Even before the Human Genome Project blossomed with a map of all the genes in the body some genes had been identified as putting people at high risk for serious diseases such as breast and ovarian cancer. Actress Angelina Jolie is making news because she chose to have both breasts removed, [...]]]>

Photo credit: People.com

Even before the Human Genome Project blossomed with a map of all the genes in the body some genes had been identified as putting people at high risk for serious diseases such as breast and ovarian cancer. Actress Angelina Jolie is making news because she chose to have both breasts removed, with reconstruction with breast implants following. She made that aggressive cancer prevention choice because she was told a test result showed she carried the “breast and ovarian cancer genes: BRCA1 and BRACA2. Her mother died of breast cancer.

Breast removal in an otherwise healthy woman, and removal of the ovaries too, are major cancer prevention choices. But, when the genetic risk is there, it could be lifesaving and certainly lessens the fear of living with a ticking time bomb. Kudos to Ms. Jolie for going public with this.

It’s important to note that it is a minority of breast and ovarian cancers where a genetic cause has been identified. There may be other bad genetic predispositions at work, we just haven’t found them yet. Not long ago I hosted an audio interview program, “Genetic Testing for Breast and Ovarian Cancer Risk” with a gynecologic oncologist and her patient, who also decided to have preventive surgery. This discussion helps put the issue in perspective and explains the hard choices.

Angelina Jolie gets us thinking about cancer prevention, and she “took it to the max.” But people can also lower their risk of cancer in much less aggressive ways too. Being informed, and making the right choices for one’s personal situation, is always a good thing.

Wishing you and your family the best of health!

Andrew

At the same time medical science is making [...]]]> Time is limited, and time is money, right? Doctors never seem to have enough time. As our population ages, there are more people in need of care and with spiraling higher costs doctors are required to see more patients per day. There’s little time for chit chat.

At the same time medical science is making the practice and the treatment of serious health problems more complex. There are competing diagnostic tests, competing treatments, and many clinical trials. And empowered patients and family members want to have a consultation with their doctor, no longer accepting an “edict” telling them “this is what I am going to do.” Thankfully, people want to understand their situation and measure it against available options. Facilitating that is Patient Power’s mission.

If you think back, and as one healthcare administrator reminded me the other day, doctors used to hate it when patients asked questions. It slowed them down. They thought it showed a lack of respect. I am happy to report that in my interactions with leading medical experts, they are very open to questions and dialogue with patients like you and me. And they are making themselves very available today for our Patient Power team as we seek to interview them on video for an audience of patients worldwide. Several have agreed to be interviewed at the June meetings of the American Society of Clinical Oncology in Chicago and the European Hematology Association in Stockholm. While they share patients’ frustration that there is usually little time to have a full discussion in the exam room, and support explaining details and options to a wider audience on video and away from the crush and emotion of an office visit.

Dr. Claire Harrison

A great example is Patient Power’s recent series of interviews with Professor Claire Harrison, a myeloproliferative disease clinician and researcher from London. She spent 45 minutes with me giving detailed answers to questions many, many patients wish to ask about the latest research, the newest medicines, new ways of testing, what the future may hold and how soon. From my discussion with her in Madrid, when she graciously stepped out of a medical meeting with her peers, we have now edited six distinct video programs. Those are from among 18 we produced from that conference covering myelofibrosis, one of my personal diagnoses (the other is CLL), and polycythemia vera and essential thrombocythemia. Other world experts like Srdan Verstovsek from MD Anderson in Houston and Drs. Passamonti, Vannucchi, and Bacigalupo from Italy, and my own doctor in Spain, Cervantes, all took the time to be interviewed knowing it could reach many, many patients, they would never be able to speak with one-on-one. You can see them all together in our Myeloproliferative Disorders Center.

Medical researchers and clinicians are using the media like government officials (but maybe with more credibility), to reach a wider audience in a timely way. I have also found that they understand the difference between speaking to the general media, where most of the readers and viewers do not have the condition they treat or research, and a resource like Patient Power where we are a direct line to their patients, potential patients, potential clinical trial participants, and others worldwide affected by their condition. So they graciously give a lot of their time and we are all very appreciative.

By the way, your doctor and nurse may well be watching the same interviews with these experts. Patient Power’s content is viewed by, and shared by, medical staff members as well as patients. In fact, on one channel specifically for oncology professionals, Patient Power videos have had some 300,000 views and we are now the third most watched channel on Oncology Tube, one of our partners.

It’s thrilling to bring patients and caregivers current information, direct from top experts, on an ongoing basis. In the coming weeks you will see Patient Power focus more on some very specific conditions. That means some of the world renowned doctors we’ve interviewed in those conditions may become “regulars” on our videos. It’s good for you and, as noted, it’s good for them.

The experts are increasingly understanding we are all in this together around specific diagnoses and that modern communication 24/7 is our friend.

Wishing you and your family the best of health!

Andrew

The horror at the Boston Marathon finish line was felt around the world. I was shaken by the explosions in my home in Barcelona, where I now live, as I was a long-time marathoner. My son, Ari, is an elite marathon runner but opted not to run in [...]]]>

Photo Credit: John Tlumacki/The Boston Globe/AP

The horror at the Boston Marathon finish line was felt around the world. I was shaken by the explosions in my home in Barcelona, where I now live, as I was a long-time marathoner. My son, Ari, is an elite marathon runner but opted not to run in Boston this year. Had Ari been there he would have been with his 78-year-old Seattle running club team member, Bill Iffrig, of Lake Stevens, Wash. He’s the elderly gentlemen wearing the orange singlet in a photo that went viral showing him as he was blown down by the blast. Fortunately, he was not seriously hurt. But the incidents in Boston brought death to some families and serious, long-term injuries to others, and now the healing and recovery process is underway.

In this blog I have written many times about people with chronic illness. We’ve given advice about getting second opinions and taking control of your “journey” right from the start. But when there’s an explosion, or a shooting, or a terrible accident, like the Texas one at the fertilizer plant, there’s no planning. In an instant you or a loved one’s health status may be changed forever. Surgeries, medications, medical devices and equipment, doctor visits, and rehabilitation may be part of your life for many years if not for the rest of your life. Like those with cancer, you become part of the world of “survivors.”

Photo Credit: www.baa.org

We question a lot about our healthcare system: how much things cost, is there too much marketing, can we really trust what we are being told. But when there’s a sudden event as we’ve just seen, it brings out the best in healthcare professionals and we owe them a debt of thanks.

Those of us living with chronic illnesses or cancer are reminded of our bond with trauma victims who are plunged into a changed life in the medical system just like we were with our diagnosis. And like Bill Iffring, the 78-year-old runner, when knocked down most of us will do all we can to get back up and get back in the race.

I welcome your comments and pray for a strong recovery for those who were injured.

Wishing you and your family the best of health!

Andrew

This is a personal story from my own family that, I believe, speaks to all of us as we age, face challenges and, hopefully, overcome them. The story is about my father-in-law, Marty Taft, a resident of Los Angeles and now 82-years young. Like many his age he has had health “interruptions.” [...]]]>

Marty Taft

This is a personal story from my own family that, I believe, speaks to all of us as we age, face challenges and, hopefully, overcome them. The story is about my father-in-law, Marty Taft, a resident of Los Angeles and now 82-years young. Like many his age he has had health “interruptions.” One came 20 years ago when he had a heart attack. Later came a diagnosis of type 2 diabetes, like his father and brother. Fortunately, nothing stopped this former engineer as he was propelled into his senior years.

About ten years ago, Marty became interested in magic, so much so that he joined the Magic Castle in nearby Hollywood and became an associate member. Marty took delight in seeing the shows there of professional magicians and was thrilled by the amazing sleight of hand of magicians doing “close-up work” who could make things disappear.

Marty decided he wanted to do it too. He threw himself into it. One day he spotted a brief item in the Magic Castle newsletter. A member was looking for help performing free magic shows at area hospitals. Marty, still a novice, asked if he could watch and help. The magician, Hy Levy, welcomed him and let him perform a trick for the patients. Marty was hooked. He perfected his skills and became Hy’s regular partner. After a year, Marty passed the audition to become a Magician Member of the Magic Castle. They’ve been at it monthly now for years.

The other day I was in Los Angeles and accompanied Marty to his most recent performance. Hy couldn’t make it this time. These days the volunteer magicians perform for what could be considered a tough audience: men at a veteran’s hospital in a locked down mental health ward. As the activities coordinator unlocked door after door and ushered us into a group conference room I did not know what to expect. We found about 10 men of varying ages quietly waiting for us. Some seemed distracted and, I am sure, many were on some pretty heavy-duty medications. But there was a spark the moment Marty pulled out a deck of cards. The men leaned forward, some came closer. The first trick got them interested (“How did you do that?”), the next one won them over (“That’s amazing!”). Magic was the elixir for Marty and for them. Despite health issues faced by all concerned there was a childlike wonder that came into the room and, in a word, “fun.”

Photo courtesy of the Magic Castle

I got to thinking how simple magic tricks were wonderful medicine, for Marty, and for these hospitalized veterans. For years they have enabled Marty to give back and each performance brings delight to people who really need it.

As each of us gets through health challenges or just gets older, we may want to know if there’s some simple way we can give back to others. Marty has found his way. Patient after patient shook his hand and thanked him as the magic show ended and it’s clear Marty’s choice has made a lot of people happy.

Wishing you and your family the best of health,

Andrew

The human genome project has ushered in the age of “precision medicine.” Cancer centers around the [...]]]> It’s tough to be a cancer patient today. Not just because you have cancer, but because you have to do a lot of work to ensure you have knowledgeable doctors, the best care, and that you do your part.

The human genome project has ushered in the age of “precision medicine.” Cancer centers around the world are leveraging vastly cheaper approaches to analyzing the genetic profiles of a new patient’s cancer. At the same time upstart biotech firms have been developing an increased parade of “targeted therapies,” many of them in the form of expensive pills. The changes can be bewildering for doctors and they certainly are for patients who have the overlay of fear.

The other day I hosted a town meeting on behalf of MMORE (Multiple Myeloma Opportunities for Education and Research). It was held at MD Anderson Cancer Center in Houston and 200 patients and caregivers turned out. They heard from experts including myeloma mentor patients Paul Rabuck and Eunice Marks; Thomas Martin, M.D. from UCSF; and Robert Orlowski, M.D. and Brianna Garrison, Licensed Master Social Worker, both from MD Anderson. They also came to meet others with the same health concern. The clinical part of the discussion took more than an hour as the doctors took us through the vast changes in treatments, research and side effect management. The audience took copious notes.

The discussion will continue in support groups, social media, advocacy groups and on the Patient Power site. The good news is there is lots to talk about and clearly, with some cancers – unfortunately, not all – people are living longer and better. But it takes work and some sophistication to cut through the clutter of old information and wrong or misleading information.

That was apparent to me when I went to Los Angeles after Houston. While I was driving there, and listening to the radio, the airwaves were filled with ads for area cancer centers. It’s big business. The ads especially plugged technology, new million dollar radiation devices and the stories of grateful patients.

If only it were that simple: go to the hospital that “cares” about you and has the gleaming machines. But in this age of precision medicine that is far from enough. It is unlikely even the slickest center has the best doctor for every cancer. They may lack the latest expertise and the availability of a clinical trial that might give you the hope of receiving tomorrow’s medicine today – and there are a lot of promising medicines in research.

That’s why you have to be a savvy patient and do your homework. You have to seek out the experts and weigh what they say against what is being offered. You have to be discriminating. And, in cancer, it’s doubly important because if you get the wrong treatment first you may be harmed and precluded from the right therapy later on. You can’t always recoup. I am devoted to connecting patients with unbiased information and helping them become students of their disease.

Let’s applaud the patients who attended our town meeting: becoming educated is critical for anyone facing cancer today. No one dreams of taking a college-type course in an illness but, to get the best care today, it’s a wise approach.

Wishing you the best of health,

Andrew