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ProtonPals e Newsletter
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June 2009
http://protonpals.net
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Greetings!
Welcome to the ProtonPals network and hope you find the information on our website ProtonPals and the monthly newsletters helpful in making your treatment decisions and in your recovery. In many ways I've modeled the ProtonPals after the older and more famous brotherhood which grew out of Loma Linda Medical Center and founded by Robert Marckini. ProtonBob is our national leader and together we're celebrating the really big story this month. It's the great news that Blue Cross Blue Shield in Texas, New Mexico, Oklahoma and Illinois rolled back their proposed policy change they had scheduled for June 1st. They will continue to reimburse for proton therapy treatments for prostate cancer. Bob and I have worked together in the past but more recently we started some cooperative efforts in educating the leaders in Medicare and Blue Cross-Blue Shield about proton therapy treatment. Along with presentations from the stakeholders from the M.D. Anderson Proton Therapy Center and others, Bob and I launched a massive letter writing campaign to the management at Blue Cross. (Read more in BobTales) We're happy to have you as a member of our brotherhood. We follow the University of Texas M. D. Anderson Cancer Center closely and hope you like the new e-Newsletter service. We are officially a 501 (c) ( 3 ) public charity as of June 9 and have applied for a grant. We're still working with the email tool including following up on some emails that bounced and finding a way to archive all of newsletters for easy access. If you know of a friend who's not getting the newsletter and would like to subscribe there's an easy way to do it, listed below.
We really would like to hear from you for a couple of reasons - To help out the next guy who's following in our footsteps looking for information.
- To make the newsletter and website much more 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 I had no access to personal anecdotes about experiences at the MDACC 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
Sincerely,
Joe Landry and Ban Capron
ProtonPals
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Insurance Reimbursement
Article Subtitle
It's official - On May 22 the Blue Cross Blue Shield (BCBS) parent organization, HCSC, for four states Texas, Oklahoma, New Mexico and Illinois called Dr. Andrew Lee, oncologist to many of us and the director of the Proton Therapy Center; to let him know they would continue to cover proton therapy for prostate cancer in Texas. Thanks to everyone who either wrote or called into to the BCBS headquarters. Dr. Lee wanted to relay his thanks to us for all the help. Your efforts along with a mighty push from the stake holders at the Proton Center in Houston and centers, helped stave off this second major move to cut the reimbursement for early prostate cancer treatments at proton centers. The first was Medicare's move last September when the Centers for Medicare Medicaid Services collected comments about the treatment. This is huge and if BCBS had gone ahead, then all the other private carriers would have followed along; paving the way for Medicare and the current administration to say this mode of treatment is experimental. Our next campaign should be to educate and influence the law makers and analysts who are drafting the new heath care plan in Washington. The only problem is that effort is moving very fast and not much time available to study their approach. The Sunday June 14th TV news carried Sen. Dodd (D) speaking about how the current administration's new healthcare approach plans to cut some $300 billion in unnecessary tests and screenings. In my opinion that means the elimination of early screening for PSA levels as well as tremendous pressures on any inovative modes of therapy. Pay heed! Luke M. one of our ProtonPals received a response from BSBS and our web site carries a copy. Way to go Luke in your efforts. (Read the BCBS Letter to Luke)
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Article Subtitle
The regular monthly support group meeting was held at the Proton Therapy Center on Thursday May 21, 2009. Ms Amy Stahl, Senior Clinical Dietician talked about the importance of various nutritents. Her PowerPoint presentation to the ProtonPals is on the
web site and you can (Read More) by going to the nutrition page. Part of our discussion following the presentation was about how nuts were nutritious but also how it may not be advisable to eat very much while undergoing therapy. Seems we've had more than one anecdote about how this can cause rectal bleeding and possibly should be avoided at least at first. There's a "one pager" on the web site where you can read how Kellog Crunchy Bars was the culprit in on emergency room visit. (Read More)
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Pedi Patients
Article Subtitle
Learning you have cancer is devastating as most of you who are reading this
know. But discovering your two year child is not able to move and has cancer is without a doubt even more so. As
prostate cancer patients we have on average, 50 to 70 and some 80 years to savor life and
make a difference. But that has not been the case for the young patients we meet at the Proton Therapy
Center. Some of them have just learned to walk, others are adolescents or teens, and it's obvious from their appearance they've had cranial surgery or having chemotherapy. Here's a story about a brave and courageous mother Susan Ralston's Story who's son Jacob was diagnosed with a spinal tumor in 2007,
and what she's doing to "pay it forward". Fortunately Jacob's grandfather had heard about proton therapy and after a consult with the oncologists at the Proton Therapy Center, Susan, her husband Jim and Jacob relocated to Houston from Virginia Beach for several weeks while being treated at the Proton Center. Jacob became a hit with all the patients at the Center and if you were there in the fall of 2007 you probably met the family. Susan and Jim created a foundation called the Proton Pediatric Foundation and has an outstanding web site full of information about proton therapy treatment.
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Insurance Strategies
Article Subtitle
The Pediatric Proton Foundation, founded by Susan and Jim Ralston, introduced earlier, has developed one of the best insurance strategy writeups that we've seen. She modestly referes to it as an overview, but it's near a complete manual in our opinion. The subject sections for detailed write up are: - What you need to know.
- Strategies for fighting the insurance company
- Tips for gaining approval
- Dialog with insurers
- Family Medical Leave Act
- HIPAA and your rights
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Genetic Counseling
Article Subtitle
For the support group meeting on June 25th, Thuy M. Vu, MS, CGC, a Genetic Counselor with MDACC will be presenting "Importance of Family History and Overview of the Genetic Counseling Process. Along with Lorraine and Sloane who arranged for this talk, I am particularly looking forward to it. On a very personal side I'm supporting my daughter who is being treated for breast cancer. When we first heard about the diagnosis, my friends at M.D. Anderson recommended she be genetically tested with a test called OncotypeDX. When the results were in she got some good news and the Recurrence Score indicated a low probability of remote recurrence. The assay, one of several key parts of the movement to personalized and molecular medicine, measures the expression of 21 genes to see what type of treatment would benefit a patient most. (Read More) In her case she will not have to receive chemotherapy. The same company will have an OncotypeDX for colon cancer in 2010 and I'm sure we'll have a OncoTypeDX for prostate cancer some time in the future. For more information about the meeting or to talk with the genetic counselor please contact. Lorraine Howard, LMSW,LCDC Phone: 713-792-5134
lyhoward@mdanderson.org
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My First Contact
Article Subtitle
It was Christmas Season 2006 and I was having lunch with an old classmate when my cell phone rang. I had been diagnosed with prostate cancer in late November and it was a somber season for our family. The call was from Advance Practice Nurse Haihong Cai from the Proton Center contacting me about scheduling a consultation session in January. On the way home I after lunch stopped by the Center to drop off my records. Nurse Cai was relatively new and filling in for Nurse Tai Ly for the holiday season. She let me know in no uncertain terms that I may not be accepted by the  Center. Like the old Groucho Marx joke, it seemed at the time that this may be one of those clubs that "if they would have me as a member I didn't want to join." But as you know I stuck with it and here I am a happy survivor 2 years later. Nurse Cai is Dr. Cox's Advance Practice Nurse and although she does handle some prostate patients, she has been working mostly with pediatric and thoracic cases. Haihong is from mainland China and has been in America since the 1990s. She has a MSN and BSN from the University of Texas Health Science Center, School of Nursing along with a degree from Lamar University. She likes gardening and her pets are tortoises and fish. She keeps busy with 2 teen aged sons who I'm sure are as bright and intelligent as Haihong. Haihong transferred to the Proton Center right after startup in 2006 and in that time has worked with many patients and coauthored a paper with Dr. Cox. If you happen to have a friend or acquaintance needs to contact Dr. Cox, Haihong will gladly answer your questions and put you in contact with him. She's at 713 - 563 - 9396 or hcai@mdanderson.org |
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Can you say Proctopathy?
Article Subtitle
A new one pager, one that I've avoided writing(and I think Ban has also) since the number of patients affected with this side effect are so few, is on our site for your consideration. Although the number of patients it affects is low if end up with these side effects which can last a few weeks to a few months it will definitely affect your quality of life and may make you housebound for a while. Dr. Lee has advised us from day one to be conservative when it comes to visiting a gastroenterologist, either to have a colonoscope or having any proctitis treated by your average gastroenterologist who has little experience with external radiation patients. Since some of the information on the "one pager"can be taken by centers with competing modes of therapy and groups intent on bashing proton therapy, we've secured it at a level. Of course if you're reading the newsletter you'll be able to get a copy of it in PDF format since you'll have the password. To access this document (Read More) and enter this password survivor This will seem like a bother to have to do this but remember it will not be open to the search engines of the world and you can get a copy attached to your email by writing or calling me. joe landry
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Skip the Carbohydrates
Article Subtitle
Nov. 13, 2007 -- Forgoing carbohydrates may slow the growth of prostate cancer, according to preliminary lab tests in mice. The researchers aren't making dietary recommendations for men. But they say the topic deserves further study.
"This study showed that cutting carbohydrates may slow tumor growth, at least in mice," Duke University urologist Stephen Freedland, MD, says in a news release.
"If this is ultimately confirmed in human clinical trials, it has huge implications for prostate cancer therapy through something that all of us can control -- our diets," says Freedland, who plans to start such trials next year.
Freedland's team split 75 mice into three groups:
Low-fat diet: 12% fat, 16% protein, 72% carbohydrate
Western diet: 40% fat, 16% protein, 44% carbohydrate
No-carb diet: 84% fat, 16% protein, 0% carbohydrate
The no-carb diet was modeled on a special diet sometimes given to prevent seizures in children with epilepsy, Freedland's team notes.WebMd Low Carb Another new article Read More
http://advancedprostatecancer.net/?cat=24
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"Cut to Cure?" Want to know your odds? Article Subtitle
Considering surgery for your prostate cancer? Are the relatively mild side effects you're experiencing leading you to complain a little bit?
Keep this in mind
- 3/4 of the men who have surgery are left impotent
- 1/3 of the men are incontinent,
- 1/2 of a percent die (1 out of 200) on the operating table
- There's a 35% failure rate at five years.
This is all published data. So,
what's a little blood in the stools for a few months? While I'm sympathetic it's not a bit deal when you consider the alternatives.
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OK Proton to Open July
Article Subtitle
The Oklahoma City proton therapy center officially will open to join the five U.S. centers currently in operation (LLUC in Loma Linda, California, MassGen (MGH) in Boston, MPRI in Bloomington, Indiana, M.D. Anderson in Houston, and UFPTI in Jacksonville, Florida) . The center is accepting appointments for consultations and will be officially opened on July 8th. News Article Oklahoma Center
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Anti-Cancer: Explore a New Way of Life Article Subtitle
Anti-Cancer: Explore a New Way of Life - Wednesday,
July 22
This is a free event sponsored by M. D. Anderson.
Forward this information to colleagues, employees, friends and family
members. |
| With teachings from his book
Anti-Cancer, 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 will share his insights
on how to:
- Adopt a science-based,
anti-cancer diet
- Recognize how stress can
impact cancer
- Reap the benefits of
exercise, yoga and meditation
- Minimize exposure to
environmental toxins
- Balance traditional and
alternative health care
Free Admission and
ParkingReserve your
seat today!
Wednesday, July 22
5:30
p.m. Check In
6:00 p.m. Program
M. D. Anderson Cancer
Center
South Campus Research Building
7435 Fannin Street at Old Spanish
Trail
Houston, TX 77054 Learn
More About Servan-Schreiber on YouTube Registration deadline: July 17
To register email publiced@mdanderson.org or call
713-745-0749
Get
more information
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About ProtonPals
Thank you for subscribing to the website and supporting the organization. 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 and Ban Capron
15806 Manor Square Drive
Houston, Texas 77062 - 4743
ProtonPals, Ltd.
ProtonPals, Ltd. is a 501 (c) (3) public charity
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A 501 (c) (c)
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