men need enlightening, not frightening ||October
are we doing?
Laszlo mailed me this month to say that he had finally written the book about
his diagnosis and treatment. He says he wrote this with complete honesty, no matter
how humiliating or self-incriminating and goes on to say It is rated between
R and X. It had to be dirty. Prostate cancer is a dirty disease. You will learn
a lot. But you will laugh a lot more. Details are on the site at Prostate Cancer is (not) Funny
I asked Dan to send me a copy of his book to review, he mailed me back asking
how many visitors there were to the Yana site (which I thought was a bit cheeky
since he was asking for publicity.) This led me to have a look at the latest data,
which I tend to overlook because, after all the site is not a commercial one and
I know that it attracts a fair few hits.
But what I found was quite a surprise.
In January last year there were 10, 127 unique visits (this term excludes returning
visitors). By December this number had grown by almost 20% to 12,138. I don't
have the final figures for this month, but with two days to go, the number of
unique visitors is 15,948 and the projection for the month is 17,624 a 45% increase
in only 10 months. On three days this month there were more than 1,000 unique
visitors, quite a jump from the average of 602 in January last year. There were
141,000 unique visitors last year accessing 720,108 pages on the site.
we are reaching an audience. It seems clear from these figures are linked to the
work done by Mark Freedkin and the team of volunteers
which makes navigation around the site and the posting of stories and updates
so much easier. I know too that the referrals from all of you folk and others
who have visited the site are having a snowball effect. That is great, but with
200,000 men diagnosed annually in the US alone, I’d like to get even more visitors.
have tried to get the large prostate cancer organisations to give us a bit of
publicity and link the site, but apart from PAACT
Patient Advocates for Advanced Cancer Treatments who serialised my booklet
A Strange Place, I have had very little response. Dr Gerry Chodak has also offered to help
and he is trying to edit a Skype interview we had into a You Tube clip.
please keep up the good work of telling people about the site and if any of you
have contacts or can suggest ways of spreading the word, please mail me.
to think while on ADT (Androgen Deprivation Therapy) - Hormone Therapy
of the consequences of ADT (Androgen Deprivation Therapy) that is often discussed
is an inability to think as clearly as one could before commencing the therapy.
There is much literature on the subject and many men have referred to the problem
A small pilot study published last month - Cognitive problems in patients on androgen deprivation
Eight of the 11 participants reported impairments
in the domains of concentration, information processing, verbal fluency, visual
information processing/visuospatial function, memory, and executive dysfunction.
Neurobehavioral problems, including neurofatigue and apathy were also reported.
study is analysed by Mike Scott with his usual competence on The "New" Prostate
Cancer Infolink at ADT and cognitive function — a review and pilot
study), which is worth reading if this issue concerns you. The comments
to the summary may also be of interest.
As Mike says, this subject has
been raised many times over the years and in fact I found a post to a Forum which
I wrote in June 2004 (can that really be 8 years ago??). I had not started on
ADT at that time and this is what I said:
I wonder if any of the declines
that have been discussed …. might have as much to do with ageing as with treatment.
I know that most people feel that like Peter Pan, they will never grow old, but
the reality is that we do, and as we do, we start losing our abilities, both physical
and mental to perform at the level we did when younger. I haven't had any hormonal
treatment, but I certainly can measure the change in my functional level over
the past 10 years or so - I put it down to living by the sea and having semi-retired,
but in reality, even I am ageing. I had to go to the physio last week after damaging
a ligament in my knee on the mountain. After examining my knee carefully and some
manipulation, he said there was nothing intrinsically wrong with it, except that
it was not so young any more!
I started on ADT three years later and,
despite what may be considered the bravado in my post I too was concerned about
mental issues - perhaps depression more than anything else. I can't say tht I
have noticed any specific deterioration in any mental function which I can sheet
home to ADT (Androgen Deprivation Therapy) My mental function is not what it was,
but then the same thing applies to all my old family and friends. We all forget
words, names, what we were going to say! Perhaps I am just lucky, because I know
that many men do report sever problems.
Just in passing, it was of interest
to note Mike saying "... many men may actually be on continuous ADT for
5, 10, or even 20 years today." because there is a "belief"
among many men that ADT inevitably fails after two or three years, with death
following shortly after that failure. It ain't so.
Choline PET scans
to Allen Z for an interesting link to a talk
by Dr Eugene Kwon of the Mayo Clinic on the value of the C11 Choline PET scan
at the PCRI annual meeting in September last year.
the points made by Dr Kwon is that, based on his work with these scans, he believes
that metastasised disease is not always systemic (see the piece I wrote
about the various terms used for the disease beyond the gland in E-Letter
9: June 2012). This is clearly a very important issue because it may indeed
be possible to target focal metastases with therapies that are less damaging to
other area of the body.
There is a link to an Italian study which seems
less convincing that Dr Kwon's lecture, but it should be borne in mind that this
might not be a comparison of apples and apples. The Italian study refers to Choline
PET scans, not Choline C11 PET scans, which seem to use different material. The
C11 Choline PET scan was approved by the FDA last month and there is a commentary
on this in THE "NEW" PROSTATE CANCER INFOLINK
have been a number of discussions on Internet Forums on the subject of PET scans
which seem to hold a good deal of promise. A search of the PPML - Prostate Problems Mailing List - Archives
should reveal some of these.
passed on in early October.
He was a real character and will be missed by all his Internet friends. His story
is an amazing one and has featured in this colum previously because his PSA was
2,100 ng/ml when he was diagnosed with a Gleason Score of 9 and stage T4. That
was in January 2003 - almost ten years ago. It is not clear whether it was his
heart (he needed a transplant) or his cancer that got him in the endDavid Emerson
was another man with
an amazing story. He was only 42 when he was diagnosed - quite a deal younger
than Alan who was 52. David's initial PSA was 271 ng/ml, his Gleason Score was
8, and he was staged T4 in 2005. He fought the disease with every weapon he could
lay his hands on and kept a blog that recorded his journey in detail. He called
it The Big "C"
and Mary, his wife, completed
the last entry on October 6, 2012
We were also told this month that Roger Jaeger
had sadly passed away
in July - apparently from a heart condition.
has always been a concern to me that although thousands of people have visited
the Yana site, there are many more thousands who cannot get hold of the kind of
information that is on the site which many people have said they found to be helpful.
years ago I wrote and printed an information booklet with the intention of distrib-
uting these to people who did not have Internet access. I have distributed 801
copies, peaking at 234 in 2010.
The numbers of requests have fallen with
only 66 being requested in the year to date - the latest request being from a
man in Puerto Rico, a first for me.
The booklet can be down- loaded here
A Strange Place
and it may be that
the numbers have dropped off because many copies are being downloaded. But if
you know of anyone who is not computer/ Internet savvy who might find the booklet
useful, please mail me their name and a snail mail address. There is no charge
and delivery usually takes about ten days to the US - it's a bit quicker to UK
and South Africa.