International MPN News, Science & Opinion

January 15, 2013 Splash

 January 15, 2013, Vol. 3 No.4

The Missing Patient:  Why our fatigue isn’t treated…

 MPNclinic:  Top MPN specialists answer 118 questions… 

Michael Goldstein on Stem Cell Transplant

Stories ..Jeremy, Harvey, Andrew, and Beatrice 

 THE LIST:  100 patient-recommended hematologists 

The Missing Patient ...  So you’re tired.  Your doctor shrugs.  Fatigue, the most common and debilitating MPN symptom, is officially “under-diagnosed and under-treated.”  Here’s why our fatigue doesn’t get the serious attention it demands and what we can do about it.  (Read it here) 

The MPNclinic…

 Seven of the world’s leading hematologists — SILVER, VERSTOVSEK, MESA, HARRISON, GOTLIB, LEVINE AND ORAZI  —   answer 118  tough MPN questions.  Find your answers, ask your questions (Right here).

stem cell Dr. Michael Goldstein on Stem Cell Transplant (Read it here.)

Jeremy headshotPapa’s got a brand new bag… Jeremy, fresh from his MF diagnosis has adapted his exercise routines and has some stories — and tips — to pass along. ( right here)

Beatrice at GalleryStill duking it out... Beatrice Larroque gives us a round by round account of her battle with a heavyweight MPN..(Read more).

Andrew Schorr Cr.

Andrew Schorr…a lucky duck with MF. Having recovered from CLL before his MF diagnosis, Andrew knows the downside of blood cancer…but to this  journalist there’s an upbeat MPN future (Here’s his story

 
HarveyA little kvetch, a little kvell…Harvey Gould comes to terms  with his diagosis and new normal as he mourns a turn in the long and winding road.  (Here’s his story)
News Briefs Stem Cell Research gets a boost from an unusual source…. Cell Therapeutics squares off for Phase III Pacritinib trial…. Break out your coolest threadsSpring Ball because MPD Voice is Swinging at the Spring Ball….IMEDEX rolls out its Novartis sponsored MPN European Meeting in Spain, April 15  featuring high-powered hematologists….Read all stories right here.

The Updated List of Hematologists...The Catalog of Articles

Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNForum articles or write your own story or Open a discussion with your…Letter to the Editor

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Comments on: "January 15, 2013 Splash" (2)

  1. Very interesting view, it does make one wonder.

  2. Ron Russell said:

    Blood Cancer, Fatigue and Transfusions

    Zhenya Senyak’s article entitled, “The Missing Patient,” rightfully lamented how fatigue, the most common and debilitating symptom of blood cancer, garners so little attention from doctors and researchers.
    Mr. Senyak wrote his article after attending the American Society of Hematology conference in Atlanta where he noted the seeming absence of the MPN patient and the invisibility of the major symptom that these patient suffers, namely fatigue.
    Fatigue, he notes, is cited by 80% of blood cancer patients as the most distressing symptom, even more so than pain.
    This observation struck a chord with me, because being somewhat of a medical oddity, I have struggled with the various stages of Polycythemia Vera for over 45 years.
    For decades, my body produced far too many red blood cells, requiring phlebotomies about every month. During those decades, I learned to endure the challenges of living with blood cancer.
    Ironically, even though I commonly suffered some discomforting symptoms, such as lightheadedness, itching, swollen lymph glands, various aches and pains, I lived a relatively normal life.
    In fact, a strange peculiarity of living with a hematocrit—which doctors in those days chose to keep in the mid-fifties—was that I had far more energy than most normal people. The increase in red blood cells greatly increased my endurance and stamina. Those red cells were my little buddies, sucking in extra oxygen for me.
    Indeed, the disease was almost a godsend, because I was extremely active and put those extra blood cells to good use. I could jog for miles, then play tennis, and then go off to the gym for a grueling three-hour workout. I often worked 13-hour days without fatigue. For many years I worked two or three jobs. Rather like Lance Armstrong, I was blood doping, but naturally.
    Then five years ago the disease moved into the “spent” or “post” phase. At this point, my bone marrow was exhausted from years of overexertion and now seriously slackened cell production. Since then I have been transfused with two units of red-blood cells about every 14 days. And, as Mr. Senyak pointed out, fatigue became my closest, most hated nemesis.
    Fortunately, my wife found Dr. Ruben Mesa, a highly gifted physician and cancer specialist, at the Mayo Clinic, and I have been involved in clinical studies of experimental drugs, such as Pomalidomide, which worked like magic for 17 months in obviating my need for transfusions. When the Pomalidomide ceased working, I joined a new study with the drug nicknamed, Cytopia (CYT387.) I have had decent benefits, but so far not as good as with the Pomalidomide.
    I still work full time, as an English teacher, and I still maintain my house and garden, two cars, etc. and I teach a huge class of sixty students and coordinate a dozen volunteers who help me.
    But I maintain this level of productivity primarily because (forgive the immodesty) I was blessed with unflagging will power. Without this trait, I would likely do little but lie about in a near stupor. Truly, there are times when I am so exhausted that I cannot sit at a table without slouching over in near unconsciousness. There are times when I am so exhausted that I literally lie in bed for twenty minutes trying to muster the strength to hurl myself upward and force myself to dress and engage myself in some chore.
    When my hematocrit falls to around 30, the fatigue and lightheadedness become so taxing that I lack the energy to fulfill the most minor obligations. My ability to concentrate dips dramatically. My memory for even the most mundane details fails me. I stammer for words. And then a morbidly enervating depression walks in like a corpulent gorilla and stands on my chest, making it virtually impossible to fulfill the simplest tasks.
    Each individual is unique, so some of you may be saying, “Well, a hematocrit of 30 is great. I feel okay when my hematocrit is 20.”
    This may be true for you, but not for me. I know because five years ago when my hematocrit was allowed to fall to 21, I had the humiliating and frightening experience of passing out in a Costco store. By the way, your Executive Member Card at Costco means nothing when you pass out there.
    Dr. Thomas Bradley of Monterey, California, one of the most perceptive and curious doctors I have had the pleasure to meet and to be treated by, suggested that my body may require a higher hematocrit because I lived for more than 40 years with an abnormally high red-cell level. Perhaps it is somewhat like an obese person who feels as if he is starving when he goes on a diet. The abnormality is normal.
    Unfortunately and ironically, most of the fatigue I endure is not caused by my disease. It is caused by my insurance company, which arbitrarily decided that all people can live on a hematocrit well under 30.
    Under their restraints, unless I want to pay the $3,500 for each transfusion, I am not allowed to receive a transfusion until my hematocrit falls below 30, meaning that my wife must drive me about, and I must conduct myself at work like a grumpy, confused zombie.
    Insurance companies have unreasonably set this threshold, assuming it reduces the number of transfusions that they must pay for. I suspect nothing could be further from the truth.
    In my case, I have noticed an odd phenomenon. If my hematocrit is kept around 35, I feel relatively normal and can do my work and chores quite well, though I am still far from normal. However, as soon as my counts drop near 30, those counts suddenly fall off a cliff. Within a day or two, my hemoglobin or hematocrit can tumble five points, and I am a basket case again.
    Sad to say, and contrary to the sympathy the medical and insurance community espouse, I have never been given the privilege of allowing my hematocrit to stay near 35. For example, when I have fallen to 33 and am still feeling well, I have never been allowed to get a transfusion that would raise me to 40 or above. I suspect that I might actually require fewer transfusions, if they would just keep me away from that hematological cliff of 30 or below, for my blood counts remain relatively stable until I near that point. Then, as if my body recognizes that I am starving from a lack of blood cells, it says, “Okay, Amigo, you want to mess around with us. Watch this!” The next day my counts are 27, and off I go to the hospital for my nine hours of transfusions.
    A few years ago, I had a Greek student whose under-educated father had leukemia. He was old-fashioned and fearful of receiving transfusions. He thought they would give him AIDS or make him gay.
    As a result, his hemoglobin ran around 20, and he could do nothing but lie on the sofa all day and then sleep 14-hour nights. His daughter tried to convince him that he would have more energy if he agreed to transfusions, but he staunchly refused. He spent the last years of his life completely enervated and severely depressed, rarely getting off the sofa for any reason at all.
    Tell this story to doctors and they shake their heads in disbelief and admirably exclaim, “How sad that one would reject the advances of technology that could have at least made his last years more tolerable and normal.”
    On the other hand, try to convince those doctors (and insurance folks) how you, too, want the chance to enjoy whatever time you have left and how you could achieve that goal if they authorized transfusions based on your needs and not on the corporate balance sheet and watch their eyes glaze over.
    Please don’t misunderstand me. Owing to the myriad of blood diseases, and the immense variations in symptoms, I fully understand that transfusions alone will not remediate everyone’s fatigue. As we all know, the vast complexities of blood cancers defy simple explanations or solutions. I also understand the inherent dangers of living long-term on transfusions, especially if one lives in a small community with a small donor pool.
    Yet for those of us lucky enough to achieve some alleviation of chronic fatigue through transfusions, being denied the volition to receive this treatment is akin to subjecting us to a debilitating torture that inadvertently worsens our hardships, adds to our depression, and even saps our will to live.
    That Mr. Senyak concludes that fatigue in cancer patients has been “under reported, under-diagnosed, and under-treated” did not surprise me. What has startled me over the years is that such brilliant doctors and researchers have ignored the bleeding obvious and allowed corporate concerns to hold a powerless group of blood-cancer patients hostage.
    Ron Russell

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