men need enlightening, not frightening
18 , 2012 |
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
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.
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.
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
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.
using herbal supplements with conventional medication.
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:
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.
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).
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.
to compare Proton and Photo Radiation head to head?
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.
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.
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
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.
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
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.
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!!
benefits for Zytiga?
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.
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.