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LiveStrong, Enjoy Life and Excercise

Just received a note from one of our ProtonPals with news of his world travels and also how he chose proton therapy and the MDA PBTC.   Clif’s activities reminds me of the yellow Lance Armstrong wrist band that I’m wearing and how I’m not following it’s directive.   The band says LiveStrong and is part of Lance’s foundation campaign to get support for the  $3 billion Proposition 15 that was approved by Texas voters. 

I found out about proton therapy from the internet.  When I was first diagnosed in Feb 2007 I went into the usual panic mode which included reading books, visiting a three doctor multidisciplinary team at my alma mater, Duke University,and visiting at John Hopkins.  Up to that point there had been no mention of Proton Therapy.  Although I signed up for surgery at Ohio State, I guess I still wasn’t convinced and continued to research on the internet.  That’s where I came across Loma Linda, proton therapy and “Proton Bob”.  I spoke to the folks at Loma Linda but there was a longer wait than at MDAnderson so I flew to Houston to consult with Dr. Lee.  He felt I was a good candidate and recommended two hormone shots with the treatment.  I finished protons in July 07 and so far so good with minimal side effects. Dr. Lee emphasized the importance of exercise and I follow a daily walking and exercise regimen. I’m presently in the south of Chile for two months of their summer.  This is a beautiful part of the world with active volcanoes and beautiful lakes and mountains. The end of March I will be skiing in Colorado for a week and back to Houston for my 2nd follow-up visit in April.  That’s all for now.  My best wishes to all.
Clif T. 

Support Group Meeting at the Proton Therapy Center 1/23/2008

Dr. Andrew Lee spoke at the support group meeting on Wed. Jan 23rd.   Over 30 persons were in attendance.   Several “graduates” attended.   Dr. Lee responded to several questions that had been submitted, and took an equal number of questions from the floor. 

Here were my “keepers” from the meeting.  If you have additional items please post them here as a comment  to this note or let me know and I’ll circulate to the newsletter mailing list.

1)  Within the past 3 weeks I’ve e been contacted by 4 recently diagnosed men who were considering taking the proton therapy treatment.  Sadly I think I did a disservice to 3 of them because I didn’t ask about their pathology results since I didn’t want to pry.  As they called in for appointments or went in for consults they found they were not candidates because of a previous medical issue(lukemia in remission),  stage T4 diagnosis and a high Gleason score.  The fourth man met the criteria and has been scheduled for a consult.   Here are the  criteria used to screen candidates as Dr. Lee relayed them to us on Wed.   Cancer patients who have a PSA greater than 20, a Gleason score of 8,9 or 10, T stage of T3d and T4,  nodal involvement, or a hip replacement are not candidates for proton therapy.

2)  After 18  months of operation the proton therapy at the MDA Proton Center is being well tolerated and results are above the expectations of the medical team.   It’s still much too early to publish results but Dr. Lee is optimistic and expecting that the results will be better than what’s been previously published.  Two key factors that are driving this improvement  are 1) the control over targeted tumor area is more precise, and  2) the dosage is higher than used a few years ago. 

3) “Graduates” were cautioned that care should be taken in having a colonoscopy and  Dr. Lee recommended that we wait a year after completion of treatment.   Since proton therapy is relatively new, and not many colonoscopists are versed in the therapy, some of their actions may cause inadvertent injury to the rectum as they take biopsies.   If you have any questions please contact Dr. Lee or Dr. Choi.

4) There was considerable amount of discussion over PSA results.    Summarizing as best I can without having had Dr. Lee review these notes here’s what I heard.  The PSA nadir (lowest reading) is reached on average around 18 months after completion of treatment.   There is no absolute number that one should look for after treatment and having a high PSA (called PSA failure) is not specific to cancer.    There are many things that will cause PSA readings to increase like manipulation during an examination, inflammation, bacterial prostatitis, urinary retention,  exercise like riding a bike, and ejaculation.  ( there is an article in this web blog about activities  you should avoid before having your PSA tested, including a DRE as some urologists have done prior to drawing blood). 

http://protonpals.net/wp-admin/post.php?action=edit&post=46

5) New PSA serum tests.  The current PSA test was developed as a screening tool but now also commonly used to track patient recovery.  It’s not necessarily a marker to cancer and more specific serum markers tests like EPCA and EPCA-2 developed at John Hopkins are waiting for FDA approval.   The method is not proven and much testing remains to be done.  Quoting Dr. Patrick Walsh, “EPCA-2 could help determine which men with abnormal PSA levels have prostate cancer. But it’s possible that EPCA-2 may even replace PSA one day as the screening test of choice.”

http://urology.jhu.edu/newsletter/prostate_cancer_discovery_91.php

6) There were quite a few questions the hormone therapy but I don’t have the specifics to report.

7) The therapy(pencil beam or spot scattering) for the 3rd gantry was been recently approved by the FDA and the  equipment is being commissioned  for clinical use and will be used starting this summer.  Hitachi, the equipment manufacturer for the M.D. Anderson Proton Therapy Center received the approval and will undoubtedly implement this therapy in other locations, however I believe that 3rd gantry was where it was developed and the tested.

jelandry@sbcglobal.net

Activities that will elevate PSA

 SOURCE: BOB Tales - Monthly Newsletter to Members - October 2007 Bob Marckini, Editor.

IMPORTANT NEW FINDING FROM JOHNS HOPKINS?

I received a bulletin though my Google Alerts last month indicating that Johns Hopkins reported a significant new finding that, “should save men with early prostate cancer from making any irrevocable decisions too hastily.”

And, that new finding? Having sex within 72 hours of your PSA test can produce a false reading.

Hello… Isn’t this old news? We’ve been talking about this for five years, along with the fact that there are some conditions that can cause false readings for up to 6 weeks. It’s in my book, in two places.

This information was published in the August 1998 Journal of Laboratory Medicine. Here are some other things that can cause false readings, from page 190 in my book.


Condition/Manipulation Effect on PSA Increase Persists
Acute bacterial prostatitis 5-7 fold 6 weeks
Acute urinary retention 5-7 fold 6 weeks
Exercise - bicycle 0-3 fold 1 week
Prostate Biopsy Very variable 6 weeks
Prostate massage Variable 6 weeks
Ejaculation Variable 3 days
TURP Very Variable 6 weeks