The Patient Power Blog

by Andrew Schorr – Host & Founder, PatientPower.info

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-bob_175x225

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

drugs_300x199Dr. 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 do so many other doctors, patient advocates and patients. Many therapies are now costing over $100,000 a year. And in this age of “chronic cancer,” you might take that medicine for years. Now some experts are saying to really keep the cancer at bay you need to take more than one medicine together. $200,000+ a year for many years?

Just this week we are releasing a roundtable discussion with lymphoma experts and one segment is devoted to the high cost of the newest medicines.

Obviously the expenditure is not sustainable. In my own case, I received six cycles of chemotherapy (and supportive care medicines, too) in 2000 for my chronic lymphocytic leukemia (CLL).  And then I was done. I have had no other CLL medicine since then and, fortunately, that disease remains in remission. Not everyone is so lucky, and they may be candidates—maybe me too in the future—for one of the new anti-CLL pills used alone and in combination. Again, around $100k per year per patient for each medicine.

But I haven’t been spared a high cost med even now. I developed a second cancer in 2011, myelofibrosis. I am very grateful there is a pill that has been remarkable in controlling the symptoms of the disease. I take a small white pill every morning and evening and lead a normal life. When I arrange refills, I am delighted to hear that right now I have no co-pay. The cost of the drug to insurance? About $8,000 a month.

At age 64, I am approaching Medicare coverage. Will I have the 20 percent co-pay to shoulder? Maybe so. Is it worth it? Probably. But should prices be that high anyway and to remain high year after year? For example, should prices decline over time as pharma makes its money back and then some? Stockholders are happy, and a growing number of patients—living longer—can afford to live well without going broke.  One problem is a law that makes Medicare pay retail prices. Instead, they should have huge buying power and negotiate lower prices as do government agencies in other countries.

I am not trying to stifle medical innovation by for-profit companies. I am very grateful to Genentech and Roche for Rituxan in 2000 (I received it in a trial so, I believe, at no cost to my providers) and to Incyte for developing Jakafi, the pills that help me to live a full life today. But we have to have a serious ongoing discussion about what is right, moral and sustainable. This must include oncology professionals, government officials, insurance companies, pharma and, most importantly, you and me as patients and care team members.

One other point. In the U.S., many oncology clinics make extra money on dispensing more expensive IV medicines. The doctors get a commission, and some would say this encourages them to use a more expensive medicine—but not necessarily a more effective one—in order to get a higher fee. You, the patient, have no idea. Here we need transparency. We need to be able to trust our doctors not just to treat our cancer effectively and with the least “clinical toxicity” but also with the least “financial toxicity.”

As more people survive cancer and remain on ongoing medicines, the U.S. has to have a fair and open discussion about the cost of cancer medicines. Thanks to various medical journals, leading physicians, patient groups and now the media for bringing attention to this issue. In the U.S. now, one out of every three of us will face some type of cancer.  The high cost of one or more cancer medicines can be a clear a present danger, for some, as worrisome as the cancer itself.

I urge you to comment on this as we need to keep this discussion rolling.

Wishing you and your family the best of health!

Andrew

Jack AielloWhen 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 I found. After “interviewing” him, I asked my same question to which he answered “12.”  I liked him and figured with nearly an order of magnitude more treating patients, he would be my new oncologist (even though he agreed with my original oncologist’s treatment recommendation). Even more important, he encouraged me to talk with doctors at my local Stanford Cancer Center and when I learned about how myeloma was being treated in Little Rock, AR, he encouraged me to check it out.

These days, there are many myeloma experts available and accessible to myeloma patients and caregivers.  Organizations such as Patient Power make wonderful educational videos available where myeloma experts present information about myeloma that patients can understand.  And if you have the opportunity to attend a seminar with the experts, you can ask them questions face to face. I’ll be hosting an upcoming Patient Power forum in Houston where attendees will have the chance to connect with other patients and learn from the experts.

I always encourage myeloma patients to get 2nd, 3rd and even 4th opinions from myeloma experts, who in turn, will work with your local doctor.  One reason for multiple second opinions is those myeloma experts don’t necessary agree on best approaches for a given case.  And sometimes they’re biased with the treatment options available at their specific treatment center.  While not intended to be a knock, patients need to take this into account when more about treatment centers.  After all, we need to be our own best patient advocate, and together with our caregivers, can make a plan after getting informed.

Did you benefit from a second opinion? Share your story in the comments section.

Wishing you the best of success,

Jack Aiello

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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I wrote a blog a few weeks ago about my Seattle friend, Daniel Mulhaney, who is slowly fading away with the terrible illness ALS. As you probably have heard, the ALS Foundation had a public relations coup when they got thousands of people worldwide, including many business, government, and entertainment celebrities, to take the “Ice […]

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The other day, Patient Power producer Tamara Lobban-Jones gave us a terrific video love story. It’s the story of newlyweds Jessica and Esteban Izquierdo and how Jessica was diagnosed with non-Hodgkin lymphoma just weeks before their wedding. Jessica and Esteban had been sweethearts for years, and this was a blow they never expected. But the power […]

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