Coffee Is For Drinking

One of the things seen often on the forums used by CLLers around the world, is a discussion on vitamins. Vitamin A, B, C, folic acid, ascorbic acid; if it has a name, you can be certain that somewhere a CLLer is taking it or investigating it, or knows somebody who’s uncles best mate’s third cousin has a friend who’s mum had her blindness cured by eating carrots.

I suppose that all this is understandable to a degree. After all, we have an incurable illness, and like other cancer victims, we have no real certainty about what our future may hold. Medicine offers us a great deal of hope, but no certainties, and many of us turn away from reality and invest their trust and hope in unproven remedies, quackery, lining the pockets of the unscrupulous in the process.

One of the most astonishing of the well known quack cures is the Gerson Method. Involving consuming up to 20lbs of juiced organic vegetables per day, plus three balanced vegetarian meals. Central to the method, is the coffee enema. This ‘essential’ component is part of the whole detox regime that the method is all about. It seems that this detox is supposed, by using all those organic, contamination free vitamin and enzyme rich veggy juices, to cleanse your cancer away.

Gerson web sites have some surprising things. Videos, containing the promise that they can cure your cancer, and nastily, warnings that chemotherapy and Gerson don’t mix. Something they don’t have is evidence of the wonderful cures that following the Gerson Method brings. They are in the UK too

I have just two more negative things to say about Gerson. Firstly, it is well known that detox diets only work for the shyster flogging the book, and there is no demonstrable detox effect at all.

There are some positive aspects to the Gerson Method though, and yes, you are reading this, this is real, nobody is twisting my arm up behind my back. I’m convinced that if you follow the diet, ditch all the junk, the pies, the burgers, the processed stodge, the fizzy pop, the alcohol, the additives and you drink the coffee, it would be a huge improvement on the average western diet.

Vitamins. That is where I started. It is well known that cancer patients take many more supplements than the average person. It is also well known that there is virtually no evidence that taking vitamins does you any good at all. This point was made in a very good article in the New York Times this week. (Via Badscience) Many vitamin supplements have been shown to increase cancer risk. When I see yet another CLL patient announce his/her regime of vitamins and supplements on a forum somewhere, I often want to scream at them to spend the money on fruit and veg instead.

The second negative thing about Gerson?

ASH Videos : Bendamustine

The American Society of Heamatology recently had their annual conference. The top experts present were interviewed on various topics, and here are four brief excerpts on Bendamustine.

The first is Keating, looking very relaxed.

Secondly, here is Kipps.

O’Brien, who looks a lot younger than I expected.

Lastly, the old man, Rai. Such a softly spoken man.

These comments were obviously recorded before “Treanda” recieved approval by the FDA very recently. The FDA gave its approval on the basis of recently published clinical trials, comparing Bendamustine with Chlorambucil. Rai seems to be the only one who acknowledges that this “New” drug is in fact decades old. You can read Chaya’s interpretation of the trial results here. I would have liked the unseen interviewer to ask the following question,

“Why do you think that the dosage parameters for the Chlorambucil arm of these trials were far lower than accepted dosage levels for firstline treatment?”

(Chaya notes that - in both clinical trials they managed to test against a less than effective dosage of chlorambucil.)

It is also interesting to note that a few weeks ago, Treanda was approved by the FDA. Cephalon (who sell Treanda in the US) shares soared, and four senior directors of the company made a fortune selling some of their stock.

Big Pharma. Sheesh.

Preventing Colds And Flu (Some Readers Digest Tips)

Not that I read the Readers Digest except when in doctors waiting rooms, but I was reading this article in, well, the Readers Digest today, and I thought it was worth sharing with CLLers. It consists of 23 tips to help prevent colds and flu, and they all seem pretty sensible, without much woo content, and they can’t do us any harm. Fact is, it seems like a good idea to read through this lot, and see how your own behaviour can be modified to fit.

I particularly likes the toothbrush tip, reproduced here -

Run your toothbrush through the microwave on high for 10 seconds to kill germs that can cause colds and other illnesses. You think it gets your teeth clean — and it does. But once you’re done brushing, your toothbrush is a breeding ground for germs. Sterilize it in the microwave before you use it…………

You may think I’m being a bit paranoid, but any CLLer could be considered to be immune compromised, and it would be silly to be complacent. I would add that this sort of thing has not taken over my life, but I wash my hands a little more often than I used to. I do take more care brushing my teeth, I get a flu shot, and try to get some herd immunity too by getting the family immunised too. As a CLLer in the UK, our immediate families also qualify for a flu shot, no matter their age.

Be careful if you have an electric toothbrush however, and just microwave the toothbrush bit, and not the electrics. You’d think that would be obvious wouldn’t you. I bet the Readers Digest get complaints from the intellectually challenged.

New Page Added

Instead of a separate blog post dedicated to the index of posts by Prof Hamblin on CLL, on his blog Mutations of Mortality, I have now given over a whole page to the Professor. You can find it by clicking on “Hamblin On CLL” in the navigation area at the top of this page, just underneath the words “A Lymphomaniac Blogs.”

I have added three more posts to this list today, written by the Prof earlier this month.

Other recent changes include the addition of a miniblog on the right of the page, which is just a series of links to sites that interest me.  I hope they interest you as well.  As I add sites to the list, old ones will fall off the bottom, so there will always be something new to see.

Would You Believe It?

One of the oddest things to come to my attention in the last few days is the case of the American Professor who is claiming half a million dollars for what we would probably call “wrongful dismissal.”

“The zebrafish specialist said his civil rights were violated when he was dismissed shortly after telling his superior he did not accept evolution because he believed the Bible presented a true account of human creation.” Reuters

To me, it is a little silly to be a biologist and a creationist at the same time. They are mutually incompatible. It would be like applying for, and getting, a job as a bus driver, only to tell the boss when he hands you the keys that you cannot drive. Don’t just take my word for it though, how about a fully paid up molecular biologist who happens to be very Christian. (Does that mean he’s a Christian Scientist?)

“So in light of the issue’s new prominence and with a desire to improve the mental hygiene of others, I would just like to say that Intelligent Design is a really, really bad idea –scientifically, politically, and theologically. I say this as a dedicated conservative, who has on many occasions defended and espoused religion and religious conservatism. I also say it as a professional molecular biologist, who has worked daily (or at least week-daily) for years with biological problems to which the theory of evolution has contributed significant understanding — and to which Intelligent Design is incapable of contributing any understanding at all. ” Mac Johnson

So there you have it. A fishy biologist who thinks evolution isn’t.

I hope you are asking about now why I’ve categorised this as a CLL post, as well as a Badscience one. Here is the reason. Our Creationist Professor had the following as the title of his PhD thesis -

“Abraham, Nathaniel. Role of Programmed Cell Death in Defining Zebrafish Development. Thesis (Ph. D.)–St. John’s University, 2004″

The words Programmed Cell Death are the key; that is apoptosis by any other name, and all CLLers know that the understanding of the failure of apoptosis in our b-cells is one of the keys to a possible cure.

As I already said, I don’t think he is entitled to his half million.

Dr. Strangelove Bites Back

Further to my recent comments about my last appointment with Dr. Strangelove, I have received my copy of the normal follow up letter that he sends to my GP.

In it, he outlined what I already outlined earlier, gave a brief run down of the blood results, and some other comment.

It is signed, as normal, with an addendum that reads -

AKA “Strangelove”

Four Months Post Chemo

I went to see Dr. Strangelove today at the Castle Nosferatu local hospital out patients clinic.

He took one of those long wistful looks at the latest (more or less normal) blood test results. We decided that I don’t have to see him again for another six months, as I have no bothersome b-symptoms left either. And that’s it. I’m in control, as if I do notice anything creeping up on me, I have to contact him for an earlier meeting.

This is particularly good news, and it means that I have to try to get into the feel of being more or less normal. Any symptoms I feel at the moment are probably due to mind altering drugs/alcohol/indigestion/old age.

Forums For Good, Forums For Bad

In the Times on Monday this week there was a piece about online health forums, and how they provide such a useful resource so many people who may otherwise go uninformed about their condition. CLLers are very well served in this respect, having one of the oldest forums of this type in the world.

The ACOR CLL list was established in 1996 and currently has 2,606 subscribers from around the world. As always there has to be a British version, but ours has 100 subscribers, and is rarely used, and the Canadians have 180 members. There is a Yahoo CLL/SLL group, and a Facebook group and there are world class experts participating. The Lymphoma and Leukaemia society in the US has a forum, There is the CLL Forum and CLLCfriends forum. (all effectively US based)

In the UK, Leukaemia Care has a forum, with very strange rules, and there is the UK CLL Forum, which the UK CLL Support Association has abandoned. If you have a UK specific question, it might be worth asking there, as the two guys running that forum (somebody called Andysnat, and Robert) think that it is very worthwhile maintaining it.

You may be thinking, if you are a CLLer, “Yes, but we already know most of this Andy, except that bit about the two guys.” On the other hand, perhaps somebody new to CLL might stumble over here, and then I’d have done a little good by pointing them in the right direction. I’d like to do something else good in the process as well, and reinforce a little warning that appeared in the Times article.

It said “Check any medical advice that you receive from a forum with your doctor.”

I’d add to that along the lines of -

“Don’t squirt coffee up your bottom”

and

“A balanced diet is probably better than popping vitamin pills”

and

“If Mangosteen or Acai juice cured CLL I wouldn’t have just finished four months of Chemotherapy”

A friend of mine sent a message to me that more or less summed it up. In it he said the following -

” What’s wrong is that well-meaning people can encourage people to do the wrong things and discourage them from doing the right ones.”

And that is EXACTLY how I feel, but have never defined it that precisely.

In Australia at the moment, there is an investigation going on into the terrible death of a nine month old child, whose father is a homeopath. I don’t find it important to dwell on the circumstances, but to illustrate the worst kind of thinking that you might expect to find in a forum, here are some homeopaths speculating on the child’s death. (Via Badscience)

Professor Hamblin On CLL

Updated 15/12/07

If you have CLL and you are reading this, you have heard of Terry Hamblin. He is one of the world’s experts on the subject of Chronic Lymphocytic Leukaemia. Now retired, he doesn’t seem to have stopped working. On his blog, Mutations Of Mortality he states the following - “Professor of Immunohaematology Southampton 1986 to present. I now work part time researching, writing, reviewing, editing, speaking, sitting on committees, advising, answering questions and thinking.” His blog must take up some considerable time as well. There are ninety eight posts on the subject of CLL, and if you want to read them, you have to read the whole blog, as there is no index at present. Until now. The rest of this post links to all the CLL related posts on Mutations of Mortality.

If you are new to CLL, then read the following three posts, “What is the aim of treatment” Part 1 - Part 2 - Part 3. At the same time read “Who Needs Treatment?” - this will give you a balanced start in the process of learning about CLL. I think you should also read “Alternative Medicine” too, also as part of a sensible introduction to the illness.

Treatment Ends

When my first cycle of Chemo began in May 2007, I was expecting a total of six rounds, and that today - 29th August 2007 - would be day one of round five.

Yesterday I attended Dr. Strangelove’s Tuesday outpatients clinic at the castle nosferatu local hospital. I expected him to discuss the latest results, and suggest a cat scan, in order to assess the progress of my treatment to date. I fully expected to be taking home a large bag of drugs from the nosferatu Chemotherapy Day Unit, with the usual admonishments to stay out of the sun, eat no garlic, get in touch straight away at the slightest sign of a fever or any symptoms of a cold, shivers etc.

I was not looking forward to the next five days. Last month, my fourth round, I had felt miserable during that time. During my consultation Strangelove confirmed my feeling that the discomforts of treatment are cumulative, and I was not imagining that each round was worse than the last. I had spent half that week lying down, as previously described.

Looking at the blood tests however, Strangelove agreed with me that the counts were all in the “normal” range, and he didn’t want to make me do two more rounds of chemo, as there was no need. I had to double check that I had understood the implications of all this, but I was right, I had understood, and I think that if my smile had been any wider, the top of my head would have fallen off. He said that the synergy of the two chemo drugs, Fludarabine and Cyclophosphamide, had given him good results in the past, and I had been particularly sensitive, and hence successful.

My next scheduled appointment with Strangelove is at the end of November, and I am delighted with this news.

There was no mention of the word remission in our discussion, nor had I expected it. In the CLL community, there is some debate as to whether the word should be used at all in connection with our illness. I am a realist, and at some stage, I expect to be back in treatment again, but I am optimistic that it will not be for a decent length of time. I will get a little hint in November when I get the results of my next blood tests.

I skipped away from the consultation to make my next appointment at reception.

“No more bloody chemo for me!” I announced, smiling at the ladies and a couple of people waiting at reception.

The reaction from everybody within earshot was heart-warming. Genuine broad grins and congratulations as they shared my pleasure.

If you happen to be in Sedgefield in the next few days, and see a manically grinning grey-bearded bloke, you will probably understand why.