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Prostate men need enlightening, not frightening


May 18 , 2012
Update on YANA-3


I had intended to try to send out an E-Letter once a month covering items that might be of general interest, but the last couple of months have made this a little difficult.

The first distraction was the project we called Yana-3 aimed at making the posting and updating of survivors experiences easier. Turned out to be a bit more complex to transfer the 1,000 plus stories from the old data base to the new one than we had thought it would be. Although there was a heart warming response to my call for volunteers to cut and paste the material, it became clear as we started the exercise that it would be very difficult to develop a standard set of rules to cater for all the issues that had to be dealt with. So Mark Freedkin, Gary Peterson and I set out to do the work ourselves and to finish it before the end of February. The hours that Mark and Gary put in were amazing.

This date was important because I was heading to South Africa to celebrate my big 70 birthday (and fifteen years post prostate cancer diagnosis survival) with friends and family. We didn't quite make the deadline, but Mark and Gary finished off the work while I was away.

When I got back at the end of March we tidied up some of the loose ends and started sending out reminders to Yana men who had not updated their stories for more than a year. It is clear from a poll that I ran on site that the most important issue for the majority of men who visit the site is the long term outcomes of the various treatments and they can only learn what those are if the men who tell their stories are good enough to send in an annual update. The initial responses to the reminders have been excellent with more than 300 updates coming in during the month of April. If you haven't sent in an update recently please go along to UPDATE YOUR STORY and get your latest news in.

The new setup means that the full data base can now be searched and assembled by a number of criteria, making it possible to match diagnoses or therapies much easier than in the past. Mark in particular has done some marvellous work and has put in hundreds of hours and we should all be grateful. The stories are indexed at SURVIVOR STORIES.

No sooner had I got on top of that and started discussions with Mark and Gary as to how best to proceed than I had a fall - just stepped carelessly off the sidewalk - and managed to break my arm and a couple of bones in my wrist. Nothing too serious, but it has slowed me down considerably. Pecking out e-mails and Forum responses with one finger on my left hand took a long time. But I'm healing well and can work for short bursts with my right hand, thank goodness. Should be fully functional within the next two weeks.

Beware using herbal supplements with conventional medication.


I mentioned above that I had a fall and broke my arm. Always looking for the positive, it seems clear that there has been no significant deterioration in my bones, despite the ADT (Androgen Deprivation Therapy) I have been on for some years now. No shattering of brittle bones, just a small break in an awkward spot. My PSA has not changed significantly since February, so I get my next Zoladex shot at the end of this month and my next PSA in July.

An interesting side issue was the use of herbal supplements. My sister and sister-in-law, who live in South Africa, are both great believers in these and both suggested I take Arnica and Comfrey (aka BoneKnit) to help in my healing. Despite my underlying views on the unproved value of such supplements, I took the Arnica for a couple of days from a supply Anthea had bought for her own use, believing that there would be no harm in doing so. Surprisingly (and perhaps coincidentally) my arm started feeling a deal better after a couple of days. But we couldn't buy the comfrey - it is banned in Australia. I went to the Memorial Sloan-Kettering site that is so useful to find out about supplements and and herbal prodcuts and found:

1. That in June 2001, the FDA asked all manufacturers to remove products containing comfrey from the market because many cases of liver toxicity have been reported with use of comfrey. One of the substances in comfrey also causes cells to increase the rate at which they divide. It is this that is thought to help the healing process. But, I felt, it was not the sort of encouragement to give to cancer cells.

2. On the basis of this information, I thought it might be an idea to look up Arnica and found this warning

Do Not Take If You are taking Warfarin or other blood thinners (Arnica may increase their effects).

Since I am on Warfarin, for my heart condition I stopped taking the Arnica immediately. Better to take a bit longer to heal than to have a stroke!

This is, I think, a good example of why we should all be very cautious about adding herbal suplements to standard conventional medications.

Study to compare Proton and Photo Radiation head to head?


It seems from an announcement in the Boston Globe that there are plans afoot to finally set up a study that will compare the efficacy of Proton Beam Therapy with Photon Beam Therapy. Hopefully this will provide enough information for men who choose radiation therapy to make up their minds which is a better choice. But it will be many years before it is completed - or even commences.

Discussion on this announcement led veteran prostate cancer survivor Jack Jennings to post his views. I "met" Jack on an Internet Forum many years ago and although he and I chose differing paths, he impressed me with the vigour with which he investigated his options. This edited version of his posting, published with his consent may be of some help to anyone still waiting to make a decision on treatment or salvage therapy.

Over the years I have decided that all studies comparing various treatments for prostate cancer end up a garbage research for one simple reason.... they assume that the type of treatment is more important than who is doing the treatment. I have encountered many examples that have solidified this so permanently in my consciousness that I almost consider it to be my first principle of prostate cancer treatment.... who does the treatment is as important or is more important than the type of treatment.

Here is an example of what I mean. Dr. Zelefsky of Sloan Kettering has been a leading researcher in photon beam radiation and published the earliest 5 year study I know of showing the superiority of IMRT (Intensity Modulated Radiation Therapy) over conventional beam radiation and his results were fairly good. Several years after this study was published a patient decided to be treated by a pair of radiation oncologists in a hospital in New Brunswick, New Jersey using the same equipment as Dr. Zelefsky. These doctors were so incompetent that they burned a hole through both the bowel and bladder of this poor guy so he was urinating from his anus. Same type of treatment but with different results, just a few exits down the New Jersey Turnpike.

A second thing I've learned is that 5 year studies of prostate cancer treatments are not very informative for several reasons, the most important being the long time it takes prostate cancer to recur. So you should look for longer periods and big numbers of men in the studies.

Dr. Rossi and his crew at Loma Linda published their 10 year results in 2004 (International J. of Radiation Oncology Biol. Phys. Vol. 59 . No. 2. pp 348-352, 2004). The study had 1255 patients in its cohort (spread across all diagnostic stages, PSAs and Gleason scores and initially looked good. But their "cure" stats were computed using the now discredited "ASTRO" definition of freedom from disease. If I remember correctly, Dr. Rossi later released another set of stats computed using maintenance of a low PSA after nadir which were not nearly as good.

If you compare these stats to those in really large study cohorts, like the continuing (I believe) RP (Radical Prostatectomy) stats at Johns Hopkins, or the combined seed and external beam stats of Radiotherapy Clinics Of Georgia, both of which follow thousands of patients, the odds of estimating what the outcome is likely to be become more accurate.

When I was diagnosed in 1997 RCOG gave me an 87% chance of being cured with my PSA 5.6 and Gleason Score of 7 (3+4). The additional data and what they have learned since then means that a man starting treatment there today has a 92% chance of cure. Now this still means that 8% experience recurrence, and if you fall in that 8% it's very disheartening. However, choosing treatment where you have the best odds is still your best bet.

If you really want to find the best and/or most cost effective treatment you must really compare doctors/facilities - not treatment types. Unfortunately it is not always easy to do this. I understand that most of the outfits now doing Proton beam radiation have been trained by the Loma Linda crew so their results might be more consistent than other types of treatment, but I would still be suspect.

Many men investigate their options thoroughly before making a treatment choice. I think that Jack Jennings, Fuller Jones and Jon Nowlin have all written good accounts as to how they went about making their choices, different as they are.

Two Tough Men

Many people have read with amazement the incredible journey to date of Roy White since his diagnosis in Juy 2008 with a PSA of 7,000 ng/ml and a Gleason Score of 10.

There is another similarly amazing story. Alan Charlton who was diagnosed in 2003 with a PSA of 2,100 ng/ml and a Gleason Score of 9. He sent his update in earlier this month. He's still with us and says he feels pretty good at the moment, although he has been told he should have a heart transplant!!

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More benefits for Zytiga?

No doubt many of you will have read about the Abiraterone study, the FDA approval of the drug and the marketing of the drug as Zytiga by Johnson and Johnson.

The original trials and studies recruited men who had failed ADT (Androgen Deprivation Therapy) and chemotherapy. The result of those trials have led to a further, very small, preliminary study on the effect of the drug on men before chemotherapy is started. The results are to be presented at next month's annual meeting of the American Society of Clinical Oncology (ASCO) in Chicago and are sure to attract a deal of attention.

There have been several media pieces, some of which promise a cure for PCa in their headlines. This piece Advanced Prostate Cancer Drug May Help at Earlier Stage is more balanced. But it is as well to note the caution in the piece .....the findings were still preliminary and need further investigation.