men need enlightening, not frightening
21, 2012 |
White and his PSA level
month I was sent an update by Roy White.
He was diagnosed in 2008 with a PSA of 7,000 ng/ml PSA - yes, seven thousand
- with a Gleason Score of 10 and a T4 staging. A diagnosis that would have most
people predicting a survival that might be measured in weeks or months rather
than years. He commented that his PSA was now 240 ng/ml but he was feeling OK.
comment just made me reflect again on how men react in so many ways to such a
wide variety of PSA levels. While Roy was OK with his 240 PSA and I was not unhappy
with my PSA of 6.4 because it was down from 15, there were men concerned about
a PSA of 4.2 because it had 'gone up' from 3.9, other men considering salvage
therapy in the light of a perceived increase in the third figure of an ultrasensitve
PSA to three decimal places.
I realise that there are differing levels
of PSA which might be considered appropriate in differing circumstances. The man
who has had surgery will have different concern levels from the man who has had
radiation or the man on hormone therapy. But.....how often are PSA movements predictive
of a fatal outcome, even in the long run?
are many queries and discussion in forums on the Internet about the efficacy of
various supplements, herbs etc. People sometimes mail me directly to ask my opinion
on a specific supplement. Since I have no training or expertise in this, my general
response is along the lines of:
1. Is there any independent evidence
to support the claims being made?
2. Will the person providing the information
benefit directly or indirectly from what they are claiming?
3. How long
is it since the evidence supporting the claim was collected or completed?
these questions should highlight issues to be considered before spending hard
earned money on something that may be of doubtful value.
one of my posts along those lines, someone mailed me to say I should check out
Zyflamend at Center
for Holistic Urology - ".....because it appears to work...".
I read through what the statement on the site (shown below in italics).
I have recorded my thoughts and actions and conclusion at some length because
I think it may help others evaluate similar claims for similar supplements :
is an amalgam comprised of 10 different herbal extracts (rosemary, turmeric, ginger,
holy basil, green tea, hu zhang, Chinese goldthread, barberry, oregano, and Scutellaria
baicalensis) and was originally chosen based upon their purported anti-inflammatory
Why such an amalgam of "rare" ingredients? If they
ALL have purported anti-inflammatory effects why mix so many together? Surely
one - say something simple and cheap like rosemary or turmeric or ginger - would
do the trick? I thought I recogised Scutellaria baicalensis as Chinese
Skullcap and seemed to recall some negative information about that? So I went
to the excellent Memorial
Sloan-Kettering Cancer Center site . That showed these potential side effects:
fever, drowsiness or lung inflammation. Respiratory inflammation may result in
breathing problems such as wheezing, shortness of breath or chest pain. Long-term
treatment with Scutellaria baicalensis may also damage your liver, which may lead
to jaundice, abdominal pain, intense skin itching or unusual fatigue. There is
also an interesting Warning "Products containing S. baicalensis were found
to be contaminated with a similar-looking plant known as germander (Teucrium
chamaedrys) that can cause hepatitis. (I haven't looked up all the other ingredients,
exotic or otherwise, of Zyflamend but the MSK site is a good one for that kind
Recent observations from a variety of both basic and
clinical researchers suggest that inflammation and cancer may be
"Suggests" and "may"
are sandy foundations upon which to build a mighty structure that will fight cancer.
But in effect what this is doing is setting up the straw man. By possibly showing
that Zyflamend may reduce inflammation, it is pssible to claim that it
is fighting cancer, or reducing the risk of cancer.. But there are no studies
that show inflammation as being a cause of cancer. There may well be a correlation
between inflammation and cancer, but there is probably a correlation between drinking
orange juic and cancer.
Our studies have demonstrated that this preparation
does, indeed, inhibit major enzymes involved in initiating an inflammatory response
(COX-1 and COX-2). We have also shown that Zyflamend inhibits prostate tumor cell
growth and induces cell death by a process known as apoptosis.
read how the studies were been done because my eyes have a limited "Use By"date,
but I'll bet London to a brick that they are petri dish studies or murine studies
or studies with some odd proxies. The 'proxies' here are likely to be COX-1 and
COX-2 which may initiate an inflamatory response, which may be associated
with cancer. So if we can stop the twin COX brothers starting inflammation we
may be able to stop cancer developing, provide, of course, that inflammation does
cause cancer. As someone said "It's good to know that we can cure cancer
in mice in so many ways - pity none of them work in humans."
understand the mechanisms through which Zyflamend is acting to suppress prostate
cancer cells, we have continued our studies and have identified several key molecules
in which Zyflamend appears to be acting upon.
seems to be less confident than "successful" I'd like to see
the definition of "successful" - it may be like the definition of "sex"
as in "I did not have sex with that woman".
We have published
our initial studies in an esteemed, peer reviewed journal, Nutrition and Cancer
(Lawrence Erlbaum Associates, Mahwah, NJ) and we are currently preparing to present
our latest results at the Society for Integrative Oncology's annual meeting, November
That's more than five years ago. Is there anything
more definitive since then?
I'm not saying that Zyflamend does not fight
cancer, because I simply don't know, but.......rightly or wrongly, I wouldn't
spend a cent on it myself. The MSK site also has this to say about Zyflamend.
"The FDA issued a letter (in January 2005) to an Internet distributor
for exaggerated claims made for Zyflamend . Individuals using Zyflamend should
be cautious of such claims."
Internet is for people with too much time on their hands......
came across a mail to my Australian doctor written soon after I was diagnosed
in 1996 when I was living in Cape Town. In it I said, amongst other things:
still haven't got onto the Internet as I am still not convinced that it is a great
idea for me at the moment - I saw a quote recently to the effect that the Internet
is for people with too much time and too little imagination! "
I was clearly wrong about that! Many of you responded last year to a request to
complete a survey for a thesis on the value of sites like these on the Internet.
I have now received a summary of the results and this can be read here - Results of the Online
Survey There are no real surprises there, but it is nice to know that the
results indicate that
".....PCa online support groups can significantly
contribute the empowerment of those patients and their relatives who choose to
participate in the online support groups."
The young lady who
ran the survey mentioned to me that as part of her analysis she also looked at
the response of people who are termed 'lurkers'. I don't like that expression
but it is commonly used to describe the majority of people who will read and gather
information from Internet sites, but do not ask questions or contribute. They
too get value from being members of the Internet users:
are equally satisfied with the groups and benefit from being a part of the online
group - in many areas to the same extent as the posters... I think it is particularly
important that people can reappraise their situation, ease their anxiety, feel
more in control and feel more positive about themselves just from reading messages.
have been approached to ask you to complete another survey - it took me less than
20 minutes. If you go to DIVAS Survey
you will provide a little more insight into the importance of Internet support.
has been a substantial improvement in manners on the Internet over the past few
years on sites like the YANA Forum and other Mailing Lists (although not so much on some
of the 'social networks' like FaceBook perhaps?)
Against this background
I was saddened to receive an e-mail from one of the Yana men asking to be removed
because of the disturbing mail he had received because of his ethnicity.
really is inconceivable to me that anyone could attack another man who shares
this disease. Maybe it was unintentional; maybe it was ignorance but please be
aware of others' sensitivities at all times.
on Zytiga and Yana-3
mentioned in the December E-Letter #5 that
it was important to take Abiraterone acetate/Zytiga with a meal. It is far from
clear why this drug is not taken in a lower dose on an empty stomach. See this
additional information Doctor Potter's Comments
- 3 Update. Mark ran into some obstacles with my service provider who was
not particularly helpful. This will probably mean in the long run that we will
move the site to a new provider, but it is not appropriate to do that right now.
The delay caused by this has impacted the project because I will be away for most
of the month of March. Hopefully all will be ready to roll in April. We may need
some volunteers to do 'cutting and pasting' of the existing stories. It will not
require much skill beyond the ability to perform these simple functions and if
you feel you'll be able to help, please mail us .