Undetectable for Another Quarter But…

…the prospect of my last Lupron injection is a mixed bag.

 

 

I corresponded with my oncologist on Friday and the good news is that my PSA levels remain undetectable (<0.1). I see him today and am scheduled to get my last three-month Lupron shot tomorrow. Then, starting August, we’ll start the wait and see process to evaluate what kind of success my aggressive treatment program has provided.

To be honest, even though I really do not like my life on Lupron, a small part of me is reluctant to give it up this summer.

While I have disliked greatly its side-effects, Lupron has provided, as one friend put it, an emotional and physical safety net. You see, Lupron is a palliative, not curative treatment. If radiation did not catch all the metastasized cells, at least Lupron will have been working as a damp blanket on the cancer camp fire. Lift the blanket and the embers will eventually flare as testosterone begins to rebuild over the next 12-18 months.

Two week ago while I was in the depths of an emotional spiral, my wife asked: “Are you afraid of coming off the Lupron? Is that part of what you are feeling?”

It took me just a few second to consider the question and say, “Bingo! I believe that’s part of it…” As I thought more about it, I must admit that the prospect of losing the safety net has been lurking in the wings of my emotional stage for the past few months.

Soon, I will have to jump into the waters of no active treatment and see how I do over the next 2-3 years. Luckily, my trusted oncologist will be on the sidelines as lifeguard, tracking my progress. It will be a prolonged sink or swim scenario. Naturally, I’d prefer to swim. But, should rising PSA start to pull be down, it’ll be back to the Lurponized wrestling mat for another round of competition. If that’s the case, it would probably be ongoing intermittent treatment until my body engineers a way to workaround ADT and other treatments need to be evaluated.

One way or another, I’ll have a clearer understanding of where I stand. As I have said all through this journey, clarity–any clarity–is a good thing.

Fellow Lupronites: Do You Spike?

I’m not talking flashy volley ball moves… I’m referring to more intense side effects following quarterly Lupron injections.

 

Interestingly, a few days before my last quarterly injection I had a conversation with my wife that went somthing like this…

Your shot is coming up. Are you ready for your spike?

My WHAT?

Your spike… you always go into a cycle of more intense reactions after your shot.

No I don’t…

Yes, you DO… I’ve seen it. Somewhere about ten days after the shot you seem to experience most–if not all of your reactions with much more intensity. The cycle lasts about a week to a week and a half or more…

REALLY…?

Fast forward to COUNTDOWN: Four… three… two… one… IMPLOSION!

Brother, was she ever right. This time I saw the clockwork in it all. Toward the end of last week, I was more emotional, more short tempered and intolerant, more fatigued and more prone to those palpitations, however milder they may now be due to my prescription for minimizing them. Those hot flashes were also back with more severity and frequency. Last night, after a day of chores around the house, I was flat on my back in bed with indiscriminate pain all over. Through tearful explanations of what I was experiencing, I had to admit it, I believe I was spiking!

I suppose when one is feeling mediocre to bad on a somewhat regular basis, there isn’t room for distinction in one’s observations. The experience all runs together as we count the days to being off the juice. For outside observers and caretakers, it’s clearly easier to see. They are the ones who have to duck and cover as we transform from Dr. Jeckyll to Mr. Hyde while needing more care and understanding.

Needless to say, I am looking forward to next week when this cycle will hopefully begin to wind down. But, now more cognizant of my own experience, I have to ask: Do any of my Lupronite brothers experience the same sort of reaction? It’s a question I’ll also be asking my oncologist in May.

On a lighter note, allow me to close by rephrasing Irving Berlin: May your days be merry and bright.  And may all your cycle spikes be slight…

Solid Progress in Combatting Bone Metastases

The prospect of bone metastases looms in the minds of patients with advanced disease. Now, new understanding and treatments for bone metastases deliver promise.

 

Each year, approximately 300,000 American patients suffer from bone metastases. These metastases contribute to significant morbidity and mortality in patients with advanced cancer. I, like many other patients, often wonder if i will find myself having to deal with this aspect of the disease.

At PCF’s 18th Annual Scientific Retreat last week, I was very encouraged to to see continued progress in better understanding the mechanisms of prostate cancer bone metastases and treating this painful and life-threatening manifestation of advanced disease. While attending the Retreat is always a bit like drinking from a fire hose, it is always an enlightening and impressive experience. Sitting in a room with more than 350 of the world’s brightest minds in cancer research can be every bit overwhelming as it is encouraging.

Since so many readers of this blog are currently having to deal with bone metastases, I decided to share what I learned about the advances being made in this area. (Several times each month, I hear from readers whose cancer has traveled to their bones.) In the first part of this report, you might be surprised to see where discovery can can take root… It’s a great example of PCF bringing people with unique expertise to contribute to our field. Dr. Taichman is a dentist-scientist whose discoveries are better informing better treatment strategies for prostate cancer.

Dr. Taichman has studied agents that coax invading prostate cancer cells from these bone niches and force them back into the blood stream where therapeutic agents can destroy them. These findings hold promising potential for the treatment of metastatic prostate cancer lesions by “kicking prostate cancer cells out of the hematopoietic stem cell nest” and letting the healthy normal blood stem cells have the nest back.

Alpharadin (radium-223 chloride) a promising new therapeutic—Oliver Sartor, MD, from Tulane University, provided Retreat attendees with an in-depth overview of the development of an exciting new therapeutic, Alpharadin (radium-223 chloride) which is about to be approved in Europe and the US. It is an investigational alpha-pharmaceutical (containing an alpha-particle-emitting nuclide) in development for cancer patients with bone metastases. This compound is “first in class” and is atomically like calcium. It mimics many of the behaviors of calcium including quick uptake into the bone, particularly where calcium is being deposited, in bone metastases.

In the Phase III clinical trials, Alpharadin improved overall survival by about 3 months for patients with castration-resistant prostate cancer and bone metastases without affecting patient’s bone marrow functions and forcing transfusions of platelets or red blood cells. Based on a recommendation by the Independent Data Monitoring Committee (IDMC), the clinical trial was stopped and patients on the placebo were given the option to receive the drug.

Alpharadin treatment is the first of its kind. By decaying radioactively in the bone metastatic site, Radium 223 fires off an alpha particle of energy that kills nearby prostate cancer cells. Alpharadin enters a patient’s bone and disperses small amounts of “short-range, high-energy” radiation, attacking the prostate cancer and preserving healthy cells surrounding the tumor. The Prostate Cancer Foundation was the first foundation to fund the proof of concept of radiopharmaceuticals at University of Texas MD Anderson Cancer Center through Dr. Christopher J. Logothetis using beta particles. When approved by regulatory agencies, Alpharadin will be the 5th new agent in a growing number of new drugs that have been approved for increasing survival of men with mCRPCA in the past 18 months. Alpharadin is intriguing as it could be combined with new immunotherapy approaches.

Studying XL184 (Cabozatinib) anticancer activity and its ability to shrink tumors in bone and soft tissue—PCF-funded investigators, Matthew Smith, MD, PhD, from the Massachusetts General Hospital Cancer Center and Phillip Febbo, MD, at UCSF, held a discussion on XL184.

Abnormal MET activation (a proto-oncogene that encodes a protein known as hepatocyte growth factor receptor–HGFR) in cancer correlates with poor prognosis, where aberrantly active MET triggers tumor growth, formation of new blood vessels (angiogenesis) that supply the tumor with nutrients, and cancer spread to other organs (metastasis). Vascular endothelial growth factor (VEGFR2) is a central regulator of the angiogenic process in tumor angiogenesis and the proliferation of tumor cells. In early clinical trials, Cabozantinib (XL184), a dual inhibitor of MET and VEGFR2, has shown promising results in shrinking metastatic tumors in both bone and soft tissue in patients with advanced prostate cancer.

While most cancer therapies to date have modest effects on bone metastases, tumor shrinkage is observed in a majority of patients who are given Cabozantinib: at week 12, there was a 74% control rate of tumors in prostate cancer patients: complete or partial bone scan resolution in 85% of PCa patients; and stabilization was achieved in 13% of PCa patients. These positive results were accompanied by pain relief and impressive bone scan improvement and were observed in castrate-resistant prostate cancer as well as breast cancer, melanoma, renal cell carcinoma, and thyroid cancer.

While studies of the most effective dosing continue, patient tolerance of Cabozantinib is consistent with other tyrosine kinase inhibitors and its manufacturer, Exelixis is planning to initiate its first pivotal trial in castrate-resistant prostate cancer by the end of this year. Dr. Febbo provided his perspective on the mechanism of action of XL184. He suggested that both receptor tyrosine kinases, c-Met and VEGF-R2, are critical in bone metastases and, when their signaling is blocked together—with a single drug that acts on both—a therapeutic effect is achieved. Neither c-MET nor VEGF-R2 were implicated as central in treating bone metastatic disease 24 months ago in prostate cancer research and both now are the focus of intensive research funded by PCF.

Xgeva update—In related news, the use of Xgeva (denosumab) to prevent bone deterioration and fracture in patients undergoing hormone therapy (ADT) was approved by the FDA just days prior to the start of the Scientific Retreat. Approval of a second indication of Xgeva—to actually delay or prevent metastases to the bone—is currently under review. The FDA has indicated that it will make an approval decision by April 2012. Dr. Smith, who has long focused on improving survivorship in men with advanced disease, has led Xgeva studies over the past few years.

Read the complete post-Retreat Advances with more highlights from the meeting.

 

 

PSA Screening

Sometimes you just have to throw yourself into the fray.

 

As I read today’s NYT article, Can Cancer Ever Be Ignored?, it began to happen once more. My pulse quickened. My blood pressure, already aided by my Luproinized reactions, began to rise. I’m lucky I didn’t start foaming at the mouth. Here was another article discussing Dr. Otis Brawley’s malignment of PSA screening. Once again, Brawley’s stance was tellling me that I should not have had my PSA screened.

I am sure most of you, like me, beg to differ.

Sometimes you just need to stop in your tracks and respond. Here is what I was roused to write on the NYT online comments section:

As a patient who went from being diagnosed with a fairly aggressive-prostate cancer (based on doubling time, percentage of involvement and Gleason scores) to being a patient with Stage 4 metastatic disease in just 7 weeks last year, I cannot imagine where I would be today had I missed one of my annual PSA screenings. THE PSA TEST SAVED MY LIFE. It will continue to save my life as we monitor my response to treatment and watch for signs of recurrence going forward.

In my travels within the prostate cancer community I have never had the opportunity to meet Dr. Brawley. If I did, I would look him in the eye and ask him to tell me or my family that I should not have had the PSA test.

True, the PSA test is imperfect. Too few understand that it is not a cancer test but rather the first step in the process of diagnosing prostate cancer or other medical problems within the
prostate.

The good news is that better, prostate-cancer-specific biomarkers and tests are on the horizon. We now also understand that there are 25+ genotypes of this disease, ranging from indolent, non-life-threatening varieties, to very aggressive types. Our rapidly growing knowledge base on this disease will soon enable us to better stratify patients so we can cure more and over-treat less.

With the advances being made, I believe that if one has to be diagnosed with prostate cancer, there is no better time to be a patient than today. I am grateful that I was able to proceed with the data provided by my annual PSA test rather than gamble with ignorance.

While Dr. Brawley is a respected physician, I believe his possible good intentions have gone astray. I suggest that America’s men would be better served if Dr. Brawley chose to bring clarity to the PSA issue, threw more support and funding toward research for better diagnostics and stopped inflaming the issue. America’s men–including the 33,000 who will die of this disease this year–and their families deserve better.

Dan Zenka, 53

Thank You, Raider Nation !

The first signs of blue on the gridiron are much appreciated by nearly 2.5 million American men and their their families.

At last, prostate cancer blue made it onto an NFL field this past Sunday at the home opening game of the Oakland Raiders. This inaugural splash of color stands as encouragement to advocates of this disease and will help initiate discussions for this cancer which is all too often little spoken of in families and amongst friends. I hope the entire Raiders organization is proud of the support they provided and understands that the team’s contributions to the awareness effort will indeed help save lives.

Prior to the presentation of the game ball by prostate cancer patients and survivors, we reached approximately 4,000 fans, providing them with information on prostate cancer and blue awareness wristbands. The response of those we spoke with at our booth and on the Oakland Coliseum grounds was overwhelmingly positive. Men and women were pleased to see the spotlight thrown onto this disease by an NFL franchise. Many commented that the entire league needs to get behind the effort.

We’d all like to see that!

Personally, I enjoyed the opportunity to visit many of the tailgate parties and to talk to men and their partners about the importance of early detection and treatment. In the course of a few hours, I met many supportive fans and was able to answer their prostate health questions. One fan, dressed in full Raider Nation regalia took it upon himself to begin passing out our blue wrist bands to his fellow citizens.

We had the support of Jim Otto, legendary Raider and a prostate cancer survivor. His public service announcement for Blue September and the Prostate Cancer Foundation also delivered an important message to fans in the coliseum.

I also have to extend a heartfelt round of thanks to our friends the Oakland firefighters, led by Brett More, who supported the cause, helped raise funds for research leading up to the game, and played a pivotal role in getting Oakland City Hall to light up blue for the entire week prior to the game. With their support and enthusiasm, I am sure we will continue to make headway for the cause.

Next month, we will be seeing a lot of pink on NFL fields promoting breast cancer awareness. All that pink is truly an inspiration. With the growing grassroots support of advocates across the country and the support of teams like the Raiders, I have no doubt that we will ultimately score a winning touchdown for more blue in support of prostate cancer awareness.

Please repeat after me… THANK YOU, RAI –DERS!

Beacon of Hope

We saw lots of blue this week and there’s more to come.

 

Sometimes a picture tells the story best, so I am posting these photos of Los Angeles and San Francisco City Halls as they went blue this week. They looked absolutely wonderful and I have to admit, I had an emotional moment as I stood outside looking up at LA’s City Hall last Friday evening.

Next stop… Oakland on Sunday, September 25 as The Raiders support prostate cancer awareness and prostate cancer patients/survivors will present the game ball at the season Home opener against the New York Jets.

What Happens in LA, Doesn’t Stay in LA

Turning the city blue has spurred a good case of City Hall Envy.

 

It’s been a gratifying week watching Los Angeles turn blue this week. The light towers at LAX look great. Santa Monica is awash in blue. This morning, I had the privilege of commenting before the LA City Council in advance of tonight’s event to light City Hall blue for the next three nights. I told them: “For the next three nights, City Hall with shine as a reminder to Angeleno men and their families that they need to focus on their prostate health. For patients, caretakers and their families, it will be a beacon of hope and assurance that we are making important progress so we can someday soon cure more and overtreat less.”

As a result of our activities in LA, we received a call from San Francisco City Hall–they too have decided to go blue this evening. Another City Council in Northern California is voting on Monday to turn blue for the coming week.

Saturday night, 100 women will be in Washington D.C. to shine blue flashlights in front of the White House. Sunday, a group of motorcyclists calling themselves the Pony Express will ride into D.C. to support prostate cancer awareness in front of the White House.

Effort by effort, our grass roots are spreading. We are being heard.

We must not let up!

Oackland firefighters save life more than one way

These brave men are also on a mission to save men from prostate cancer and protect families.

 

A few weeks ago, I received a call from Brett Moore, an Oakland firefighter. He informed me that Oakland firefighters and the Oakland Black Firefighters Association were committed to supporting PCF by promoting awareness for prostate cancer and raising funds for research. It seems Oakland firefighters are a microcosm of the prostate cancer problem in America. They have had many of their brothers diagnosed with the disease in the past few years. In the first half of 2010 alone, there were 11 new diagnoses in the department.

Brett and his colleagues are more than committed–they are going after this like it’s a four alarm blaze. In many ways, it is.

Now through September 25, they are selling special blue awareness t-shirts with the iconic blue ribbon and the Oakland fire department logo. They are selling tickets to the Raiders’ home opening game where Prostate Cancer awareness will be the theme of the day. They want to see every firefighter in attendance in one of their blue t-shirts. They are also hosting a firefighters tailgate event where we will be present passing out information and painting faces blue. Rusty Keyes, one of their own prostate cancer survivors, will join me in presenting the game ball.

I had the honor of meeting Brett, Rusty and several of their colleagues this Saturday evening at the Blue September launch event in Napa. I was struck by their conviction and enthusiasm for the cause. Their wives are also a force to be reckoned with when it comes to getting the word out about early detection and treatment.

I’ve been thinking about these guys ever since. With men like these, I know we will make progress. We will reach our goal of building a future without prostate cancer

The grass roots are looking nice and blue this year

Person by person, group by group, the prostate cancer blue movement appears to be taking root nicely.

 

Prostate cancer advocates who have long yearned to see more blue each September as part of National Prostate Cancer Awareness month should be encouraged this year. It appears that, through pure determination and stubbornness, we are making progress. Next week in Los Angeles, major landmarks such as LA City Hall, the Capitol Records Building, Los Angeles International Airport, The Hollywood Roosevelt Hotel and others are lighting up blue to broadcast the message of awareness and the importance of early detection and treatment. The same is happening in Atlanta and other cities.

It’s also happening porch by porch across America. For the second year in a row, men across our country are organizing into Blue Bulb Brigades in an effort to raise awareness of prostate cancer. Encouraged by Malecare, men are lighting blue bulbs every night this September to provoke conversations with their neighbors about early detection and treatment. Survivors are connecting on the organization’s online support groups and social networks, giving them the power to organize and create their own actions. Men are also learning from each other that prostate cancer is not a simple, easy to treat disease. African American men are dying from prostate cancer at nearly twice the rate as American men of European descent. The Blue Bulb Brigade is about getting men to ask their doctors about prostate cancer screening. According to Darryl Mittledorf at Malecare, The Blue Bulb Brigades energize men who might otherwise have never thought of themselves as cancer survivor activists.

Perhaps my favorite ray of light–actually rays of lights–is taking shape with three folks traveling from Indiana to Washington D.C. next week. They are being led by a school district employee, Ally Novotny. They are carrying with them 100 flashlights with blue filters. Some of the flashlights carry the names of survivors. Some memorialize the names loved ones who have lost their battles. Others simply carry the word RESEARCH. On Saturday, September 17, Ally and her team hope to recruit 100 women to rally in front of the White House and shine blue flashlights. They plan to hand out information during that afternoon and to shine their rays of hope from 7-10:00 pm.  It reminds me of that old adage… if you want something done right, do it yourself… They are receiving support from the Washington-based organization, Women Against Prostate Cancer.  Much to my relief, they are coordinating with the office of Congressman Pete Visclosky to ensure they do not violate any National Security protocols…

E pluribus unum–out of many, one. It’s nice to have visual markers to remind us that we are not alone.

Art with a Very Pointed Message

Whether it’s to entertain, inform, inspire or just soothe the frazzled soul, I’ve always believed that art should make a point. This one does.

Pedestrians in San Francisco will no doubt be taking notice of a new piece of public art on the promenade near the City’s Embarcadero overlooking San Francisco Bay. It’s bold and daring. It’s definitely direct. It’s message (one certainly hopes) is not meant to be taken sitting down. What’s more, it can’t help but get folks talking. And, when it comes to prostate cancer awareness, isn’t that the er… point?

According to artist Oliver Kreitman, an artist in residence at The Instructables Lab, ”This is a piece of public art designed to raise awareness of prostate cancer in a playful and slightly shocking manner. The hand is posed as if ready to perform a gentle digital rectal examination on an unsuspecting member of the public who accidentally sits down on it. ” (Gentle? Sorry, Oliver–the dimensions remind me of the old joke that a man should choose his primary care physician based on the size of his or her hands…)

Oliver goes on to remind his audience that,”Prostate cancer is a common and potentially very serious disease. In the USA, it’s the second most common cause of cancer-related death among men. Unfortunately, many people are reluctant to discuss it openly and even more reluctant to get tested for it. With this little installation, I’m hoping to at least get people thinking about it.”

I guarantee Oliver will be successful in getting folks both thinking AND talking about it!

No matter what what your art sensitivies and preferences are, I have to “hand” it to Oliver for taking a chance and putting himself on the line for building awareness!