Interferon the best chance of doing its work. Being healthy cannot help but improve my situation.

I started with my eating plan around the first week of June. My objective was to reduce weight, and get rid of this spare tire around my middle. I have been tracking my weight on a daily basis, and as you can see from the graph, my weight is steadily going down.



One of the results is that my waist size has gone down by about 5 cm so far, and I can see the impact in my clothes. I have moved down a few notches on my belts, and I can see that I will have to alter some clothes when I reach my new target weight. I had some jeans in my cupboard which have been too tight for the last few years, and now they fit me comfortably!

I also notice that the side effects of the Interferon seem to have reduced. I’m not sure if this is because of the weight loss, and improved health, or just that my body is getting more used to the IF. I am sleeping better, and don’t feel nearly so foggy the day after each injection.

I am trying to keep up with regular exercise as well. This means getting to the gym 2-3 times week, and walking my dogs every afternoon. Still feel light-headed whenever I stand up quickly, but as soon as my heart rate picks up that goes away.

Lastly, my digestion has improved. I eat lots of vegetables and fruit, and eat fish or legumes for lunch every day. I suppose it is fortunate that I enjoy all these fruits, salads, etc.