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| Vol. 4, No.
2 |
February 2005 |
FEATURE
ARTICLES
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Some small changes in our approach
As you know, we have been going over our
approach to the regular meetings. We polled the members and cut the
mailing list from around 130 to 87, and we polled our speakers.
The results of these polls have been given in past newsletters.
We have also become aware that the increased use of PSA has led to
an increase in prostate cancer cures. There has been a
quandary here since the death rates have not dropped. Part of
the reason may be the higher incidence among African-Americans and
Hispanics and the large increase in the Hispanic population.
On the down side, we have been too negative in
our approach and need to be more upbeat. For example 95% of
newly diagnosed will live for five years, and though 10-year survival
rate is 66%, we expect new therapies to radically
improve this percentage over the next five years.
Finally we board members will take a less
visible role and the physician speakers will have the
major role in our meetings. Henri is taking a sabbatical, Tom
will not attend as often and will be more upbeat, and while I will
greet you and open and close the meetings, I will be gone during the
talk so as not to take away from our speaker. We will see if
these changes help attract more to the meetings, otherwise we will
concentrate on one-on-one counseling and forgo meetings.
Our web page shows only 14 hits since January
21,
possibly because only 1/3 of persons over 65 use the internet.
We will re-examine this issue since there are now so many websites
available for PC information.
See you at the next meeting -
Jerry Bylander
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"Newly Diagnosed Prostate Cancer"
Date: Tuesday Evening, March
15
Time: 6:30 pm - Social & Coffee
7:00 pm - Program
Location: Senior Center, Wilson N. Jones North Campus,
South Entrance, 3305 Calais Drive, Sherman, Texas
Speaker:
Dr. Steven Johnson, Board Certified Urologist; Past President, Texas
Urology Society; Texoma Urology Associates with offices in Sherman and
Denison
Program: Dr. Johnson will discuss PSA
elevation, DRE, and your biopsy's Gleason score and how your doctor
will make determinations and recommendations for therapy from these simple
factors.
Format:
We are planning a new format
and also the roles of our Board will change. Tom may come
occasionally, but will be available for one-on-one support. Jerry
will welcome our guests, introduce the speakers, then leave but return
later to dismiss the group at 8p.m. He also will do counseling,
mailings, the web page and newsletter and newspaper announcements.
Henry will restrict his activities to one-on-one counseling, writing for
the newsletter to help us keep up with the latest developments,
continue his contacts with other doctors to help us stay current and work
to help those with no insurance with their treatment and drugs.
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| Date & Time: |
Tuesday Evening, January 18,
2005, 7:00 PM |
| Place: |
Wilson N. Jones, North
Campus |
| Attendance: |
approximately 10
attendees |
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Topic: "Roundtable
Discussion: Life is good; Here are some tips to make it
better"
Panel Members: Jerry Bylander, Tom Nuckols,
Henri Plunkett, other
members
Program: The first half of
the discussion was well-received. The last twenty
minutes initially became rancorous after one member raised a question
about high medical costs which led to a discussion of our dysfunctional medical system. Shortly thereafter, a latecomer became agitated and
started complaining about the failings of the leaders of the group
meetings. The discussion leader, Jerry, then raised the question as to whether
we should dissolve the group. It had earlier been pointed out that
our group had seemed to have lost the support of the medical community.
However almost all the attendees were opposed to stopping our informative
meetings.
The meeting adjourned about
8:15 PM.
Jerry Bylander |
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Cancer Cure Coalition Conference: What Can Be Done When Cancer Recurs? Treatment
Options
February 12, 2005, West Palm Beach, Florida.
Two of our directors, Jerry and Tom, attended
the conference. The meeting in West Palm Beach was very helpful.
First, it appears that everything Henri has been insisting on with the doctors
here at our meetings was perhaps a little understated--surprise. One
doctor on the panel* said that it was malpractice if a doctor gave Lupron and
didn't require calcium supplements also. The reason: osteoporosis
results and when a hip joint fails that is a death sentence! Also bone
strengthening exercises are a must.
* Saturday we had individual talks followed by a
panel discussion.
As to diet, everything Henri tells us was seconded
by the panel: low fat heart diet with soy plus vitamins D and E plus
selenium and tomato paste.
As to chemotherapy, Dr. Barker's findings at
the last cancer conference he attended of the use of Taxotere and mustard gas
derivatives (Muscatine) were emphasized also by the panel. The three
months only life extension was not emphasized, but one patient apparently has
been alive over a year (apparently this therapy has been tried for some time).
A vaccine maker, Cell Genesis, spoke and he
mentioned Dendreon. R.B. has told us that it doesn't work. The rep
couldn't comment (in fact was specifically told not to, but good practice is
not to knock your competitor), but sort of whispered that the first phase
three trial led to a subtest which is now in phase three trials. I think
cell genesis is in phase three trials at this time.
R.B. has told us the early vaccines only work for
three to six months. The problem was that only one marker was used: PAP.
Cell Genesis uses a whole bunch ( scientific speak for: I don't remember if it
was ten or twenty). Therefore when the prostate cancer mutates to
hide from one type of T cell for that particular marker there are
others ready. The usual approach of injecting long lines of cells in
several areas along a leg or arm are used and another trick is to revaccinate
every 2 weeks for, I think a year, then go to an every year basis
or something like that. Another question is can we someday immunize boys
for life?.
Dr. Katz told us that two things are important
when dealing with physicians: you must educate your physician and keep
him up to date where he may have been to busy to stay current.
Also it is important to have another physician to consult: a so called
"second opinion" physician. (I would also recommend Henri).
It turns out that for the spring loaded biopsy
that 12 cores are now standard. This number is another reason to educate
your doctor who may still be using only 9.
An outstanding urologist in private practice in
Memphis, noted that there is a tendency to over treat cancer. He also
talked about high intensity focused sound which can cure cancer in the case of
Gleason scores below 6 and which are small and well localized. The
ablation then does not lead to incontinence or ED. However it is
only now being approved by the FDA and one must go to Mexico for the
treatment.
We also heard about cryo therapy.
An interesting note was that if you do radiation
therapy, that when cancer recurs it is "worse".
One physician on the panel told us that there were
two studies of the value of support groups. He thought one was done at
Stanford. The finding was that attending a support group leads to a
longer and more satisfying life.
Sunday night, my banquet mate was a leader of
support group who gave me a lot of ideas for programs. He had a
psychologist who talked about how to reduce stress and a nutritionist for
example. He has more than forty attend and sometimes over a hundred if I
remember correctly. He has six callers who call 30 members on the week
of the meeting to invite them to the meeting. I don't think he does a
mailing. I have his phone number for future help.
My overall conclusion was that in a few years we
will consider the present therapies a crude an maybe even barbaric
practice (however they work and now are all we have).
Jerry Bylander, Managing Director, US Too! Texoma.
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