The Patient Power Blog

by Andrew Schorr – Host & Founder, PatientPower.info
Patients at the Patient Power Myeloma Forum in Barcelona

Caregiver and Patient at the Patient Power Myeloma Forum in Barcelona

When I was first diagnosed with chronic lymphocytic leukemia (CLL) in 1996, I just wanted the doctor to heal me. I dreamed of a magic wand that a healthcare provider could wave that would take the disease away as suddenly as it had appeared for me (even though it had probably been developing for years, I just didn’t know it!). No such luck, of course.

So what followed was a total disruption to my life. Fear, sleeplessness, psychological counseling, and a long procession of diagnostic tests and years of blood tests, IVs, and generally being a pin-cushion. Many people in white lab coats and uniforms have done many things to me, as they have to so many others.

One might wonder whether our role as patients today is simply to submit—that a passive role is good enough. After all, it requires so much strength to march from appointment to appointment, exam to exam. Go here, go there.

I would argue that today the passive patient, or at least the passive patient and his/her care support team, is likely to get the short end of the stick. Fear will be greater because you will be less knowledgeable about what’s going on and what is possible; you’ll have no chance to ask important questions, no chance to bring up something a provider has overlooked, no chance to sound an alert about a mistake (and there can be many), no chance to get a second opinion, no chance to participate in a clinical trial at another center, no chance to get support from others.

So whose responsibility is it to make you active rather than passive to be sort of an “impatient” rather than a “patient?” Yours! You have that choice. You can say “heal me” and roll over and pretend it’s all a bad dream. Or you can pick yourself up off the floor, put one foot in front of the other, and grab back some level of control. Believe me, it is all to the good, and I have seen that not just in my life but in most of the thousands of patients I have interviewed. The Andrew Schorr unscientific poll results are clear. If you accept responsibility to be an engaged. questioning, information-seeking patient; you have the best chance of doing better and feeling better along the way.

Cancer is not a bad dream. It is real life. Just as you take responsibility for other aspects of what you face, you gotta take responsibility for this journey, too.

Agree or not? Tell me what you think, and we always welcome the publishing of other points of view.

Wishing you and your family the best of health,

Andrew

bio_margo-sorgman_180x243_aMy name is Margo, and I was diagnosed with PV in late spring of 2014.   Probably like many of you with an MPN diagnosis, it was incidental.  I was attending a special event and did not feel well.  This led to a series of steps, which brought me to Dr. Brady Stein, a wonderful doctor.  I came to our first appointment with a single-spaced narrative and set of questions about red blood cell production.  He leaned forward and told me the study of MPNs was his life’s work and that he would take good care of me.  And as I walked home, I knew I was going to live a full life.

I keep up to date, like many of you.  I am learning how to navigate those “firsts” after diagnosis.  When I went for my flu shot, I updated the form to include PV. It felt strange at first.  But the more I explained PV, the more of an authority I became.  I know I will approach my diagnosis with energy and a determination to take charge.

Of course, there are some changes.  But many of the changes are improvements.  I pay more attention to my body.  When I get tired, I can decide whether to rest or keep going.  When I am feeling fatigued after standing in one place for a bit of time, I now shuffle my feet to alleviate that fatigue.  Another positive outcome from my PV diagnosis is to think about how I spend my time.  I am getting better at selecting activities that come my way.  When I go for my blood tests and periodic phlebotomies as a result of my HCT level, I am surrounded by others with cancers so much more serious than mine.  And I leave feeling a bit guilty about my good fortune to have a superb doctor, a robust field of MPN research, and a great family and friends network.

PV has not robbed me of the joy of loving others, watching a beautiful sunset, and being mesmerized by our Maestro Muti as he conducts the Chicago Symphony Orchestra.  I take classes, volunteer actively and love to write.  There is much insight when I see my hopes and tensions on the page.  Soren Kierkegaard reminds me that “life can only be understood backwards: but it must be lived forwards.”  I agree.

After diagnosis, what changes have you found to actually be improvements? Tell me in the comments section.

Margo

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

I 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. […]

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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 […]

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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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