ProtonPals

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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SURVIVING PROSTATE CANCER – by Terry Lavy (CURED 10/2/08)

One of the most alarming calls I have received was the one from my urologist when he said   “I’m sorry to inform you but your biopsy has shown that you have prostate cancer”! 

My first reaction on March 4, 2008 was shock and disbelief, since I had had no symptoms or any real reason to be suspicious other than the fact that my annual PSA reading was 5.1 whereas 15 months earlier it had been 3.85.  Two of my family doctors had indicated to me that a PSA of 4.0 was acceptable (not really suspicious for someone 70 years old and I was 72 at that time). I now know that some with a PSA of 2.0 may have cancer and some with a PSA of 15 could be cancer-free.  A 12 to 24 biopsy sample is the real criteria needed to determine the presence or absence of prostate cancer.  A slow rise in PSA level is expected and acceptable as one ages; however, rapid increases or any increase of 0.75 between checkups should result in you getting a biopsy as soon as possible.

Some very good news regarding prostate cancer is that most forms are relatively slow growing and one of the easiest kinds of cancer to cure!

It is now 39 days since I completed my 38-session Proton Therapy Fixed Beam Radiation (PTFBR) at M.D. Anderson in Houston, Texas!  I feel very fortunate to have had the opportunity to receive what I believe to be the very best and easiest treatment currently available.  Since I had never spent a night in a hospital and am not very fond of knives and needles, I was pleasantly surprised to learn that PTFBR patients were being routinely treated (and cured as stated by many, many former patients) with no cutting, no pain, no catheters, no incontinence  or other side effects!!

Within 2 days of my local urologist sitting down and explaining in detail five or six of the common methods of eliminating prostate cancer (and never mentioning PTFBR) and attempting to set up a treatment date for me, I had the ultimate good fortune of being contacted by a recently treated M.D. Anderson PTFBR patient.  After informing him of my 5.1 PSA and Gleason score of 7, he immediately exclaimed “Do not worry one more second about your cancer- you can assume that your cancer is a thing of the past.”  He knew that my scores qualified me for PTFBR treatment at M.D. Anderson (PSAs under 20 and Gleason scores under 8 qualify). He gave me their hot-line number (713-563-9398), and the next day I called them to inquire about his optimism and their treatment.  The secretary confirmed all he told me; however, the waiting list of 4 to 6 months and the 5-day a week treatments (38 over a 2-month period) made me skeptical whether I could arrange that.  With immediate encouragement from my wife and family I made the decision to get on their list. 

From that moment to this time my apprehension regarding my prostate cancer has been totally gone. We found excellent and relatively inexpensive housing (40-foot trailer rental) at a RV Court about 8 minutes, and little traffic, from the Proton Treatment Center.  The professionalism of the doctors and staff and the camaraderie of the other 50-plus patients completing similar treatments made this a memorable and enjoyable (in spite of 3 hurricanes, including one where we had to evacuate twice!) 2 months.

Proton radiation differs from the more commonly used photon radiation; proton radiation is focused to a spot and does not cause damage to surrounding tissues.  It is commonly now being used to treat brain cancer and other localized tumors.

Each treatment day I received 15 to 20 seconds of proton radiation administered thru each hip.  I felt no pain and after 38 treatments had only a slight 1-inch, sun-tan like spot on each hip.  During their treatment time, many patients were working 40-hour weeks while others regularly played 18 holes of golf!  The lack of fatigue was evident since one could not differentiate between those patients receiving their first treatment or their 38^th; they all felt fine!  Personally, I got up at 5:30 am and fished an hour before getting ready to go to my 10:30 am treatment.

At an informal completion (victory) ceremony and celebration (where the patient got to hit a big, noisy gong) each patient had the opportunity to say goodbye to the staff and his fellow, remaining for treatment, friends.  Cookies, cake, fruit or other goodies were commonly provided by the happy, patients and their family members after the completion ceremony.

A very informative book has been written by Robert J. Marckini, a patient treated 5 or 6 years ago.  The book title is “You Can Beat Prostate Cancer and You Don’t Need Surgery To Do It.”

Proton Radiation Centers are located in the following five states CA, FL, IN, MA and TX with three new ones being built in OK.  In a recent call to M.D. Anderson I was informed that by adding an additional proton radiation physician their current waiting list time is now only approximately 3-4 weeks! Most costs are covered by Medicare + supplemental insurance.

PLEASE DON’T HESITATE TO CONTACT ME AT tlavy[at]uark[dot]edu OR BY COMMENTING HERE IF YOU OR YOUR FRIENDS HAVE JUST BEEN DIAGNOSED WITH PROSTATE CANCER – YOUR UROLOGIST MAY NOT TELL YOU ABOUT PROTON THERAPY!   OVER THE PAST 15 YEARS THOUSANDS HAVE BEEN  SUCCESSFULLY  TREATED USING PROTON THERAPY.    I BELIEVE M.D. ANDERSON IS THE NUMBER ONE CANCER TREATMENT CENTER!

Feel free to send this information to anyone you choose.

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