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 ProtonPals Newsletter
Am I Cured? |
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Don't Forget
ProtonPals on FB
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The locations rotate among various restaurants in the Houston Medical Center area. Tell your ProtonPal friends about Joe's House to find housing in the Medical Center area. This link is also on the website and on MDACC website.
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Houston Rodeo Line Up
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2013 Dates: Tuesday, February 25 - Sunday, March 17, 2013
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Thursday February 31, 2013, HOUSTON, TX:
Greetings!
The rodeo (Houston Livestock Show and Rodeo) came to town and will continue for 2 more weeks. It's quite a spectacle and one of the largest in North America; plus it's for a good cause. The traffic around Fannin and the stadium area can be a bear and all the RV courts in the area are filled to capacity.
DePinho spoke on Tuesday Feb 19th to the Friends of Integrative Medicine where he reviewed his work on aging. His talk was video taped and should be available on the Anderson website in two to three weeks.
On Wednesday, February 13th, Dave gave a talk at the Beam News meeting where we had standing room only in the two large conference rooms. He reported on recent results from his follow up visits since he's been off of Lupron. Read the interview below and learn how he's managed the side effects from two years of hormone therapy. Part Two of Joe's interview with Dave will appear in next month's ProtonPals e newsletter.
Dave and I are working on reproducing video modules of topics covered in his February 13th talk. We will let everyone know when they are available on the Proton Pals' Website.
The problem of misdiagnosis is serious and we saw one case this past month. Tom, from Dallas, was not misdiagnosed by his doctor or urologist but by a misdiagnosis by pathology laboratory used by his urologist. That's why M.D. Anderson insists that you send your slides and the pathology report be redone by the Anderson laboratory.
I completed my treatment for urinary bother last week and in an interview with Dave we talked about how you can manage side effects that may visit you 3 -5 years after treatment. Of course the clock is ticking on all of us and aging will have effects on your function(s). A late breaking piece of news - Dr. Andrew Lee says if you're being treated for prostate cancer don't take supplements without discussing it with your doctor; and this morning I noticed that Dr.Charles E. Meyers of American Institute for Diseases of the Prostate (AIDP) says AVOID DHEA (dehydroepiandrosterone). DHEA is a hormone produced by your body's adrenal glands.We didn't have the time this month to explore this from our layman's point of view but wanted to alert you about a topic recently covered at American Society of Clinical Oncology (ASCO). In Gratitude,
Joe Landry
February 28, 2013 Houston, Texas 
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| Prostate Cancer Patients Report on Benefits of Proton Therapy |  Ninety-nine percent of proton therapy patients believe they made the best treatment decision for themselves.
Washington, DC, (February 11, 2013) - Ninety--nine percent of proton therapy patients believe they made the best treatment decision for themselves, according to a new data analysis of outcomes and satisfaction of prostate cancer patients. The survey released today is the most comprehensive of its kind to capture health--related quality of life measures for proton therapy, an advanced form of cancer treatment.
The National Association for Proton Therapy (NAPT) commissioned Dobson DaVanzo & Associates, LLC, an independent health economics and policy consulting firm to investigate outcomes and patient satisfaction associated with the use of proton therapy in treating prostate cancer. The Brotherhood of the Balloon, a group of about 6,400 men who received proton therapy, conducted the survey.
"What distinguishes this new report is that the data come from patients themselves, " said Leonard Arzt, executive director of NAPT. Close to 2,000 patients who were treated for prostate cancer with proton therapy from 1991 to 2010 completed the survey, which incorporated multiple patient--report instruments, including the standard for all prostate cancer reports, the Extended Cancer Index Composite (EPIC) , and examined satisfaction with care, quality of life, emotional and physical health limitations; and urinary, sexual, bladder, and bowel functioning. "What's also unique in this report is that men are reporting on their quality of life, including some very intimate details," Arzt, noted. "The data represent the kind of patient--based outcomes analysis that is highly valued by clinicians and is needed to inform decisions about treatment options. Meaningful data like this have been missing in prior research on proton therapy. The study is highly unusual in that it includes results from approximately one--fifth of all men receiving proton therapy for their cancer treatment." The study reaffirms the results seen from patients for the past two decades and supports the clinical evidence regarding the efficacy of proton therapy. In the study, "Prostate Cancer Patients Report on Benefits of Proton Therapy," patients report that proton therapy is a highly effective treatment for prostate cancer, as the targeted proton beams spare surrounding healthy tissue and minimize the typical side effects from standard photon beam radiation, including incontinence and impotence.
Read on for the Executive Summary
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| Dealing with Lupron (leuprolide) Part Two |
 | | Nurse Tai Ly and Dave Stevens |
Update on the Chief Lupron Legionnaire
Note: I first interviewed Dave Stevens back in March, 2011, soon after he completed his proton therapy. At the time, he was in the middle of the first year of his two year hormone therapy program. The text of that interview is on the Proton Pals website. Here's the link Coping with Lupron Part One
Dave finished his two years on Leuprolide on August 5, 2012, and we sat down to talk about his experiences since our initial interview and what it's been like going off hormone therapy.
Joe Landry: Your two years of Lupron were finished last August 5th. How long did it take for the Lupron to leave your system?
Dave Stevens: Dr. Lee told me that it would take about four to six weeks. Based on that, my system was Lupron-free by September 20th, the time of my 43rd wedding anniversary.
Joe: Have you had any changes since you got off Lupron?
Dave: Well, Dr. Lee says the longer you're on it, the longer it takes for the side effects to wear off, so he told me to expect between 18 months and two years to get rid of the side effects. While on Lupron, my testosterone was below 20, so he anticipated that it would take awhile for my testosterone to go back up to the 425 level it was at before I went on Lupron.
Joe: Is that what happened?
Dave: Not exactly. My first blood draw was in mid-October, and I was pretty surprised with the result. My PSA was less than 0.1 (which is what it was the whole time after my proton treatment while on Lupron.) But my testosterone was up to 325! And that was just from one month being off Lupron! Dr. Lee was pleasantly surprised.
Joe: Wow!
Dave: Yeah, well it gets better. A couple of days ago, February 19, 2013, I had another blood draw. This time, my PSA was 0.3, but my testosterone was 648. Considering my testosterone was 425 just before I got on Lupron over 2 years ago, this reading was way off the charts! Basically, it took a month for it to go from under 20 to 325, and then four months later, it was 648. It really blew me away!
Joe: At that rate, I'll bet it won't be long before you and Ruth start having children again!
Dave: Not me, I'm done with that! While things are pretty much back to normal in that department, don't forget that the protons have pretty well done a number on my prostate gland so really nothing else comes out of the prostate gland at all. Besides, I have two grandchildren.
Joe: What about the other Lupron side effects? Do you still have hot flashes? Has any of your energy come back?
Dave: For the past few months, the hair has been starting to grow back on my legs and arms. I haven't had any hot flashes for months, although I typically don't get them until the weather starts to get warm. I am still taking one bone pill once a week, because Lupron reduces your bone density. I am feeling a lot better, and I have gone on a sort of crash program to get rid of the flab that built up during Lupron. In mid-November, I weighed 204 but I am now down to about 186, so that's a drop of nearly 20 pounds in three months.
Joe: Excellent! What about exercise and diet?
Dave: Toward the end of the time I was on Lupron, Dr. Lee referred me to the Symptoms Management Group up in the main building at MD Anderson, and they referred me to the Integrative Medicine Group. Dr. Lopez and his staff at Integrative Medicine have been helping me a lot on diet and exercise. They have a lot of information on the type of diet that helps prevent cancer from recurring as well as the type of exercise I should be getting. I've been a little slow on the exercise front during the cold weather, but now that things are getting warmer, I will have a lot more opportunity to get outside and exercise.
Joe: Thanks Dave for this interview and for giving a total of ten, two hour talks to the patients at M.D. Anderson's Beam News Meetings. This is the kind of education you can't get anywhere else and your work has been invaluable for me and the rest of the Pals. For March's ProtonPals newsletter, I hope you can make time to tell us about your experience with the Symptom Management Department and the Integrative Medicine Program.
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| Pathology Mix Up Results in Unnecessary Surgery | Trust but Get a Second Opinion
An article in the Boston Globe describes pathology lab mix up where a patient had unnecessary surgery and another with an aggressive case of prostate cancer had his treatment delayed because the first pathology report reported no malignancy. J E Landry
"Patients give very little thought as to whether the information being given to them is accurate,'' he said. "They assume that if their doctor tells them it's accurate, it's accurate. But the reality is that the doctor is only giving them information and results from work done by the lab or the pathology department, so a mixup by the lab or pathologist could result in the patient not getting the proper treatment by the doctor.'' - Andrew C. Meyer, Jr.
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| Seek a Second Opinion |  Could Change Your Treatment Plan
Three weeks ago I met Tom a new and young patient at the M.D. Anderson Proton Center. We spoke at length over lunch afterward Dave Stevens' talk. He was in Houston to seek a second opinion and on that day he an imaging procedure called an endorectal MRI.
In Tom's case he had been under a urologist's care for several years and had a recent biopsy with a reported a Gleason 6 from a pathology laboratory in Pennsylvania. From the initial numbers you would think it was a small Gleason 6 as Dr, Myers calls it. When he sent his slides to M.D. Anderson's Pathology Lab the report came back with a Gleason 7, (3 + 4) after having a DRE he also had a palpable nodule. Reading prostate cancer slides takes a special skill for the pathologist and I understand from Dr. Lee that we have a top notch pathologist, Janet Bruner M.D. who runs the Anderson lab. Dr. Bruner is quoted as saying "New patients who have had biopsies before coming to M.D. Anderson are asked to send ahead or bring pathology slides with them. We provide extensive review of their slides and actually change the diagnosis for at least 10% of patients, either finding that don't have a malignancy or they may have a less severe disease that can be treated."
Bob Marckini writes in February's newsletter about how almost 2% of the pathology reports on the Gleason Score are in error. This is low but not insignificant and across the country it could result in 30,000 mistakes a year. In other tumor types, for the aggressive breast cancer patients having the HER2 gene is very serious and testing misses 8% of the cases.
This quote comes from a Breast Cancer site. "You can get a second opinion at any point during the cancer care process. At the very least, though, it's a good idea to seek one before starting treatment, because a second opinion can change the details of your diagnosis, suggest other treatment options, or even change the course of treatment entirely."
The forums are filled with recommendations for pathology labs where they will read your slides. I was diagnosed in Houston at Baylor Medical Center and got the same report from the M.D. Anderson pathology laboratory. |
| Bothered by Side Effects? |  Know the Location of Every Road Stop
Note: It's easy to address side effects while you're having Proton Therapy. You see your doctor every week, and many of us compare notes about side effects while we're in the dressing room awaiting our turn on the table.
What if you have NEVER had Lupron, but you still have side effects months or even years after you ring the gong? What is the best way to deal with those "late" side effects?
Joe Landry completed his Proton Therapy in 2007 and didn't have to have Lupron. However, he has had to deal with side effects in the five plus years since he finished Proton Therapy. Earlier this month, Dave Stevens sat down with him to share his experiences.
Dave Stevens:
You're coming up on your sixth anniversary on April 14, 2013. Your PSA has been less than 0.5 for pretty much the whole time, so it looks like you don't have a prostate cancer problem. However, you've had some side effects after Proton Therapy. What is it like to have a near zero PSA but bothersome side effects?
Joe Landry: Before I answer that, may I say at the outset that you are still a patient here at the Proton Center even if it has been months or years since you finished your treatments. Dr. Lee once told me he is my "doctor for life" when it comes to any after effects of proton treatments. So I am free to email or phone him or one of the nurses if I have side effects. That's true for all of us. If I had things to do over again, I would have emailed him immediately when a problem came up, instead of trying to handle it myself or going to my primary care doctor.
Dave: That's my experience as well. Our doctors have had over 2,000 prostate patients doing protons since the Proton Center opened.
Joe: And they've seen about everything. So if you take away anything from what I say today, remember that just because you have already rung the gong, they want you to keep in touch.
Dave: You mentioned a "breakthrough" that you recently had that cured a problem you had for years before you even did Proton Therapy. Let's begin with that.
Joe: Well, I've had problems with urinary urgency since a bout with kidney stones over 15 years ago. As I got older, the problem got worse. Proton radiation did not help things. They call it "urinary bother" for obvious reasons, and until recently, Flomax and I were close companions.
Anyway, last summer, on top of everything else, I got a bad urinary infection. Nothing seemed to get rid of it. I contacted Dr. Lee, who referred me to the Infection Control Center here at M.D. Anderson. Dr. Issam I. Raad, the Chairman of the Infectious Diseases group cured the infection with some industrial strength "bunker buster" antibiotics.
Dave: Okay, but you still had the urinary urgency problem ---
Joe: About a year before, Dr. Lee had put me in touch with Dr. Ricardo Gonzalez, a urologist, who specializes in Incontinence and Voiding Dysfunction, among other things.
Dave: I didn't know there was such a specialty.
Joe: Well, there is, and I tried a few medications that didn't solve my problem. Nothing seemed to work. Then, Dr. Gonzalez referred me to his outpatient clinic on Richmond where I had 6 weekly training treatments of what he calls Pelvic Floor Muscle Rehabilitation or Pelvic Floor Exercises. I'd say more women than men are taking that treatment based on my time in the waiting room.
Dave: This sounds like Kegel Exercise training ---
Joe: Yes, and it's a bit like what we went through with the balloon doing Proton Therapy, except you do this once a week instead of daily, and they measure your muscle strength in the rectal intra-cavity area with a probe hooked up to a computer. The second probe gives electrical stimulation for 15 minutes; to help you identify the correct muscles or re-educate the muscles. It's use of EMG Biofeedback for Training the Pelvic Floor.
Dave: Yikes! I think I would prefer water-boarding.
Joe: Nah, it didn't hurt a bit. Really, it didn't.
For my homework I was told to do these exercises three times a day. The exercises consist of tensing your pelvic floor muscles for 10 seconds and in releasing them for 10 seconds with 10 repetitions. Believe it or not, the referrals that Dr. Lee made solved my 15 year problem, and made all my "pit stops" a thing of the past.
Dave: Wait a minute, don't forget all the hard work you did. That takes some dedication to keep up with those exercises. Did you ever forget to do them?
Joe: Not after I discovered a couple of apps on my iPhone.
Dave: You're kidding --- Apps for Kegel Exercises?
Joe: Yep. The two best I found 1) Kegel Kat and 2) Kegel Camp. They will alert you three times a day to do your exercises. However, in using those apps, I learned early on to put my iPhone on vibrate when I wanted to exercise in public or during a meeting.
Dave: I'll bet you did! On that note ---
Joe: As I said before, if you have problems with side effects from Proton Therapy, don't be bashful about getting help from the Proton Center. And start there. Whether it's your doctor, Nurse Practitioner Tai Ly, or the other nurses, they're here to help you, even if it's been a few years since you rang that gong.
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| Keynote Speaker for Anderson Conference |  2011 Pulitzer Prize Winning Author
Hot News from Anderson Network.
Dr. Sid Mukherjee has accepted the Anderson Network's invitation to be the keynote speaker at the September 24-25th Anderson Network Cancer Survivorship Conference. Dr. Mukherjee is the author the prize winning book and #1 best seller in medical books, "The Emperor of All Maladies."
Here's one of the Amazon 5 star reviews. "The brilliance of this book is the effortlessness with which the author draws the reader into the world of cancer and keeps him there as a tourist or witness. Dr. Mukherjee's engaging style, precision of prose and overwhelming compassion imbue this work with an energy that carries the reader along a ride like none other.
Whether the reader is a basic scientist or sociologist, a patient or healthcare provider, a philosopher or philanderer, this book will appeal, entertain and educate.
A remarkable achievement."
Siddhartha Mukherjee is a cancer physician and researcher. He is an assistant professor of medicine at Columbia University and a staff cancer physician at Columbia University Medical Center. A Rhodes scholar, he graduated from Stanford University, University of Oxford, Harvard Medical School. He has published articles in Nature, The New England Journal of Medicine, The New York Times, and The New Republic. He lives in New York with his wife and daughters.
Note: Help ProtonPals and order your books here. The Kindle price is around $11.
The Emperor of All Maladies
by Siddhartha Mukherjee by Scribner
Kindle Edition ~ Release Date: 2010-11-16
List Price: $18.00
Buy Now
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About the ProtonPals Organization
Thanks for subscribing to the newsletter and using the ProtonPals website. We won't sell or give your addresses to anyone. You'll receive one or at most two mailings a month from us. If you're a new subscriber you may want to note that the past newsletters are archived back to May 2009. Newsletter Archives
We're a group who chose proton beam therapy to cure their cancer and were treated at University of Texas M.D. Anderson Proton Therapy Center in Houston, Texas. The "Pals" formed a network in order to:
Stay up to date with treatment cure resultsProvide support to others and Center activitiesBe informed on any side- effectsPromote 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
Support ProtonPals by letting us know how you're doing. That is so important to newly diagnosed men and their wives and partners. As a former patient we'd all welcome your help in getting the word out about proton radiation and how you're doing. Please donate using the Donate Icon below or mail a check made out to ProtonPals, Ltd.(we're a tax deductible non-profit) at my home address. Read more about it on the website How to Help - Giving
Sincerely,
Joe Landry, Founder
ProtonPals, Ltd.
ProtonPals, Ltd. is a 501 (c) (3) public charity incorporated in Texas.
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DISCLAIMERS ProtonPals is an exclusively patient-sponsored organization with no official relationship with or support by The University of Texas M. D. Anderson Cancer Center or the M.D. Anderson Proton Therapy Center. ProtonPals is simply an information sharing network of patients. ProtonPals hopes to inform, encourage and help patients through shared knowledge. Members are not doctors so more serious concerns should be directed directly to your doctor. ProtonPals also desires to promote the M. D. Anderson Proton Therapy Center as for virtually everyone it has been a very positive if not life saving experience. The ProtonPals web-site, commonly known as the ProtonPals.net weblog, will contain hypertext links to information created and maintained by other public and private organizations. These links are provided for your convenience. ProtonPals does not control or guarantee the accuracy, relevance, timeliness or completeness of this outside information. Further the inclusion of these links to particular items in hypertext are not intended to reflect their importance, nor is it intended to endorse any of these views expressed or products or services offered on these outside sites, or the organization sponsoring the sites.
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