ProtonPals

The regular monthly group meeting of the PTC Proton Therapy Patient Group meeting will be on November 19th and will feature Susan Daum, who will address "Healthy Eating During the Holidays".  Ms. Daum is a Sr. Clinical Dietician at U.T. MDACC.  The meeting starts at 1:00 PM in the conference room PTC1.2004 and PTC1.2008.  November 2008 Group Meeting

About a week ago I got an email from a most interesting man who lives on Amelia Island Florida. I followed up with a phone call and as a result got to meet Dr. Jim Morgan telephonically.  Dr. Jim, an author and speaker, is also a January 2008 graduate of the University of Florida Proton Therapy Institute.  Jim sent me a copy of his most recent book to review, called  "Faith and Proton Therapy vs Prostate Cancer", which I just finished reading.  It’s a very well written and a personal account that takes you step by step on his journey to choosing and receiving proton therapy treatments.  As another reviewer noted, it’s light hearted and candid making it a very easy to read and an addition to "One Man’s Journey" published by ProtonPal Ban Capron on this site.

You can contact Dr. Jim at drjpm1999@yahoo.com , and purchase his book (ISBN: 978-1-934666-29-6) at selected book stores or from the publisher, High-Pitched Hum.  Quantity discounts are offered.

In gratitude,

Joe Landry April 2007 Graduate

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Ribbons, signs, lights greet boy’s return from treatment

By ELENA CRISTIANO - For the North County Times | Sunday, October 19, 2008 8:54 PM PDT ∞

Four-year-old Max Kleckner carves a pumpkin at his neighborhood party held last week to support his fight against cancer. (Photo by Jamie Scott Lytle - Staff Photographer)

Four-year -ld Max Kleckner wears a Superman cape at his neighborhood party held last week to support his fight against cancer. (Photo by Jamie Scott Lytle - Staff Photographer)

Four-year-old Max Spartacus Kleckner plays rough and tumble with the other kids in his Cardiff-By-The-Sea neighborhood as if nothing is wrong.
But something is terribly wrong.
It started out as a series of colds and ear infections that Max just couldn’t seem to fight off. When the right side of his head appeared slightly enlarged, the doctor said it was a swollen lymph node. Then, when Max’s eye seized, his parents rushed him to the hospital.
On July 4, four years from the day they got the long-awaited news that Max had been conceived, his parents, Mark Kleckner and Natalie Young, heard the words few parents can imagine hearing. He has a large, malignant brain tumor —- embryonic-type rhabdomyosarcoma. Within days, tests revealed the rare cancer had spread to Max’s bone marrow making it the dreaded stage IV, the most aggressive, deadly kind. Estimates of the survival rate for this type of cancer range from 20 percent to 50 percent.
Doctors told Young and Kleckner to treat each day with Max as a gift. Young says those are words all of us should live by.
Inoperable due to it’s location and size, the only true treatment option available to the family took them to Houston, Texas, for six weeks of proton radiation therapy under clinical trials at The Proton Therapy Center at The University of Texas M. D. Anderson Cancer Center.
The residents of the 2100 block of Montgomery Avenue, where seven other children were born within two months of Max, quickly banded together in an effort to find out what they could do.
Led by neighbors Rae Martin and Kimberly Tilton-Riley, they have created Lights Up —- Cardiff, a series of events and fundraisers designed to raise awareness for Max’s plight and help the family face the enormous costs of a fierce battle that doctors say will be lifelong. Max’s family has health insurance but it does not cover the travel expenses or loss of work. Besides, they say their policy’s lifetime maximum is likely to be reached within a year.
When Max and his family returned from Texas to their small coastal community on Oct. 10, they were greeted by gold ribbons and welcome home signs. Harvest and Halloween lights and decorations were strewn about the block. Max understands they are for him and says it is "really fun."
His mother, Natalie, said Max is continually thrilled to see the outpouring of love and support from the once "distant and disconnected" neighborhood. "I think the positive energy surrounding us is partly why Max’s treatment has been so successful so far," Young said.
This past weekend neighbors, friends and family gathered to bob for apples, carve pumpkins and continue to foster the community spirit that is rallying around Max’s cause. Max was there, surrounded by children, laughing and playing in the autumn sunshine.
Neighbor LaVonda Gollner, who works at the Solana Beach Child Development Center, attended the party and has been keeping a photojournal, chronicalling Cardiff-By-The-Sea’s support of Max.
"This is the first time I’ve met Max," said Gollner. "It’s beautiful how the community has come together to help him."
Organizers of Lights Up —- Cardiff are asking the residents of the "walking district" of Cardiff-By-The-Sea, which is west of Interstate 5, south of Birmingham Drive and north of San Elijo Avenue, to hang lights and decorations in a "Candy Cane Lane-style" demonstration of support for Max.
On Saturday, Nov. 8, from 4 to 7 p.m., there will be a fundraiser at the Belly Up Tavern in Solana Beach. Tim Flannery and Friends will entertain and there will be live and silent auctions, for which donations are sought. Tickets for the 21-and-older event are $60 and available at the Belly Up box office or www.bellyup.com.
To learn more about Max Kleckner and Lights Up —- Cardiff visit www.maxspartacus.com. Donations can be made to P.O. Box 372, Del Mar, CA, 92014.

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A reminder that Dr. Andrew K. Lee will be speaking at our October group meeting on Wed. October 22 at 1 PM to be held in the conference room at the Proton Therapy Center on Old Spanish Trail. 

If you are in the Houston area please attend.  This is an opportunity to hear about the center and to ask questions about treatment and recovery.   If you are not attending but have questions please forward them to Sloane Caskey, srcaskey@mdanderson.org  or Tai Ly,  tly@mdanderson.org  or me, jelandry@sbcglobal.net.

I have questions about the proposal by the Centers for Medicare and Medicaid Services to stop reimbursement for proton therapy for prostate cancer;  and what we as a group can do in a grass roots effort to make our views known.   This is the note I received from Bob Marckini (ProtonBob).

Dear Members,
Several members have brought to my attention the fact that the Centers for Medicare and Medicaid Services (CMS) have made a proposal to stop Medicare reimbursements for proton therapy for treating prostate cancer. They claim that proton therapy is more costly, not widely available, and that no current, comparative studies have been conducted to prove proton is better than conventional prostate cancer treatment therapies.
You can read about this at the following URLs:

http://www.cms.hhs.gov/mcd/ncpc_publiccomment_popup.asp?comment_id=498

http://www.cms.hhs.gov/mcd/ncpc_publiccomment_popup.asp?comment_id=360

Joe Landry

ProtonPal Graduate April 2007

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The Proton Therapy Patient Group meetings are starting up again after a summer vacation. The meetings
are held on the 4^th Wednesday of the month by the Radiation Oncology Social Workers at the Proton Therapy Center starting at one o’clock.  Next month’s meeting will feature Dr. Andrew K. Lee. 

Nurse Practitioner Tai Ly spoke at a well attended session consisting of mainly of patients undergoing treatment.  Two “graduates” Steve Kennedy and Joe Landry who live in Friendswood and Clear Lake attended.  Local attendance was definitely affected by Hurricane Ike recovery. 

Tai Ly has been battling breast cancer.  Starting in the fall of 2007, right after she completed constructiong her dream home in New Mexico, Tai was diagnosed.  She’s been through a series of treatments and surgeries including one she was recovering from at the meeting.  On another note, Tai was interviewed and is quoted by the National Nursing Oncology Magazine, ONS Connect, page 8   http://www.nxtbook.com/nxtbooks/ons/connect_200809/

An additional radiation oncologist, Quynh-Nhu Nguyen, M.D.,  joined the MDACC  Radiation Oncology’s Genitourinary service in August is now works with Dr’s. Lee and Choi at the Proton Center to treat prostate cancer in addition to other services at the Mays campus.   Dr. Nguyen received her M.D. degree from the George Washington University School of Medicine.  Her residency training was at University of Virginia and fellowship training at The University of Texas M.D. Anderson Cancer Center.

Fitness Facilities - Patients at the PTC –H have frequently asked about fitness facilities in the Medical Center area and we learned at the meeting that interim memberships at The University of Texas Medical recreation center are available to the patients of the Proton Center. With your patient ID card you can get an interim membership for 10 workout sessions for $40.  http://ae.uth.tmc.edu/recreat/index.html

Meeting Notes

Email Communications to Your Doctor  - Patients sending e-mail to Dr’s. Lee, Choi, or Nguyen should as a practice send a copy to Tai Ly as an FYI.  Tai will help you follow up with any questions or communications you might be looking for.  The doctors are so busy that even if they use their personal data assistants (Blackberries) extensively, sending Tai a copy will assure that your questions are answered.

Post Treatment Follow Up Visits and PSA Tests  - A “graduate” who lives a distance from the Houston area should definitely look to make the 3 month follow up at MDACC.  If you’re from out of town, the frequency and the timing of your visits is negotiable. The staff recommends that you use blood sample kits to have your PSA determined by MDACC laboratories. You may have an excellent lab in your city but if you want to measure changes in PSA levels or the all important velocity of change I think it’s best to stay with the MDACC labs.  We’ve seen large variations between some labs and MDACC.

Quality of Life Surveys (QOL) - Should be filled out as a baseline prior to treatment, at the end of treatment, every 3 months for a year, every 6 months for 3 years and once a year for 6 years.  For the other study which is the multimodality QOL, that compares to others who opted for a different modality of treatment:  the frequency is - pre- treatment, 3 months after treatment, 6 months after treatment, 12 months after treatment, then at 18, 24, 36, 48 and 60 months anniversaries.  The surveys will be used for comparative results on surgery, brachy, IMRT and PBT.

Diet, Gas and Beano – As my doctor, Dr. Lee took a very pragmatic approach to diet and recommended that I not make drastic changes to my regular diet.  However his goal, as the radiation oncologist was to have the clearest view of the field to be treated and you should be aware of the foods that produce gas. Gas will can displace the prostate gland and the goal here is to have the position of the gland to be precisely as measured during the simulation.  Also, in post treatment recovery, watch the amount of blood thinners such as Plavix, Coumadin and aspirins and lack of fiber that you take in.  Remember that some herbal medicines and teas may act like blood thinners as well. You may want to take a stool softener if warranted. We’ve had 2 sessions at the Proton Group meetings on diet and a summary of the talks including a booklet on nutrition for proton therapy patient are on the ProtonPals web site.  http://protonpals.net/nutrition/nutrition-2

Hormone (Lupron) Some intermediate and high risk prostate cancer patients are given hormones (neo-adjuvant therapy).  The risk level are determined by the stage, PSA levels, the Gleason score and the percentage of the glands with tumors, sometimes expressed as number or percentage of biopsy needles that are positive. Patients with Gleason score of 6 and 7 are treated at the PTC-H.

Colonoscopy - Have a colonoscopy prior to radiation therapy or wait one year post treatment before having the test.  If you choose to have a test, please inform your PTC-H before you have a colonoscopy. That way they can give you instructions on what to tell your GI doctors so they don’t biopsy or cauterize the bleeding at your rectum. The percentage is very low but there are some reports of rectal bleeding.  This could be aggravated by use of blood thinners or hard stools.  Treatments for rectal bleeding are the avoidance of hard stools with diet and stool softeners, suppositories, hydrocortisone, or argon plasma coagulation (APC) for the most severe.

J.E. Landry, ProtonPal and April 2007 Graduate
832-335-0353

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   The Proton Therapy Prostate Patient Group will start meeting again on Wednesday after taking a summer vacation.  Tai Ly  RN, MSN, APN, Nurse Practitioner will be featured at this meeting. 

For more information please call:
Sloane Caskey, LCSW
713-563-2362
Alicia Rubel, LMSW
713-794-5926

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Comment: I had my last treatment on June 6, 2008. We have always been told, “If something sounds to good to be true, it usually is.” I told my wife and several friends, “I think we have found the exception.”  In fact, I tell them, that in one trip to the dermatologist, she caused more pain than 38 cancer treatments! I cannot say enough about the proton treatments and really how easy it is.On September 8, 2008 I went for my 3 month checkup. Not knowing quite what to expect, Dr. Lee said we would hope for a slight decrease in PSA. It dropped from 5.5 prior to treatment, to 1.5 in three months! More than just a slight drop. I think he was please and I know we were very pleased. Now just sit and wait for that next 3 months to see how lower it can go.                                        Willard Boone  

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Dear ProtonPals:

Although it’s been only a week since our last mailing, I felt we needed another note before the end of May and wanted to call your attention to some new items. 

1) A very nice note from Lyle Gilroy about his experience in Houston.  I’m pleasantly surprised that many of our Pals at the Proton Center find that Houston is a great city and are not shy about letting folks know about it.   

Here’s one of the best stories I’ve received in the past year about how you can "create" a support community where ever you go, at the Proton Center, at a local church and at one of our great museums.   I’ve been remiss in not following up any sooner and what I found out this morning is that there were two families who had great experiences working with the Museum of Natural Science.  In addition to Lyle, Ken and Jan Caufman, who were residents in 2007, also found the museum family extremely welcoming.  The volunteer coordinator, Mrs. Keller, is very open and approachable and if you’re are planning your two months stay in Houston, currently in treatment or if you’re a resident, she would welcome a contact and bring you into her volunteer "family".   

The note from Lyle.

Joe:  I want to "Thank You" for your e-mail I received yesterday.  I would like to say how much my wife and I enjoyed our "vacation" in Houston Texas while I was taking my Proton Therapy treatments.  We not only found a "Proton Therapy" family, a "church" family, but we also found a "family" at the Houston Museum of Natural Science. 

Betty & I went to the volunteer office of the Houston Museum of Natural Science after chatting with friends from our home town of Loveland, Colorado who also graduated from the Proton Therapy  center in April 2007, and volunteered at the Museum.  We served as "docents" at the butterfly center at the museum but there are many other areas where help is needed.  We had a great time with a group of "super" people serving two days a week (optional) for approx. 2 hours a day.  It is a great opportunity to serve and do some fun things.  I was able to  read only so many books,  and  put together only so many puzzles.  Let me know if you could chat with the great people at the Houston Museum of Natural Science, and then inform the patients receiving Proton Therapy, particularly the new patients, of this great opportunity to volunteer.  The contact person at the Houston Museum on Natural Science is:

                      Sibyl Robertson Keller, Volunteer Recruiter and Education Coordinator                           

                      One Hermann Circle Drive

                      Houston, TX  77030-1799

                      713-639-4656 —- Fax  713-639-4755

skeller@hmns.org

Houston Museum of Natural Science

Get Involved at Houston Museum of Natural Science

  Lyle Gilroy,  Loveland, Colorado

2) Here’s another great testimonial to our fair city, Houston from Trevor Bradway. That’s quite a good review considering Trevor lives in one of the most beautiful areas in the US.  He had a good experience with the center and wanted to let you know some great restaurants that he had visited.  Personally, I’d add two more to the list and that’s Chrurrasco’s and Amazon Grill, both run by Michael Cordua Restaurants.  
The note from Trevor.

Hi Joe,  
                My name is Trevor Bradway (from Vail, Colorado). I finished up my treatment on April 17 but stayed on in Houston for an additional week because we enjoyed the area so much. Everything went very smoothly and I have not had any after effects. That said, I soon realized that many of my fellow patients had very little idea about where to go out to eat (other than the few local places). To meet that perceived need I put together a list of area restaurant recommendations and distributed it to all the patients I came across.  My wife and I had checked out many of these restaurants and the list was vetted by several folks “in the know.”  I believe Tai may now be including it in the welcome package for future patients. A copy is attached; feel free to publish it on your web-site if you believe it might be of some value.

Best Regards,  Trevor Bradway  

http://protonpals.net/nutrition/trevors-restaurant-recommendations

3)  Sloane Caskey and her staff regularly host support group meetings at the Proton Center on the last Wednesday of the month.  The next meeting is on May 28th at 1:00 pm. and the talk will be on "Nutrition and Prostate Cancer".  This makes for an opportunity to meet for lunch in one of the restaurant’s Trevor recommended.  If you’re interested please let me know and I’ll promote with the web site and we’ll pick a place to meet.  Isn’t this a nice tie in with a list of restaurants in Houston? 

http://protonpals.net/wp-content/uploads/2008/05/support-group-flyer-may-2008.pdf

Please let Ban and I know if there’s a topic you’d like to see addressed in our mailings or on the web site.

In Gratitude

Joe Landry,  Ban Capron

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Support group meeting at the Proton Therapy Center on May 28th. 

support-group-flyer-may-2008.pdf

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On March 26, Mary Hughes, an Advance Practice Nurse presented, “You Lost that Lovin’  Feelin’ to the monthly Proton Therapy Center support group meeting of approximately 15 men patients and their wives.  Mary is a member of the M.D. Anderson Psychiatric Service with long and meritorious service with the clinic.  Mary Hughes APN 

The MD Anderson Clinic has many facets to it’s approach to cancer treatment and for every month I spend reporting, I find new services available to us.  The Psychiatric Services was one of them.  It deals with consequences of cancer and treatments that affect patients in areas of depression, sleep problems, anxiety, personality changes and memory problems. Behavioral techniques and medication may enhance the quality of life for patients and their family members.

The topic Mary presented was so complex that I hesitate to even headline it.  I included the presentation for your convenience and suggest you take a look at it.  It’s probable that the sexual aspects of your life were not changed as a result of having proton therapy treatment but if it did change and you want to do something about it, the way to get referred to the Psychiatric Service for a consult is to contact your nurse at the M. D. Anderson Proton Center and ask to be referred to the services and Mary Hughes.  A PDF copy of the presentation.    You’ve Lost That Lovin’ Feelin’ 

Updates and Additions.  We continue to work on the web site to make improvements and making sure that visitors understand that while we are patients of the treatment program and provide information for others on the same journey, we’re exclusively patient-sponsored and not affiliated with M.D. Anderson Cancer Clinic Proton Therapy Center. 
Update to Side Effect Papers
Ban wrote a general paper on Erectile Dysfunction ED General Discussion that we’ve placed on the site. It is more comprehensive and represents a good bit of work by Ban.  The photo album was edited within the last week. 
Another Man’s Journey
In looking for more material for the newly diagnosed man and information on the Hitachi equipment used in the Proton Beam Center, I made contact with one of the first patients of the clinic, Dr. W.A. from Baton Rouge. Dr. W sends his greetings wanted you to know that he’s doing very well.  He led me to a video of him and his wife produced by Hitachi while a patient at the Proton Center.
A Short Survey
Ban and I and the team would really like to hear more from you and I thought that a form would make it easier.  You can fill it out anonymously if you like and you can e-mail us directly if you dislike surveys. 

In gratitude
PalJoe

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Dear ProtonPal,

Here’s wishing you a Happy Easter and continued good health, along with a reminder that there will be a support group meeting next week. It will be on Wednesday March 26th at 1:00 PM in the Proton Therapy Center’s first floor conference room. The featured speaker this month will be Mary K. Hughes, a Psychiatric Clinic Nurse Specialist who specializes on issues related to sexual dysfunction and intimacy issues.The meeting notice flyer is on the web site under the topic General News. 

Also since our last note Ban and I have received many notes from you and we’ve have worked diligently over the past weeks to write and update the "one page" summaries.  Although they’ve been on the web site this is the first general circulation for some of the summaries.   

As we reviewed the comments we receive, we continue to be grateful that you are doing so well and that this technology was avaliable to us.  While there are some who are in their post treatment recovery and waiting for the testosterone to increase or the physical stamina to return, we believe these reports confirm that the treatments we were given are very precise and well tolerated so as to cause no serious side effects.

We are attaching updated copies of Energy Level, Erectile Dysfunction with Hormonal Treatment, ED without Hormonal Treatment, Urinary Dysfunction and PSA Post Treatment Trends. 

Our ProtonPals web site is continually being updated and improving so check it out. There are two new links to other proton internet sites, http://www.ricksprostatecancer.blogspot.com/  and http://health.groups.yahoo.com/group/protoninfo/ who have found the ProtonPals site. Rick Otey (MPRI) and Fuller "Sonny" Jones (LLUC) and they have featured our web site in one of their notes to their membership. As some of you know I’ve kept the visibility of the site below the horizon of the search engines for several reasons;  1) it was under construction and 2) I’d like to shield the comments and e-mail addresses from searches used by spamers. We’re just about ready to reveal the site to the search engine internet crawlers (Google calls theirs Googlebot and Yahoo Slurp) who will find us in a day or so and make it easier for newly diagnosed patients to find us when they search the internet. Providing information to new PC patients is one of our main reason for being.

The membership has grown to almost 200 and during March the web site is averaging 22 visits and 769 hits per day. Some of these visits come about in the development of the site.   If you have your own mailing list of friends who have been treated at MDACC Proton Therapy Center, please let them know of the ProtonPals site and encourage them to join. http://protonpals.net .     

On this Easter Sunday morning, I’m also grateful that Ban joined me to become very active in development of the web log and share his work with  you, as I am thankful for all who have joined the group and supported us by providing your anecdotes.  Also want to thank the leadership group for helping me bring this web site and news letters to you.   

In gratitude,

Joe Landry, PalJoe - April 2007

Ban Capron, PalBan - February 2008

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