 |
 Friend-to-Friend
|
|
|
|
ProtonPals e Newsletter
|
July 2009
http://protonpals.net
|
|
|
 |
Greetings!
Welcome to the ProtonPals network. I hope you find the information on our website and the monthly newsletters helpful in making your treatment decisions and in your recovery. We encourage you to refer your friends to the site and to subcribe to the newsletter. ProtonPals SiteIt's Official ProtonPals is now a public charity organization. In early June I received notification from the IRS classifying the ProtonPals as a 501 (c) (3). Ban Capron, Peter Taaffe and I had applied for this exemption for a couple of reasons. The prime one being liability protection this classification offers us in the operation of the web site and the second being able to seek grants and tax deductible donations from the public in order to support more education events of the organization. Thanks to volunteer efforts we're able to do this work with a very small budget. With a larger budget we will be able to acquire use new tools like this newsletter service and professional web developments.for your use and start outreach programs. Now that we have this exempt classification, I've applied for two mini grants from my incumbent employer, ExxonMobil, from which I retired in 2000. My incumbent company has always done a really fine job in community support and public giving - either by outright grants, matching retiree and employee contributions to educational and cultural institutions, or in our case matching volunteer hours worked at a public charity. I applied to the Volunteer Involvement Program where the ExxonMobil foundation will match my volunteer hours worked with mini quarterly grants. On the outreach and education efforts several of our members have given presentations to civic clubs and we'd like to encourage and formalize this effort with advertisements, prepared presentation material and potentially a "speakers bureau". In September we will increase our outreach and networking area by attending and participating in the Anderson Network Conference where I've reserved an exhibitors table for Sept 11 and 12. Dr. Andrew Lee will be speaking in one of the break out sessions. Thanks for joining and please let us know how we can help you. We're happy to have you as a member of our brotherhood. We follow the University of Texas M. D. Anderson Cancer Center closely by tracking new announcements, attending the support group meetings, and attending some of the educational opportunities. We really would like to hear from you for a couple of reasons - To help out the next man and family/caregivers who's following in our footsteps looking for information.
- To make the newsletter and website much more valuable, interesting and relevant.
Several of the Pals have networked over the past 2 years to provide feedback in order to serve you. Unlike when I was diagnosed in November 2006, where we had little or no access to technical information about the MDAnderson Proton Therapy Center, now we do. I'm asking for your help in keeping it current. Let us know how you're doing so we can pass this on to the next generation of newly diagnosed patients. Remember " You can never pay back; but you can always pay forward.", Woody Hayes
Your Pals,
Joe Landry, Ban Capron, and Peter Taaffe
ProtonPals, Ltd.
|
|
Living With, Through, and Beyond Cancer
Anderson Network 21st Annual Caregiver Conference
Article Subtitle
Would you like to...
... Be inspired?
... Connect and share with other cancer survivors?
... Hear from top cancer experts?
... Have fun?
... Meet other Pals from the Proton Center?
The ProtonPals is lending it's support to the Anderson Network (the large volunteer organization) by attending and being a conference exhibitor along with about 20 other survivor organizations. Marcia and I have signed up and we will attend this conference being held on September 10, 11 and 12th. I hope you'll find the agenda interesting and can fit it in your schedule. A small fee covers the conference as well as all the meals on Thursday, Friday and Saturday. The banquet Friday night will feature Hoda Kotb, host of the weekly NBC syndicated series "Your Total Health," co host on NBC "Today" show, and a breast cancer survivor, as the keynote speaker at the Houston Marriott Westchase. Dr. Lee is speaking at the Saturday breakout session and it's an excellent opportunity to come to see him again. It also offers us an opportunity to get together at the Marriott afterwards for a mini reunion. I encourage the many Houston Pals and out of towners who might arrange your follow up visit schedule to be there that week end. Please contact me about getting together that evening, September 12th. For more information and read more Full Conference Schedule
|
|
Dr. Lee Speaks at Anderson Conference
Article Subtitle
Please check out the M.D. Anderson volunteer network conference this year. It's titled, " Living With, Through and Beyond Cancer 2009 and will be held in Houston at the West Chase Hilton on September 10, 11 and 12th. Marcia and I will be attending our first conference and looking forward to it. Along with the Dr. Lee speaking at a breakout session on Saturday, there are other internationall known speakers and M.D. Anderson leaders.
We're planning to "host" a ProtonPals exhibitor's table at the conference where we will inform the attendees about the ProtonPals organization and prostate cancer treatment and the Proton Center.
Attendance is expected to be around 500 survivors and families. There's a moderate fee of $75 to cover all the three days of the conference to include meals and a banquet on Sat.
|
|
My Journey by Robert Spencer
Article Subtitle
About a week ago I received an in depth and very well written note by Robert about his personal background relative to prostates cancer. He outlines for us his approach to excellent health over the past twenty five years, his confrontation with prostate cancer two years ago and his decision to be treated at the proton center. With Robert's permission I posted the entire note on the web site along with the journies of other Pals, the first we published being Ban Capron's My Journey along with a photo journal. Robert thinks there are some things you need to know in managing your health and making a decision to treat. :What you need to know:
- PSA (prostate specific antigen) level of 4 is NOT the beginning guide
for concern as some GPs (family doctors) believe.
- Any change shown in PSA test is an indication of a problem, acceleration
is a very concerning circumstance, no matter how low the level.
- For certain, have an annual physical with a full blood count including
PSA and a DRE (digital rectal exam) beginning at age 50.
- Chart your blood test results yourself for each year and ask/demand for a
copy of your blood test results.
- If your annual PSA changes by 20 % or more change the interval for your
PSA test to every six months.
- If a hard spot is located by DRE go for the biopsy.
- Consult with other doctors, surgeons, radiologists, and of course your
GP.
- DO NOT ELECT WATCHFUL WAITING! (my opinion and I am firm)
- Seek out the best medical facility you can find, preferably where a
medical school is located with the latest knowledge of the disease.
- Take your health into your own hands. Consult with professionals with
different treatment regimes.
- Talk to your friends and you will be surprised how many other men have
experiences with prostate disease, cancer and other problems.
- If prostate cancer is suspected or confirmed have a colonoscopy before
you treat the cancer.
- All treatment centers will want a five year history of your PSA, a
recent CAT, MRI, and Colonoscopy before they will accept you for radiation.
KEEP RECORDS
- Reduce fat intake drastically, limit red meat and fried foods as doctors
and researchers agree that over weight, obesity and fat contribute to prostate
cancer!
- Know your family history of the males and prostate cancer.
- If you have prostate cancer prevail upon your sons to start early
surveillance as the possibility for them to develop prostate cancer is twice
that of the general male population.
If you are older and have prostate cancer it is urgent that you
have treatment before the Obama medical plan is adopted as there are currently
movements to have Proton treatment not allowable for Medicare, and Blue Cross
Blue Shield because of cost. Also the current administration has indicated that
older people will have less access to costly treatments. No matter your
politics, there is a reality coming that will limit all expensive medical
procedures especially for the aging populations. We published Robert's entire article and you can read more at My Journey - Robert Spencer
|
|
Fireman's Fireman
You are the General and your Body is the Battlefield
As Lorenzo Abundiz finished his treatment at the proton center, several of his fellow Houston firefighters joined him in celebration of this most recent milestone. Lorenzo or "Mongo" as he is called was stayed with one of the local fireman's organization during his stay in Houston. I met him at the Center and heard a bit of his story. The rest I filled in by going to his web site and have added a couple of clips here for you. For most of us these actions are far from our reach and capabilities and will not come our way again but it's an inspiration to us all.
"Firefighter/Engineer Lorenzo Abundiz (Santa Ana, California, USA) felt he had it all. He also felt invincible. His fellow firefighters nicknamed him "Mongo" because of his size and strength. He felt honored to be a firefighter and had a passion for his job; so much, in fact, that he had been named a "Fireman's Fireman" by his comrades because he put so much heart and enthusiasm into performing his duties. Like many of his buddies in the fire service, he would do anything to save anyone, including animals, from life threatening situations. He even saved his fellow firefighters. And for that specific reason, in 1992, Abundiz was awarded the California State Firefighters Association's Medal of Valor after he rescued firefighters trapped under a burning facade. The rescue was recreated for television on the program "Rescue 911," narrated by William Shatner, and first aired on February 4, 1992"
From a recent posting on the Code 3 for a Cure foundation site, I've included his inspiring note.
"Please remember, for those of you who are diagnosed with cancer: YOU are the general in this battle, because your body is now the battlefield. The doctors, oncologists, etc. are your soldiers who will provide you with information on the type of enemy you're fighting, but you are the one who will make the decision on the final battle plan. Don't panic if your doctors says "cancer," just get ready to fight and marshal all your forces. Remember, you have your family, firefighters, friends and doctors who are on your side for support. In the three cancer battles I have experienced, I have learned that early detection is the key to providing you more options on the kind of weapons you will have against cancer. Don't cut yourself short on options. Pay attention to your body for any warning signs, and get those early preventative exams that will provide you a fighting chance in the war against cancer. Another great secret weapon against cancer is positive thinking. Stay healthy, try and utilize all your safety equipment, DON'T LIMIT YOUR OPTIONS, get those early screenings, and hug a beautiful tree. God bless you all. I wish you good health and peace this summer. Lorenzo Abundiz President & Founder Code 3 for a Cure Foundation" Code 3 for a CureHouston Hospitality
|
|
Proton Therapy over IMRT - Clinical Results
Article Subtitle
U. OF PENN. ONCOLINK ARTICLE SHOWS DIFFERENCE BETWEEN PROTON
AND IMRT
An article published recently by the University of Pennsylvania, Abramson
Cancer Center on their OncoLink website proves conclusively, in my opinion, that
proton therapy is far superior to IMRT when it comes to radiation deposited on
both the rectum and bladder. The article was based on studies published in the
International Journal, Radiation, Oncology, Biology and Physics.
Two comprehensive tables in the article show in great detail, the differences
in radiation deposited on the rectum, the rectal wall, the bladder and the
bladder wall.
In summary, with IMRT, the rectum sees 2.4 times the radiation (34.8 vs. 14.2
Gy), and the bladder sees 1.5 times the radiation (28.4 vs. 18.4 Gy) than with
proton therapy. We know that radiation to the rectum and bladder can cause
genitourinary (GU), and gastrointestinal (GI) morbidity (side effects). So it
stands to reason that if these body parts see significantly more radiation with
IMRT, then the potential for unpleasant side effects would be greater.
|
|
ProtonPals will be represented at the Conference
The Pals organization will be an exhibitor at the Anderson Conference. We'll be there to answer guestions and to network with other survivor organizations. I'll be there with information, the web site on display and a PowerPoint presentations for those who might prefer to see a photo journal of the Proton Center. Please consder attending the Survivors Conference as well as volunteering for a slot help me at the ProtonPals outreach and exhibitors table.
| |
|
Anti-Cancer: Explore a New Way of Life
Article Subtitle
| On Wednesday, July 22, I attended a talk along with Thomas Reed who's a recent graduate of the Proton Center and a ProtonPal. The session was sponsored by the Integrative Medicine Department of M.D. Anderson Cancer Center and we heard the author, David Servan-Schreiber speak about Anti-Cancer: Explore a New Way of Life - on Wednesday, July 22.
Bottom Line: Our bodies are in constant equilibrium with cancer cells that are continually circulating and present in our bodies and only by having things in balace do we keep some of the awful diseases at bay. So the question I had was - "now that the horse is out of the barn so to speak and I've been diagnosed with cancer, is it too late to try to close the gate or is there something that can be done? Dr. David faced the same question 15 years ago when he was diagnosed with a type of brain tumor with a very short expected mortality or mobidity as it's termed. When he looked at the reported expectec mortalities, saw his mean survival time was like 18 months. Only looking at the mortality distribution curve he also saw it tailing off into the future. It's called long tailed statistices and quite a few persons survived much longer than 18 months and he wanted to know how to shift the odds in his favor and move down the curve and increase his longevity. He was able to do that with a serious change in life style and now over 15 years later he's alive and well |
| Here are his teachings from his book Anti-Cancer, written by the international best-seller, David Servan-Schreiber M.D., Ph.D., a dedicated scientist, doctor, acclaimed author and cancer survivor, will change the way you think about healthy living and cancer prevention.
He shared his insights on how to:
- Adopt a science-based, anti-cancer diet
- Balance traditional and alternative health care
- Recognize how stress can impact cancer
- Reap the benefits of exercise, yoga and meditation
- Minimize exposure to environmental toxins
Learn More About Servan-Schreiber on YouTube
| |
|
Say What?
"For Men Over 65 Doing Nothing is Pretty Good", she said.
Recently I got a note from the Texas Republicans "The current administration is going to their old bag of tricks to pass the new health care bills - MISDIRECTION, SCARE TACTICS, THE BLAME GAME and FLAT OUT DECEPTION." In my opinion I'm seeing misdirection and flat out deception from the media. Journalists and bloggers all over the country are using a study done by an internist and infectious disease specialist from Stanford. Daniella Perlroth is with the Center for Health Policy (affiliated with the Veterans Administration) has massaged results numbers and concludes the following in the note below. (As our director has been know to point out about some notable quotes in the press - note that she's not a urologist, not an oncologist, not a radiation oncologist, nor working in an international cancer center and need I say she was not born with the subject gland that now has a tumor.) This is verbatim from the article. "In her studies, Perlroth found that, for men with cancer confined to the
prostate, the cost of treatment over two years was $23,000 for surgery, $50,000
for IMRT, and almost $29,000 for brachytherapy, in which tiny radioactive seeds
are implanted in the prostate.
Especially for men older than 65, she is partial to watchful waiting, which
costs $2,436. "Doing nothing is pretty good," she said.
Because SBRT is so new, Perlroth could not get data for it or an even more
expensive and controversial emerging technology, proton-beam therapy. (Highmark
also has a proposed policy on protons that would allow the treatment for some
men with prostate cancer when "reasonable and necessary." The University of
Pennsylvania plans to open its new Roberts Proton Therapy Center in late
fall.)" Debate on Prostate Cancer Treatments
|
About ProtonPals
Thank you for subscribing to the website and supporting the organization. You'll receive the monthly newsletter around the 15th and it will include notice of the monthly support group meetings held at M.D. Anderson Cancer Center Proton Therapy Center. In addition we'll may send out one additional email of special events or news that are of interest to the group. ProtonPals is a group who chose proton beam therapy to cure their cancer and were treated at the University of Texas M.D. Anderson Cancer Center Proton Therapy Center in Houston, Texas. The "Pals" formed a network of Pals in order to: - Stay up to date with treatment cure results
- Provide support to others and Center activities
- Be informed on any side- effects
- Promote proton radiation since it's widely regarded to have a significant advantage over conventional x-rays.
- Attract and nurture more Pals who support our cause, patient-to-patient and friend-to-friend
Joe Landry, Ban Capron and Peter Taaffe
15806 Manor Square Drive
Houston, Texas 77062 - 4743
ProtonPals, Ltd.
ProtonPals, Ltd. is a 501 (c) (3) public charity
I
A 501 (c) (c)
O
|
|
|
|
|
 |
|
|
|
|
|
|
