The Patient Power Blog

by Andrew Schorr – Host & Founder, PatientPower.info

social-media_200x200Social media that connects me with other people with cancer—especially the specific cancers I have dealt with—has been a godsend to me. In 1996, when I was diagnosed with chronic lymphocytic leukemia (CLL)—a disease I had never heard of—it was other patients on the original ACOR.org listserv that connected me with an expert in my condition and gave me emotional support. That connection saved my life, because I learned about an important clinical trial and was put in touch with other “list members” who were already in the trial that was proposed for me. They encouraged me to enter; I did; and here I am today. That was a “win.” And since then, there have been many others. I have enjoyed wonderful virtual relationships with so many caring people. In 2011, when I was diagnosed with myelofibrosis, I joined more groups, and they have been terrific for me, too.

But I have felt pain in online social media, too. And lately, in the groups I follow, there has been a lot. As much as I am thrilled to bring people stories of promising research, breakthrough new treatments, new ways to limit side effects, and stories of people living well, the fact is cancer is serious, serious business—and there are losses all too often. And between the wins and losses, there can be hope, even confidence, but there can be uncertainty, too. Right now, some of my fellow group members are reeling from the losses—a father, a mother, a husband, a wife. While their suffering is over, we suffer the loss and are angered that it happened. Now we mourn as a virtual group.

But even in that time of pain, support springs anew from the four corners of the world. It is a very cool phenomenon. People whose bond is sometimes a condition that’s even hard to spell correctly connect on a very human level over today’s social media.  ACOR, HealthUnlocked, Facebook’s open and closed groups, Yahoo groups, direct messages on Twitter, and many other places, too. We are blessed that this electronic connection is possible.

Soon Patient Power will be piloting a new approach, first in CLL. We call it “Patient Café™”. The idea is to give maybe 10 to 12 people at a time the chance to meet on live video online, facilitated by an experienced patient leader. In CLL, Carol Preston, on behalf of the Patient Empowerment Network, will lead our effort. This will enable people who have never met anyone else with the condition to very comfortably have “coffee” with others. We will keep you informed as this rolls out and as we expand it. So please be signed up for alerts on our website, so you’ll know as this develops.

But the bottom line is social media brings us highs—and lately, some deep lows. However, it also gives us a community worldwide for the good times and the not so good. My dream is the celebrations of better health will increase and the losses will diminish. Thanks to all of you who join me in one of these groups. Many of us have connected directly, and my heart has been touched because of you.

Wishing you and your family the best of health!

Andrew

Jack AielloIn short, YES. It’s the only way treatment is advanced in diseases like multiple myeloma and has resulted in FDA approval of six drugs for myeloma treatment in the last 11 years…with more coming.  We don’t have a cure yet, but I’ve seen survival averages double, even triple since I was diagnosed 20 years ago.  And how did these therapies come about? Myeloma patients participating in clinical trials.

In short, there are three phases of clinical trials: I-determine maximum tolerated dosage; II-determines if the new treatment works; and III-compares new treatment to standard of care.  There are trials for all levels of myeloma patients…from solitary plasmacytoma and smoldering to newly-diagnosed to relapse/refractory patients of all ages.  Patients participating in clinical trials are monitored very closely for both treatment efficacy and side effects, which I always consider a benefit to patients.

I’ve participated in two clinical trials, neither of which worked for me. However, I’m still proud I was able to contribute to science, though—it’s the only way we are going to beat multiple myeloma. And new treatment options are so important. As a dear multiple myeloma friend once said, “Having multiple myeloma is like being a frog on a lily pad. At some point, the lily pad sinks, so the frog jumps to the next one.” Multiple myeloma patients need to be looking one or two lily pads ahead to find a place to float.

Some patients mention terms like “guinea pig” and “placebo.” Truthfully if being a guinea pig means you’re trying something that’s not necessarily standard, then that’s probably accurate.  However, drugs being tested have certainly first been tested in labs and then trials incorporate an Institutional Review Board as well as a Data Safety and Monitoring Board that provide initial and periodic review of trials to ensure human safety and measure interim results that protects patients.  And placebo would only be used in conjunction with the standard of care arm in Phase III.  For example, if Revlimid-Dex were the standard of care, it might be combined with either a new drug or placebo to determine if the new drug improves upon the standard of care.

So please consider clinical trials.  You can find them listed at www.clinicaltrials.gov as well as talk about them with folks at the IMF, MMRF, and LLS.  And watch Patient Power’s interview with myeloma specialist Dr. Robert Orlowski as he shares his thoughts about myeloma clinical trials.

And, as usual, I’d love to hear what you think. Share your clinical trial experiences in the comments section of the blog.

Wishing you the best of success,

Jack Aiello

eric-hansen_180x243I had recently retired and started to get busy with my projects when I paused briefly for a routine physical—no worries, just a quick in-and-out and back to the fun stuff.

But wait. There’s more—like the doctor bringing me back in to his office, and closing the door.

“We have confirmed that you have cancer. It’s not curable. It’s called multiple myeloma, and you probably have three, maybe four years left,” he said. It was March 8, 2012.

Well, the next couple of days were mostly a blur of trying to figure out just what this was all about, this “incurable cancer.” No one in my family had any history of cancer at all—let alone something like this. After all, I was always healthy, with a bulletproof immune system, and I lived a healthy life tyle (mostly, sort of, if you ignore all the donuts and pie, and a double shot of vodka here and there).­­­­­

I spent hours wandering on the Internet looking for answers about what this particular cancer is, how it works, what the treatments are like and the big elephant in the room: what’s the prognosis?

It’s been 2-½ years, and things are a whole lot clearer. But it took some doing, and my life has a “new normal” kind of rhythm. I have been through a stem cell transplant (which is worth a whole column of its own); two infections; double pneumonia and some radiation treatments. But I feel good, catching salmon with a friend, and I’ve taken some great vacations with my wife and “caregiver,” Jeanne.

So what’s the deal, and what happens if you get taken into a doctor’s office and he closes the door and proceeds to deliver “the diagnosis?”

Here is what I can definitely recommend, based on my own journey, and based on the input and stories of many others like me that I have come to know about.

First, as soon as the shock wears off, get connected. Tell your family and friends what you know and keep them up to date. Personally, I’ve found that full disclosure is the only way to go. Find credible websites for drug treatments, new trials and descriptions of your cancer. Just be careful of the Mexican peach pit cure, the Chinese herb cure and the miracle vitamin- crystal-jungle flower-whatever websites. Some places to start would be WebMD; Up-to-Date; the National Cancer Institute; Mayo Clinic; Seattle Cancer Care Alliance; Dana-Farber Cancer Institute and other similar university research centers. For multiple myeloma patients, check out the Myeloma Beacon, Patient Power, multiplemyelomablog.com, International Myeloma Foundation (IMF) and mPatient Myeloma Radio to name a few. Become as knowledgeable as you can, so you can let your doctor know what you want, or at least ask the right questions, such as: “Which is better in my case: a full-out aggressive war on this thing or incremental, low-dose treatments to start out?”

Next, put your team together. You should find an oncologist who specializes in your exact kind of cancer, not just a general cancer doctor. Once you have had your workup and follow-up appointments and are comfortable with the oncologist, then get your local doctor in touch with them, so they can coordinate your tests, treatments and ongoing health issues. My team is great. I have Dr. Robert Urata here (no introduction needed) and his nurse Emily Bos; Dr. Edward Libby a hematologist/oncologist and his nurse Barbara at the Sea­­ttle Cancer Care Alliance (‘the Hutch’); and ­­­­­­­­­Tamara Simone, the chemo nurse at Bartlett Regional Hospital who provides expert local infusions, so I don’t have to travel to Seattle too often.
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Then, be your own advocate. Your doctors have hundreds of patients to take care of year-round. You are the expert on your body. So keep up on your lab results, treatments, options and side effects. Get second opinions. And don’t worry, your doctor won’t be insulted. Know when your pills are running out. Check the prescriptions and lab results and ask questions if you don’t understand something. I have actually caught a few mistakes along the way.

Meanwhile, my prognosis has gone from three years, to five, and now maybe seven to 10, just in these last couple of years. The science is moving quickly on cancer. I need to run to keep up with it.

Take care and see you later!

Eric Hansen
Juneau, Alaska

Susan Bottega and her husband, Bob

Susan Bottega and her husband, Bob

As I listened to Esther tell her story, my own came flooding back to me. My husband was always the “tough guy”—nothing was too heavy for him…literally. He was very “old school”—wanted to be the “man” of the family—and I should be the “weaker woman.” Well, that never really existed—maybe only in his head. I’m an RN with many years of experience. One might think that is an advantage, but it also has its inherent difficulties. It robs you of the time to take in what is dealt to you—you instantly know where you are and what you face. There is no time to adjust as you learn what is dealt to you.

My husband woke up one morning, and he was fine. He engaged in some strenuous physical activity, and I noticed he was breathing quite heavily. He was having difficulty breathing, and he felt a bit diaphoretic. I felt his pulse, and it was a bit thready. Immediately, I insisted that we head out for the ER. We laughed all the way there, because by this time he had recovered and felt quite a bit better. As we sat in the ER, we joked about how foolish he was feeling. Within two hours, he was diagnosed with a severe tear in his mitral valve that would necessitate immediate surgery and a secondary diagnosis of CLL. When he was given the diagnosis of CLL there was no explanation at all—just letters which had absolutely no meaning to him. I, on the other hand, immediately opened my iPad as the physician was speaking and got the clearer picture. The next few days were really tough as I had to get him through his immediate battle before even thinking about the one that lied beyond that. It was truly a test of strength to get through those weeks.

The surgery had complications, and he was in ICU for over one week. Esther spoke of counseling, which I believe is an excellent choice for assistance on this life-altering road, however, there was no time for this for me. So I turned to the best counselor I knew: God. I spoke to him each and every moment I was alone, and he truly helped me though it all.

Once Bob was discharged and on his road to recovery, we were able to discuss his secondary diagnosis. It’s been a long, hard road. His disease progressed quickly, and within one year his WBC count exceeded 600,000. His face looked like a home for several chipmunks overfed with acorns, and his Hgb was plummeting. Fortunately, we had assembled a truly competent team and treatment commenced. It’s been a tough road with lots of ups and downs. I would like to tell you that I weathered the storm without much damage. But the truth be known, it’s taken a toll on both of us. We have grown closer in a very different way.

We have come to understand each other and to seek out each other’s strengths as we needed them. Our roles have changed, and I think we have both come to understand that life is not infinite. But we do have today, and it’s up to ourselves just how much we make of this day. Waste not, want not. Time is a valuable resource and should not be wasted on silly disagreements.

For the holidays, I bought Bob a gift that required him to think about something other than his health. I call it “the gift that keeps on giving”—a beautiful puppy. Beamer keeps Bob moving whether he likes it or not, and it gives us a daily focus. We are fortunate to have a large and wonderful family—lots of grandchildren and kids who are always willing to assist at any time. Every day, I try to focus on all the gifts around us and realize that while we may be fighting a huge battle, there are so many others that were unable to live to fight this battle. There is so much hope on the horizon, and this is brought to me every day via contact with Patient Power, ACOR and daily follow-ups with groups on the Internet. We are not alone in our battle and support, and knowledge is at our fingertips 24/7 via social media. One has but to reach out, and it’s there.

How have you weathered the storm? Please tell me in the comments section.

Sincerely,

Susan Bottega

Dr. Leonard Salz, a renowned GI cancer specialist at Memorial Sloan Kettering Cancer Center in New York, said on the U.S. news program “60 Minutes” the other night that we must—in the U.S.—discuss the high cost of cancer drugs. Dr. Hagop Kantarjian, head of the leukemia department at MD Anderson, whom I know well, agrees as […]

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When I was first diagnosed with Multiple Myeloma in 1995, I was assigned an oncologist. Since I didn’t know anything about myeloma, I asked him about his experience and, in particular, how many myeloma patients was he seeing.  When he said “two,” that didn’t give me much confidence and I looked for another oncologist/hematologist, whom […]

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I was worried about wasting away. But I am happy to tell Ringo, Paul and George that today I am 64 and feeling strong, vibrant, and not headed to living in a cottage and sitting by the fire. Too much to do! I am writing this from Madrid and the ESMO – European Society for Medical […]

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Years ago—when my husband Andrew and I founded Schorr Communications, which became HealthTalk, which evolved to the Patient Power of today—he was not a patient in the broad sense, and I was not a “caregiver” above and beyond daily devotion to family and friends.  We knew there was a great need to support patients and […]

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This is a story about caregiving—about how the role is thrust upon you and what it means to accept it, learn it, and live it. My name is Sheryl McIntire, and I am a patient advocate and caregiver. My Story: I was in my first year of pre-medical studies when my husband, Larry, was diagnosed […]

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By Jack Aiello I’m often asked, “If you were diagnosed 20 years ago and you are no longer getting treated, why do you still keep involved facilitating a support group or attending a myeloma seminar?” My answer? “Because I remember.” I remember being told of having cancer called multiple myeloma…and being scared about the word […]

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