Initiatives & Patient Stories
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Hear what those with multiple myeloma are saying
Understanding a person’s unique makeup is key to helping tailor personalized therapies. The facilities of the Institute for Myeloma & Bone Cancer Research conduct work that literally fast-tracks the development of cutting edge “customized” treatments. Our therapies are helping patients with multiple myeloma and related diseases to live much longer with productive and satisfying lives. Institute for Myeloma & Bone Cancer Research: Kilimanjaro from 6360 Productions on Vimeo.
By Ron R. Public Relations/Public Affairs/Rancher
Before I was diagnosed, I remember when I was taking a hike with one of my good friends and every so often I had to stop to catch my breath. I felt like I was out of air. In retrospect, that was one of the first signs that something was wrong with me. Finally, during a checkup a few months later, an abnormality did show up in one of my blood tests. That’s when the doctor gave me the dreaded news that I had “multiple myeloma” and that I had 3 or 4 years to live! I thought he said “melanoma” – I had never heard of MM. So, I went online and what I read scared me to death. I think I was in shock. The statistics didn’t look too good. But, during my research, I kept seeing Dr. Berenson’s name on many of the articles about MM and learned that he also saw patients. My wife agreed with me that I should see Dr. Berenson and also see the doctor that my regular doctor recommended – I would seek out two opinions. The other doctor said that I needed a stem cell transplant right away or I would die. Then, I went to see Dr. Berenson. He said that he didn’t think that I needed a transplant – that I was in good shape and young – I was 55 at the time. He also said that he’d like to put me on a trial with a drug called Zometa which had not yet been FDA-approved. I went back to the other doctor just to see why he thought that I needed a transplant. I wanted him to know that Dr. Berenson said that I didn’t need one, only treatment with monthly Zometa. I’ll never forget what the doctor said to me: “You better make up your mind who is treating you.” I said “I just did” and I left his office for Dr. Berenson’s clinic. I never did have that stem cell transplant and that was 14 years ago! Dr. B. put me on the Zometa trial and I responded. I felt great on that monthly treatment for 8 years. We didn’t have to do anything else!
By Bradley K. Music Composer and Real Estate Investor
It all began on Monday April 26, 2004 at 10:00 am when I went in for a routine annual physical exam. There was nothing atypical about this particular physical. I felt perfectly fine. Two days later I was diagnosed with a monoclonal protein spike, and by May 7, 2004 I learned more about this particular M-protein. That was more than 9 years ago. “You have MGUS,” said the internist. “MGUS,” I mouthed to myself. Perhaps this diagnosis is like a “kick in the pants,” a reminder that life is, indeed, not a dress rehearsal. It’s the “now” that counts—the music I am composing now, the people in my life now, the places I am traveling to now, the literature I am reading now and, yes, even the things I am learning about my disease now. The human body is like an inner universe, as much a frontier as our outer universe. I see Dr. Berenson as the captain of this particular exploration and we, his patients, are part of the crew. In an odd way, perhaps it’s the quest itself—the quest for understanding, the quest for cures—that makes life worth living.
By Bennett K. Attorney
I fell off my bike. It was August 1991. I was merely peddling slowly up a small hill in Mendocino, California, while on vacation with my wife. My legs just gave out on me. I was adjacent to a grassy part of the hill, so I just fell sideways and gently landed on the dirt. Two days earlier, while driving up the coast from our home in Los Angeles, we stopped at a lighthouse. I wanted to dash up its steps to the top. I got to the top, but had stopped dashing long before reaching it, my legs having grown very tired. I thought nothing of these separate occurrences, attaching no significance to these apparently unrelated events. At least not until August 30, 1991, when I received blood test results after a routine physical exam. My internist advised that he had bad news and good news. The bad news was that I had a blood cancer. The good news was that it was Waldenstrom’s macroglobulinemia (WM), an indolent, slow-moving form of cancer that is in the bone marrow and lymph glands. My internist, a friendly acquaintance from college, referred me to Dr. James Berenson, who has become more than a friendly acquaintance over the years. Indeed, we have grown (much) older together. Jim has benefited from being exposed to my sparking personality. I have benefitted more so, however, not only from his, but because, as a result of his thoughtful and skilled care and caring, I am still around to write about my experience with this disease. During all of these years, I continued to play handball, ski, bike, hike, and backpack, needing to pick those times to do so when I was not troubled by a bit of anemia (such as it has been, on and off). Thankfully, I have not been anemic for quite a long time now. Also, I have worked full-time throughout my WM. We have been able to travel and live a mostly normal life. Although the reality of my condition has been a constant in my life from the start (when will something go wrong, or get worse), I have been thankful that all has gone as well as it has. For various reasons, much having to do with my running out of others to do certain things with, I have discontinued some of the above sports.
I Have WHAT?
A book about myeloma filled with patients’ stories and healthcare professionals’ advice written by Debra Berenson. For Purchase:
- Call: 310-623-1214
- Email: firstname.lastname@example.org