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Am I Cured?

  Don't Forget


Join your Pals at the Wednesday night dinners. The locations rotate among various restaurants in Houston. See the schedule at the reception desk.

Housing in Houston
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. 
In This Issue
Featured Article
What happens to my PSA once treatment is over?
Key Questions
Prostate Test Could Save 700 Lives
Discussion Group User's Guide
It's All in your Genes
Did You Know?
You're the Most Important Person on your HCare Team
Quick Links
For Email Marketing you can trust
"Information about Proton Therapy You Don't Hear in the Gown Room or on the Net"
Dave Stevens' talks on prostate cancer, proton therapy and hormone effects will be held on regular rotation for each "class" at the Proton Therapy Center. The last talk was held on Thursday February 23 at 1:00 pm in the Proton Therapy Center large conference room.
One way to learn what he said is to follow the ProtnPals Discussion Board of the key teaser questions. 
Issue: #46February/2012
Not Your Father's Rodeo
Feb, 28 - March 18, 2012




Mica Collins, 3, from Washington, Texas tries out a pedal tractor at the Kids' Pedal Tractor Pull in the Kids Country area of the Houston Livestock Show and Rodeo on Feb. 28, 2012. (Melissa Phillip / Houston Chronicle) / HC
Rodeo Kids

Greetings!

The newsletter is running late for a few reasons and one is the preparation time I spent getting ready for an annual board meeting. We tend to hold our meetings when Ban travels to Houston for check ups and it was great seeing him again; plus he's to be congratulated on his test results.

We started in 2009 with three directors, Ban, Peter and me and what was significant for this meeting was being joined by the two newest members of our director team, Dave Stevens and Drew Cox. Their work has been very effective and has brought the ProtonPals to a new level of service to you. Drew in addition to joining the ProtonPal leadership team also joined the Anderson Volunteer Staff and the work he does every Wednesday is not directly attributable to the ProtonPals but close. He's also answering questions continually and fielding phone calls as part of the Pal to Pal service. Dave Stevens with his keen mind and lawyer's ability to research the medical journals has become an expert in this field of oncology and is at a knowledge level above small center oncologist in knowledge of this disease and treatment.This was unsolicited information given me by our oncologist adviser. Since he's completed his treatment and started working with us he has prepared and presented 5 talks over the past year to the prostate cancer patients at the Proton Center. The last talk was given on February 23rd to a full room of very interested patients, wives and families and lasted for 2 hours.

Over the past five years the prostate cancer patient population served by the ProtonPals has changed significantly. In the first classes of 2006 and 2007 many of us were Low Risk with Gleason Scores of 6 or 7. The Center was not accepting high risk patients in the early months. Some of us who are Intermediate and High risk were offered and are now being treated with hormone therapy (Lupron); and we're told that currently this is for the majority of total prostate patients in treatment. Some of us at five and six years out of treatment should keep in touch with our proton doctor because occasional recurrences have been known to start happening at that time. Some of us who were treated at other centers and have seen a recurrence are under going what's called a redo or salvage therapy.  

My point is that this is not unexpected and the focus of our coverage should change to meet the experience and questions change. Having Dave Stevens on board has brought this home as his article below shows.

Bottom Line - Considering a change in focus we'd like to take the information provided in Dave's talks and along with other patient and sources make it available to all. We'd like to use a Discussion Forum allowing us to be more productive using the ProtonPals forum along with 3 others that many of our members use.

We plan to do this by featuring one or two key questions each month in the newsletter and following it up with a discussion on the bulletin board.

This month's topic is about PSA readings after treatment with radiation and hormones. What sort of PSA readings indicate that your treatment has been successful? We've updated the  PSA Changes-Post Therapy one pager that's on the website and I'm including Dave's article for the month. 

We've had several requests for the slides to Dave's talks as well as inquiries about why don't we record the talks. Also, can we provide answers to the teaser questions posed by Dave when he promotes the meeting where he will talk. Some Pals would just love to be there to hear the talks but schedules and locations don't readily permit it. We don't have the resources to record and edit a two hour talk and you probably wouldn't find watching a 2 hour video very practical. You'd have to be there to get to ask the question and get the benefit of the discussions. 

So the key word is LEVERAGE. We think if you'll join the forum we've put in place and ask your question there, we and others will be able to read the question and answer the questions, along with comments by other members.

Discussions on this forum or bulletin board are well organized into topics and the writing placed in those folders is persistent, that is, it won't scroll down as the next comments are made. You'll be able to find it with a search and you can find what some mentor or patient said months or years ago.

Please support our efforts by going there and using the forum and making suggestions as to how to make it better. For example I got a recent request for a forum to discuss housing in Houston, and that is one of the categories provided.

Last week a couple sought me out after the meeting to tell me how valuable the ProtonPals organization and website had been for them. For their particular region of a neighboring state, they were not exposed to this mode of treatment had no idea this was available. They found the Proton Center through the ProtonPals using the Internet and read your journeys and anecdotes. They thank you. 

In Gratitude,
Joe Landry


 
What Happens to My PSA Once Proton Therapy is Over?
 What Warning Signs Should I be on the Lookout For?

If you have prostate cancer, your PSA score by itself is often not a very accurate indication of your condition before you begin your primary treatment, whether you have proton therapy, seeds or surgery. By contrast, PSA readings taken after your primary treatment are frequently highly indicative of whether your treatment is successful or not. That is why your doctor will want you to have your PSA taken every three months for a year or two after treatment.

 

What sort of PSA readings indicate that your treatment has been successful? Obviously, if you never had hormone therapy and your PSA reading is say, less than 1 ng/mL at your first three month checkup after treatment, that is very favorable. You're doing great if every one of your 3 month checkups produces a PSA of less than 1. But many, perhaps most of us do not have a PSA that drops right to the bottom after three months and stays there.

 

So what if your PSA does not drop very much at your first 3 month checkup? What if it actually goes up at your first check up? What if it bounces up after 3 months? Does that mean your proton therapy was a failure? Not necessarily.

 

Readings 3 months after treatment are rarely if ever conclusive. By itself, the first reading means very little. Instead, your doctor will look at your first three or four PSA readings to determine if there is a trend or a pattern of PSA readings. Now, let's take a look at a few patterns.

 

The first slide depicts the median patterns of a group of men following their treatments at the University of Florida proton center during the first two years. It comes from a study published online (in press) in 2010. PRO1 is the low risk group, PRO2 is the medium risk group and PRO3 is the high risk group. See how gradual the patterns are over the first two years after treatment ends (the line marked RT end). The exception is PRO3 the high risk group because they're put on hormone therapy at the end of their treatment, so their PSA drops much faster.

 

 

Just because your pattern is different from the first slide does not mean your treatment has failed. Quite the contrary. You can have a far different reading trend, but still have a favorable result. The second slide is taken from an Australian study published in 2009. It shows changes in readings over the course of one year. Note the big jump in the first 3 months from a PSA of 12 after treatment, up to 20 at the first reading. (So you think you've had it bad!) But then the next reading shows a drop to about 8, and then a gradual declining plateau. As long as the pattern drops, things are OK. So a big jump in the first couple of readings does not automatically mean your treatment failed, especially if a large drop follows. This slide shows a successful treatment so far.

  

The third slide shows changes in readings over nine years. Note that the first reading shows a drop from 12 only to 10 after the first post treatment reading. But then the PSA plunges to about 2 on the second reading. Between year 1 and year 2, the reading hits bottom, but then starts to go up, but never exceeding a PSA of about 2. By the middle of year 3 a plateau is reached, which stays consistent. Here again, we have a successful treatment.

 

Conclusions from Non-HT slides are summarized. Three take aways:

  

You don't need to lie awake the night before your first post treatment PSA reading worrying about what your PSA will be, or even before your second, third or fourth PSA reading. So stop worrying before each checkup!   

  1. Normally, a pattern does not develop overnight. It can take as long as two or three years.
  2. Plateau patterns are best.

Now for slides for those of you who are or have been on hormone therapy. Those show patients on short term hormone therapy (6 months or less.)   

 

 

The first HT slide shows a huge drop from a PSA of about 22 down to near zero for the first post-radiation treatment. This is a typical of what happens to your PSA when you start on Lupron. When you get off Lupron, your PSA bounces, but this one hardly bounced at all after ending Lupron. It's a flat and stable reading at a low PSA level. That is a pattern we like to see, particularly because of the near zero PSA reading on Lupron.    

 

 

This second Lupron slide shows a pattern like the first one, but there could be a couple of problem areas here. Notice that the bottom in the first year is a PSA of about 1. It's not near zero like the first slide. Second, you can see an upward PSA climb beginning in about year 5, which accelerates in year 7. If this patient is very old, much of the increase may be attributable to his age. If not, the increased PSA pattern may be a sign that there is some cancer that may be spreading. His proton doctor may well prescribe further treatment.

 

As with the non-HT slides, there are some take aways from these HT slides, too.

 

First, if you have HT before beginning protons or radiation, your chances of success are doubled if your PSA after HT is below a 0.5 reading, according to a 2010 abstract in a study done by our own Dr. Choi and Dr. Lee. (Remember that the patient on Lupron on the first slide bottomed out at about zero PSA, while the Lupron patient in the second slide bottomed out with a PSA of about 1; that relatively high bottom reading on Lupron is a clue of potential problems down the road for the man in the second slide.)

 

 

 

 

Two points to make on the HT slides. First, if you have HT before beginning protons or radiation, your chances of success are doubled if your PSA after HT is below a 0.5 reading, according to a study done by our own Dr. Choi and Dr. Lee which is summarized on the slide above. 

 

Second, once the HT is out of your system, then consider yourself like a non-HT patient and follow the results we've discussed above.

 

One final comment: Even if your pattern indicates possible problems, don't panic. Instead, discuss your situation with your proton doctor. The fact is that even if there are problems, the PSA gives a lead time of at least one year before symptoms start to show up. That is lots of time for your proton doctor to take action.

 

Good Luck!  

Dave Stevens 

 

 

Editor's Note:  If you want to discuss any of these charts or discuss a pattern that you have questions about, you may contact Dave directly but it would be most productive if you can use the Discussion Board located on our website at  ProtonPal/Legionnaire Discussion Group or http://protonpals.net/bbPress  That way others with similar concerns can learn from your questions.  

 

I wrote a good Users Guide to help you to get started with the Discussion Board, plus I will promise to serve as your technical support.  I'm not in Bangalore but in Houston. However I did hire a young graduate of a technical school from that country to integrate the discussion group with the ProtonPals website.   

 

 

Questions Where the Answers are Hard to Find
Teaser Questions Used to Promote Attendance to Dave's Talks

 

Whether you're currently a patient at the PTC or a Proton Center Alumnus, you're invited read this and start a discussion on the "new" ProtonPals Discussion Board. .

What happens to my PSA after Proton Therapy is over?

What warning signs should I be on the lookout for?

How can I tell if I am low risk, intermediate risk or high risk? And risk for what?

Are there any side effects from Proton Therapy after I've "rung the gong?"

Do the treatments continue to work after my 39 sessions are done?

Why is a Gleason score so important? What does it look like under a microscope?

What is the difference between a Gleason 7 (4+3) and a Gleason 7 (3+4)?

What's next after if the protons don't kill all the cancer? What are the stages?

What does it look like under a microscope when the protons kill cancer?

If Proton Therapy kills the cancer, why do some men have hormone therapy?

Doesn't the high dose radiation we get at the PTC make hormone therapy obsolete?

Since I've been on Lupron, I'm having ED, mood swings, hot flashes and I just feel like sitting in my recliner all day. Does this happen to anyone else?

 

Prostate Test Could Save  700 Lives a Year
 Australian Study Shows Longer Follow Up was Needed
 
You may recall that last October, the US Preventive Services Task Force recommended, in a draft report, that PSA testing be discouraged. The Proton Pals submitted comments to the Task Force asking the draft report be withdrawn. Among other things, we pointed out that the  recommendation recklessly ignored the favorable results of PSA testing on younger men or men with minimal comorbidity, as shown in a recent study. Our comments stated that the Task Force would do far more good by working with other groups to develop a risk stratification method of testing instead of discouraging PSA testing for all men. 
 
Yesterday, a news article published in Australia contradicted the American Task Force, and commented that PSA testing would save 700 lives in Australia each year. Here is the link: 
 
http://www.dailytelegraph.com.au/business/breaking-news/prostate-test-could-save-700-per-year/story-e6freuz0-1226286412156
             
 
We have heard nothing from the Task Force since last October, but hope that the Task Force will withdraw its recommendation to discourage PSA testing.

Editor: Remember when considering and projecting lives saved that the total population of Australia is 22 million, with 49.8% males. The United States on the other hand has a total population of 331 million and Texas 25 million. 

 

ProtonPals Discussion Group
More to be added here. Why is it helpful to have a discussion group  bbPress is a forum software to support
 
User's Guide
 I wrote a ten page (lots of graphics) Users Guide to help Dave and the Legionnaires navigate through the Discussion Group. It should help you to get started with the Discussion Board, plus I will promise to serve as your technical support.  I'm not in Bangalore but in Houston however I did hire a young graduate of a technical school from that country to integrate the discussion group with the ProtonPals website.

After reading this guide you should be able to:

  • Understand how the Proton Pals Discussion board is organized
  • Register to become a user of the ProtonPals Discussion Board
  • Start new topics, and make postings.
  • Add to the general knowledge by making comments on discussions that have been posted
  • Add CATEGORIES and FORUMS if you have administrator privileges. These priviledges will be allocated to discussion leaders and mentors.
You can download the User's Guide in PDF by linking here.
 ProtonPals Discussion Group Users Guide

 

How Your Genes Will Drive Personalized Medicine
 Andrew Schorr (an article from the PatientPower Blog)
Andrew Schorr at the Personalized Medicine World Conference
Andrew Schorr - PatientPower

This month I was honored to be the master of ceremonies at the Personalized Medicine World Conference in Silicon Valley, California. for the second time. About 850 scientists, venture capitalists and physicians attended and most all of them, have many more letters after their name for advanced degrees than I have! These smart folks have been building the technology and processes to enable all of us to receive preventive medicine and treatments that, when needed, are an exact match for our individual biology. Yes, we humans are largely the same, genetically speaking, but those subtle differences can make all the difference for our health risks, and for what type of disease we have when we develop one. 

Increasingly, as I heard at the conference, companies are developing very targeted drug therapies that are designed to be used on people who were positive on companion new, very specific tests. In other words, the FDA is now being asked to approve tests and medicines as a package. It makes sense: know if the medicine is right for a specific patient and then prescribe it. If it is not right, avoid the expense and the risk of serious side effects.

I had a message for these mostly techy folks: Partner with us patients right now - even if widespread genetic screening or analysis of a patient's illness is not ready for prime time. We want to know what's coming and we want to advocate for its use for us when it becomes available. Start supporting education about personalized medicine right now.

The technology folks are zooming in their progress. One speaker said they now can sequence a patient's entire genome in a day. Next year it will probably be much faster and much cheaper. But there's an obstacle: current clinical practice. Your doctor - in most cases - has had little or no training in applying genetic information to risk reduction or treatment. Will they adapt and if so, how fast? As for us patients, it is in our best interest to know our specific health risks and to demand current or experimental therapies that have the best chance for matching up with a genetic signature of a disease when one shows up on a test. We can drive personalized medicine at our local clinic.

Right now genetic sequencing is starting at university cancer clinics. That's the basis for melanoma patients with BRAF getting a new drug for that mutation; or lung cancer patients getting a new drug for the ALK mutation. This is just the beginning.

As a patient, I am cheering on the folks I met at the conference. Develop the computing power and genetic analysis, ever faster and cheaper. Make it irresistible for clinics. Educate doctors and patients as to what's significant. And push forward with the approval of new tests and companion drugs that can match up with specific patient types for a realization of true targeted, precision medicine.

So the news I bring you is that all this is possible if we can move the creaky battleship of healthcare delivery into the 21st century and if we, as consumers, demand, in genetic terms, the use of approaches that are right for us as individuals.

                                Wishing you and your family the best of health!

                               Andrew  


 

FACTOIDS ABOUT YOUR WEBSITE  EYEBALL TRAFFIC IS GROWING
From Our Traffic Log for February  

At our board meeting I reviewed how we have 962 active contacts on the newsletter email list and how the website traffic on the ProtonPals.net is growing.  We get 136 visits a day viewing 423 pages and generating 1140 hits. Some of the visits and the hits are automated and are not humans but the eyeball is large and growing.
Showing the growth from 2008 to 2012

A lot of traffic comes from M.D. Anderson having 4 links to our website but significant traffic comes from the search engines. For about a year now the site has been optimized for Google, Yahoo and Bing searches.  
  • The number of unique visitors to our website was 1828.
  • The number of visitors was 3965 with 2.16 visits per visitor.
  • Pages viewed were 12,294.
  • Viewed traffic was 1003.5 megabytes, topping over a gigabyte for the first time.   

Other factoids for February are

  • Visitors are coming from sixty four countries.
  • Turkey was second ranked behind the US in the number of visitors
  • Germany, China, Sweden, France, India and the Russian Federation followed in that order.  

  

 

Part of Your Success as a Patient
 You're the Most Important Part of Your Healthcare Team
Dr. Jonathan Oppenheimer well-known prostate cancer pathologist - Says that the pathology report is the most important part of your prostate cancer diagnosis in a video on Ask Dr. Myers.  Dr. Oppenheimer has "The Prostate Lab" with locations in Nashville, TN and San Francisco, CA. See his site at The Prostate Lab
  • Who was it performed by?
  • What is the Gleason score?
  • Do you have perineural involvement?  
  • Lymphatic invasion?
  • Is there extracapsular extension?
  • Is there seminal vesicle involvement? 
  • PSA score when biopsy was taken
  • Who was it performed by? Was it a specialist?
How To Get Better Treatment view the Ask Dr. Myers Video.


1. Retain a copy of your pathology report and read it. A careful reading of its contents will make you a better informed patient and better able to make rational treatment decisions with the aid of your urologist, surgeon or oncologist.

2.  Know your Gleason Score. The Gleason Score indicates the aggressiveness of the prostate tumor.

3.  Know how many cores were involved. Both sides? Or only one?

4.  Find out if there was cancer in the apex. If not, surgery is more likely to be successful.

5.  Ask your physician if there is High Grade disease, meaning a Gleason pattern or 4 or 5?

6.  Find out if there is any evidence of poor prognostic factors, such as intravascular invasion, extracapsular penetration or significant perineural involvement.



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. 

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 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

  • 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 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.