Targeted Therapies: What does it all mean?

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Carol Preston interviews Leukemia expert at ASCO 2015.

When my kids were little, I loved reading to them Arnold Lobel’s Frog and Toad books including “The Corner” in Frog and Toad All Year. In it, Frog assures Toad on a cold, rainy day that spring is just around the corner. Frog says that when he was younger, on a similar cold, rainy day, he searched for spring around many corners until he eventually found it-sunshine and flowers-around the corner of his house.

And so it is with us cancer patients, constantly peering around every corner for the still elusive cure. Researchers at ASCO 2015 offered the most encouraging, hopeful news yet that we won’t have to look around the corner much longer.

Or will we?

Cancer is a tricky disease, in fact many tricky diseases, constantly morphing and exploiting loopholes to outwit us. The buzzwords at this year’s annual meeting in Chicago included “immunotherapy,” combination therapy and “biomarkers.” Immunotherapy has become the fourth arm to battle cancer, after surgery, chemotherapy and radiation. On the upside, scientists are making great strides to develop ways for the body’s immune system to fight the cancer. These are called checkpoint inhibitors. Inhibitors basically release the brakes in cells to allow our immune systems to charge and attack the bad guys, e.g. cancer cells. And since the cancer is being attacked at a molecular level, this should work for everyone. But it doesn’t. And that has proved vexing to researchers. Every specialist with whom PEN spoke at ASCO – from melanoma to lung and prostate cancer to colorectal disease – acknowledges that they don’t yet know why the inhibitors aren’t working for all of us.

That’s where the biomarkers come in. Researchers are working to identify specific markers on an individual’s cell to determine if a specific anti-PD1 or

PD-L1 inhibitor will work on a patient. Or why it won’t work.

For my cancer Chronic Lymphocytic Leukemia, CLL, combination therapy made headline news at ASCO. Through clinical trials, scientists have found that combining a checkpoint inhibitor, Ibrutinib, with a standard chemotherapy called bendamustine along with the monoclonal antibody Rituxan yielded an 80% response rate. That’s a “wow,” but it still isn’t 100%. What is it about the 20% that their bodies resisted the combo therapy?

Maybe the key to unlock the mystery lies with genetics. On the last day of the conference, ASCO announced a joint effort with the NCI, National Cancer Institute, to conduct basket trials. These trials group patients together with specific genetic mutations in a patient’s tumor rather than the location of the tumor. So a prostate cancer patient may achieve complete remission or, dare we say, cure by being treated with a drug developed for breast cancer because of the same genetic mutation found in both.

Will that be the magic bullet that cures cancer? I am optimistic that the answer is just around the corner.

An Upbeat and Energetic Cancer Conference? Really? You Bet!!!

   LLS Rocky Mountain Chapter conference

(Editor’s Note: The author of this post, Bill Slatkin, was one of the participants of Patient Empowerment Network’s Patient Cafe™ March session for CLL patients.)

About as upbeat and energized as any of the 50 or more conferences I’ve attended over the years.

That was my impression when I first got a sense of the vibe at the Fifth Annual Conference of the Rocky Mountain Chapter of the Leukemia/Lymphoma Society in Denver, April 11.

That feeling stayed with me, watching people chatting amicably, somehow sharing, with absolute strangers, details of their medical lives they probably don’t discuss with close friends and relatives. It was as if we are some kind of family brought together because of something important we all have in common.

Rocky Mountain Chapter of LLSWell, we do have something important in common, dammit. We’ve all been given terrible, frightening news–news that’s literally a matter of life and death. So what’s with the upbeat moods? People smiling, even laughing. A community of survivors and their loved ones, glad to mingle and meet, mostly talking about things that belong to the celebrating-the-being-alive side of life—long-term connections, expanding families, happy events–not the other side: the one about the awareness we are quite possibly being stalked by the Grim Reaper.

The mood was every bit as elevated in that hall as the pulse I’ve experienced at conferences attended by people with shared business, social or other interests. But here, in Denver, we were not getting excited about new technologies or innovative efforts to protect our environment, or the challenges represented by dramatic changes in the publishing industry. The topic was Cancer. And somehow the positive effect of this chance to come together was more powerful than the sum of our individual anxieties about our relationships with the disease.

While getting accustomed to that irony, I also noticed how frequently speakers and attendees Rocky Mountain Chapter LLS conferencewere using that word, “cancer,” and uttering it as casually as if they were talking about a “computer” at a database management conference.

Cancer. The word was being used without a trace of emotional content. (And the word “terminal” was used in a matter-of-fact way, sounding no more ominous than when it’s uttered with the word “computer” in front.)

Though used in a matter-of-fact way all day, it is, after all, the “C” word. It’s the word that–when we first heard it in reference to our selves, or a loved one–marked a significant, life-changing moment for most every person attending the conference. The moment each of us found out that cancer was touching us is a moment that each of us remembers in our own way, and that none of us ever will forget.

Rocky Mountain Chapter of LLSAsk someone the names and ages of her grand children, or the names and positions of the key players on his favorite sports team. You’ll get a fairly complete answer after some hesitancy and head scratching; after the individual has had time to mine the brain for the information. Now ask the same person about the moment he or she learned they or a loved one has cancer. It may have happened long ago, but the time and place the diagnosis was delivered aren’t facts buried deep in the archives of the memory along with everything else that happened back then. No. That information is right there, top of the mind, instantly available.

One compelling story we heard came from the keynote speaker, Ethan Zohn. Ethan’s claim to fame is winning a million bucks by outlasting other people in a televised competition called “Survivor—Africa.” I think the 400 or so attendees choked up along with Ethan when he described how he felt when learning the bone marrow transplant he’d received, after other treatments proved ineffective, had not done the trick. He said he’d experienced the medical procedure as more difficult than his days in Kenya when he was lost in an unfamiliar, frightening wilderness with little to eat and drink. The transplant was the most difficult experience of his life. In the end, it failed.

Ethan went on to talk about the following effort—a second transplant, this time with bone Rocky Mountain Chapter LLS conferencemarrow donated by his brother. He explained what he does to manage the worry that this attempt might also prove ineffective. This fear can be a constant companion. But for today, he is alive and reminding himself to celebrate his aliveness. And on those days of being alive when the clouds of doubt block the light of his hopeful optimism, Ethan thinks about that worry, and he commits the details to writing. All of the slips of paper he has filled with his anxious thoughts about “what will I do if…?” go into his “worry box.” Should the day come when what he’s worried about becomes his reality, he plans to open the box and read its contents. Only then, only if it happens, will he allow his mind to entertain the questions about what to do next. Meanwhile, there are his experiences of joy and satisfaction using his story and his compassion to bring comfort to people who are suffering. And to share the spirit of hope.

His tone changed when he pointed out he was glad he’d done well in a show called “Survivor,” rather than the one called the “Walking Dead.”

Who could ask for a better keynote speaker? He’s a charming television personality who has dedicated his newly-awarded money and his energy to help people find their strength and their courage as they face this most daunting of life’s challenges. Ethan said he attributed his motivation to this motto: “Never let a crisis go to waste.”

His warm, humorous, enthusiastic delivery further elevated our level of optimistic energy. It felt as if most of the people in attendance were carrying around with us– in addition to the written materials we were handed–that positive mood. And a hopeful attitude, in spite of some of the frightening survival statistics we heard about from various speakers in the large ballroom and the breakout sessions in Denver’s Crown Plaza (Airport) Hotel.

Here are some of the things I learned in those sessions.

  1. Similar genetic markers: Diseases as varied as lung, ovarian, blood and breast cancer, though they differ in the form they take and the places in the body where they appear, often have remarkable similarities on a molecular level. That’s exciting news in the way it meshes with the strategy of using targeted therapies. Until not too long ago, oncologist threw every drug that might prove beneficial at a case of, say, lung cancer. And then they, along with their patients, would hope for the best. All were happy and relieved if the cancer appeared to be defeated. But they also knew the disease has a nasty habit of reoccurring, and in a different form that is resistant to whatever treatment beat the disease in the first battle. There was little understanding of what might work, and when, why and how it might come back. The scientific explanation behind remission or relapse contained a few good ideas and a lot of uncertainty.The current approach to treatment is less like using a canon as the go-to weapon in every battle simply because it’s the only weapon you have. As they learn what they want to attack, and how to kill it, clinical researchers are creating formulations with clearly defined missions and specific enemies. As they devise cancer treatment protocols, oncologists use what they know about the makeup of particular cancer cells wherever those cells might be attacking the patient’s body. And they are combining drugs, using multiple weapons ready to destroy the cancer they find today, and ready to keep combatting the disease with different chemical tools as the cells morph into different forms, attempting to avoid destruction and to complete their deadly work. Figures tracking recoveries and longevity are showing positive results of this strategy in many forms of cancer.
  2. Communicating with your doctor: Some 86% of the doctors recently polled, reported good relationships with their patients, while only 20% of those patients agreed. The presenters, Jeffrey Matous, MD and nurse practitioner Megan Anderson, who work together at the Colorado Blood Cancer Institute, discussed how this problem might be solved. They advocate that patients become better prepared (bring a list of concerns to discuss, then take notes or get an audio recording of what transpired.) And they stress that many doctors should make more of an effort to listen. They cited a quote by a speaker (Terry Cenala) who told doctors at an American Academy of Orthopedic Surgeons, meeting: “Patients will never care how much you know until they know how much you care.”
  3. Complimentary alternative medicine: Healing occurs most effectively when the body is understood as intimately connected to—not separate from – a person’s emotions, mind and spirit. Discussing this topic, the presenters emphasized that a patient can expect a better outcome when working “in partnership” with the medical professionals, rather than being a passive recipient of whatever treatment the doctor or other practitioner chooses to provide. Offering their ideas, discoveries and insights were Fred Grover, Jr, MD, a Denver family physician whose website, RevolutionaryMD, features a range of topics related to integrative medicine; Sandy Priester, MBA, representing LifeSpark Cancer Resources, who discussed the benefits of the Reiki treatment and other healing methods; and Xiaorong Ding, PhD, speaking about her work at the Center for Traditional Chinese Medicine
  4. Clinical Trials: Steady progress is being made in this area as professionals become more sophisticated about targeting therapies to gene-specific diseases. And new methods of assigning patients to the groups within a study are increasing the numbers of trial subjects who are likely to be selected for the protocol proving to be the most successful. Dax Kurbegov, MD, representing the National Oncology Service Line at Catholic Health Initiatives, led up to this discussion with a fascinating history of what we now call clinical trials. In perhaps the earliest clinical trial, a 1747 experiment involving a crew of sailors, two crew members were given oranges with their meals, and rode out the voyage disease free. Meanwhile, their shipmates, who had received extra helpings of meat and other food items, but no citrus, were falling ill. Thanks to his cleverly planned experiment, Dr. John Lind discovered a way to prevent scurvy, the disease that was felling one ship’s crew after another.

At the conclusion of our final breakout session, I learned how this conference is unlike many other conferences I’ve attended. Suzanne (my wife) and I happily gave up our badges to a member of the staff that organized this event, and we headed for the door. There was no desire to continue conversations we’d had with people we’d met. We didn’t want to exchange business cards. And there was no “after conference” party to attend. That was enough cancer for one day. We were glad we’d attended and happy to leave.

Bill Slatkin talks during the Patient Cafe™ session in March

Bill Slatkin talks during the Patient Cafe™ session in March

As Suzanne and I walked across the parking lot toward our car, it occurred to me that I somehow felt better about my battle with this disease. And it was not just because of new information. I had met and observed a lot of folks bravely facing what I have to face. And I’d been exposed to some very bright medical professionals who are dedicated to helping me and all the other people who, in the occasional moments of despair, wonder why our bodies have turned against us.

All of these experiences: information, connections with fellow survivors, the positive and encouraging attitudes of the professionals I encountered, help me to cultivate a spirit of hope. And I think cultivating hope is an important part of my campaign to become healthy again.

Update on Melanoma Town Meeting for Patients Live Streamed!

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Update on Melanoma: Today’s Research, Tomorrow’s Medicine was the title of the Patient Empowerment Network town meeting for melanoma patients, families and caregivers.

This meeting took place in Phoenix, AZ on Saturday, March 28th. It was live streamed (which is what I did, from my home in Charlottesville, Virginia!) and Carol Preston was a great designated host for the online audience.

The Expert Panel

The Expert Panel

The panel of experts (Dr Wong from USC Norris Comprehensive Cancer Center, Dr Patel from MD Anderson, and Dr Gimbel from Banner/MD Anderson) first discussed the disease of melanoma, its biology and the various treatments possible, including chemotherapy, biochemotherapy, targeted therapies and immuno-therapies.

All doctors agreed that there has been a vast amount of progress in melanoma. What was true yesterday is not true today. Melanoma demands a team approach of possible surgery, radiation, and the various medical therapies. And of course, all patients are different and react differently. Patients have to find the right doctor and the right treatment.Screen Shot 2015-03-28 at 1.24.43 PM

And a call to action from all doctors: melanoma is increasing. In the US, one person every hour dies from melanoma. And this number is increasing. Tell your friends and your peers. Protect your children. And everyone should have their skin checked yearly by a dermatologist.

The panel discussed clinical trials at length. All agreed that trials were a great way for patients to get the latest treatment, but they were different to find and to navigate. “There is work to be done here,” Dr Patel said. Patients should use their doctor, their provider, Patient Advocacy Groups and online sites to find clinical trials that could benefit them.

TJ Sharp and Martha Bishop, both melanoma survivors, joined the panel and spoke about their experience with clinical trials. After several attempts, they both found a clinical trial that was working for them. They are both doing well. They both spoke about their journey, how they had to really research to find the best doctor and the best treatment for them. They emphasized that patients need to be persistent and keep asking questions and finding answers. They have to look for information, understand their disease and make a conscious effort to educate and empower themselves.

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Carol Preston interviews Dr Wong

During the breakout sessions, Carol Preston interviewed both patient panelists and doctor panelists, often soliciting questions from the online audience.

In the afternoon, Rena Szabo, a psychologist at Banner/MD Anderson joined the panel and lifestyle issues were discussed. The importance of leading a balanced lifestyle and having a good support system were emphasized. TJ and Martha agreed that family, faith and hope played a large part in their cancer journey. Living each day at a time was how they got through the early days of the cancer diagnosis. Rena talked about the mind/body connection and how important it was to have a good mental attitude and good social and emotional health while dealing with cancer.

The meeting ended with a Q&A session with questions from the live audience and also from the online viewers.

Click here to see the slides from this event presentation.

Be sure and check back with us on the Update on Melanoma page to view videos from this meeting. Videos will be posted as they are edited.


Hope Summit LIVE – A Powerful Event for Powerful Patients

Hope Summit LIVE about to start!

Hope Summit LIVE about to start!

Over 200 patients, family members and care partners attended the Hope Summit LIVE town meeting for cancer patients last Saturday at Moffitt Cancer Center in Tampa, Florida. The meeting kicked off with a welcome from Andrew Schorr, Katie Brown from LUNGevity, and Randy Broad, a PEN board member and 7 year lung cancer survivor.

Medical oncologists, Drs. Carbone and Antonia took their place on the panel and talked about the nature of cancer and lung cancer specifically.

Andrew Schorr, Dr Scott Antonia and Dr David Carbone

Andrew Schorr, Dr Scott Antonia and Dr David Carbone

Dr. Antonia described the different types and stages of lung cancer. He explained how personalized treatment can help those with genetic mutations. Genetic testing is important for anyone that is at risk.

Small cell lung cancer is inside or outside of the chest and has usually spread to the lymph nodes. This cancer usually responds to chemotherapy, but immunotherapy will most likely have an important role in treating this disease as well.

Dr. Carbone explained that all treatments are useful tools and that no one therapy should be thought of as the “best”. Often, treatments are combined. It is really up to the doctor and medical team to decide which tool to use at what point in the disease process.

Dr. Carbone talked about numerous side effects and explained that there are many drugs now to help with side effects and that patients should definitely call their doctor or medical team to report any side effects so that they can be treated. “The worst thing you can do is to sit at home alone and just suffer”, he said.

Lung cancer patients Tony Benchina and Pam Griffith then joined the panel and the topic of clinical trials was raised. The panel agreed.

The audience listens

The audience listens

that clinical trials may represent the best treatment available. It is extremely important to address the issue of clinical trials with your medical team.

Pam told her story about being diagnosed with stage III lung cancer and being treated with surgery, chemo and radiation that was not at all working. The cancer had spread to her bones, both lungs and her adrenal glands. Dr. Antonia placed Pam in a clinical trial for OPDIVO (Nivolumab). The tumors started to shrink and Pam feels as though her life has been given back to her.

Dr. Antonia cautioned that although these drugs are exciting, not everyone benefits from them. Every patient has a different response and some stay in response but others don’t.

Tony told his story about his diagnosis of non small cell lung cancer and his subsequent treatment at Moffitt Cancer Center. Dr. Antonia treated Tony with standard chemo and Tony responded. Tony then enrolled in a clinical trial for nivolumab. His tumor shrunk but Tony developed auto-immune hepatitis and he had to discontinue the medication. He then went into another clinical trial for crazotinib. He became very ill and couldn’t leave his bed. He then enrolled in another clinical trial with an ELK inhibitor. The results have been phenomenal and Tony’s quality of life has vastly improved. He now goes to the gym 5 times a week and feels great.

The Panelists

The Panelists

Katie BROWNfrom LUNGevity, a patient navigator, Cynthia Shimizu, a social worker cancer specialist, and Sam Vafadar, a physician assistant, then joined the panel. The panel discussed issues of Living Well With Lung Cancer such as family dynamics, quality of life, career decisions, wishes, desires, goals and values. Cynthia stressed the importance of asking questions and involving your family and your medical team in shared decision-making. Katie talked about online support groups and the importance of asking for and looking for support if you need it. Katie mentioned also that LUNGevity talks to many cancer patients about many different issues and that they are there to answer questions and help with issues involving living with and coping with lung cancer.

Carol Preston, a cancer patient herself and the online host, then posed a question from the live streaming audience. “Are the phase I clinical trials effective and are they risky?” Dr. Antonia responded that patients can certainly benefit from Phase I clinical trials. These drugs have been studied and are really esteemed to be effective for patients. Talk to your doctor about this but don’t disregard trials because they are Phase I.

Dr. Carbone explained that there is an art to medicine. The art is to decide what treatment or what combination of treatments is best for any one patient.

The morning session concluded with Drs. Carbone and Antonia expressing their excitement about current and newly approved treatments for lung cancer and the hope that the disease would evolve into a chronic treatable condition in the near future.

The patient attendees then proceeded to the breakout sessions. Patients were color coded on their name badge into

One of the breakout sessions

One of the breakout sessions

newly diagnosed, diagnosed 1 year ago, diagnosed over 2 years ago and caregivers. In these breakouts, patients shared stories and thoughts about living with lung cancer. For some, this was the first time they had met another lung cancer patient. For many, this experience was an extremely important session of the meeting.

While the live audience shared stories during these breakout sessions, Carol Preston interviewed several patients, and

Carol Preston interviews Dr Scott Antonia

Carol Preston interviews Dr Scott Antonia

panelists including Drs. Carbone and Antonia exclusively for the live streaming audience.

After the break, the panel reconvened and continued the discussion of the all important topic of Living Well With Lung Cancer. Topics included communicating with the healthcare team, emotional and mental aspects of coping with lung cancer and survivorship in lung cancer. Family issues, workplace issues, fears, hopes were addressed. These emotional issues are different for everyone and everyone has their own way of coping. In the words of Cynthia, the patient has to find their “new normal”. They have to learn how they can deal with their condition.

Questions were then solicited from the audience. One patient asked if diet or exercise or lifestyle really could make a difference. Dr. Antonia replied that patients can help themselves by keeping a positive attitude. Patients can really benefit by exercise. People who stay physically active do better with treatment. Patients should keep their weight stable. Patients’ families should NOT feel sorry for the patient. Support and a positive attitude is a much better option.

The issue of supplements was raised. Dr. Carbone stated that there has been no evidence of high dose supplements having a more positive outcome on lung cancer patients. Everyone agreed that patients should discuss all supplements or vitamins with their medical team.

As I circulated around the patients during the break sessions and the lunch break, the enthusiasm and warmth was palpable. Patients were sharing stories, thoughts, ideas and support. Everyone was talking or listening intently. Everywhere, smiles were seen and laughter was heard. This was a heartwarming event. Patients were connecting with each other and were becoming empowered, educated and hopefully becoming more confident in coping with their disease.

As patients walked back to the auditorium after the break, photos were taken of these “powerful patients”. They were all smiling.

Powerful Patients!

Powerful Patients!


Powerful Patients!

Powerful Patients!





Immuno-Oncology – The Challenging Road Ahead

Cancer Patients at a Town Meeting

Cancer Patients at a Town Meeting

Experts say there is tremendous promise in stimulating a patient’s own immune system to fight their cancer. A few new drugs are already on the market in this area for conditions like advanced melanoma and some subtypes of lung cancer. We have a town meeting discussing this for lung cancer on March 7th in Tampa and a melanoma one on March 28th in Phoenix. In blood cancers, hematologists also see great promise for this approach as we heard from many at the recent American Society of Hematology meeting. And, earlier, Dr. Oliver Press spoke to me about it in lymphoma. But there’s a caution just now: even when  experts say they are “excited,” it can be a rough go for patients.

As you may know, as doctors are testing out a new approach like immuno-oncology, they conduct clinical trials. Many trials are designed for the sickest people where their other options have run out. I have a dear friend in Seattle in exactly that situation. He has diffuse large B-cell lymphoma, and there is a trial of chimeric antigen receptor T-cell (CART) for his condition. He hopes to start participating soon. But like other patients who benefited in chronic lymphocyttic leukemia (CLL), at this point, he is very very sick and debilitated from months of chemo and a stem cell transplant that didn’t last. Our prayer is that he will enter the trial, and miraculously his T cells can be marshaled to finally fight his cancer.

 This is nothing like taking a pill to fight a sinus infection. These days the patients in these trials are at very low points. Of course, the researchers are hoping to prove safety and effectiveness and see immuno-oncology approaches used much earlier  in the course of a disease for greater benefit. That often happens with new cancer approaches. But today—as immuno-oncology is being studied for a broader range of conditions—many of the patients are very sick, like my friend, and it is their last hope. In my friend’s case, he is now facing additional chemo, so he can qualify for the trial. The journey has been incredibly tough, and we need to be reminded of that.

 I am a big proponent of clinical trials. I believe participating in one in 2000 for CLL saved my life. Fortunately, that one was for previously untreated patients, so I was feeling pretty strong at the outset. But many other trials are for people who have tried everything else. I pray this new approach to cancer treatment works for them, and they can make a solid turn toward strength and better health. I believe immuno-oncology will work out, as it has already for some people with melanoma and lung cancer. And when it does, we will have to thank some very sick patients who faced a bumpy road to make progress real for the rest of us.

I welcome your comments.

Wishing you and your family the best of health!