International MPN News, Science & Opinion

The Missing Patient.

A spooky lack of reality

by Zhenya Senyak

There is a standard of care for blood cancer fatigue. “Monitor and intervene.”  In reality, it’s more like shrug and eye roll.   
    You’re tired, so’s everyone.­ Let’s move on to something we can actually treat.
    There’s a good reason for this state of affairs. The MPN patient — the person — is missing. 
    Research biologists focus on infinitely small interactions in a complex molecular universe. Hematologists focus on the organic effects of our MPNs to slow progression, relieve our symptoms. Even we, patients, seem to separate ourselve from the chaos raging in our marrow.  As a result intense fatigue, the most common effect of myeloproliferative neoplasm – as with other blood cancers – continues to be largely unexplored.  
   This is a story of one discovery that emerged when one MPN patient dropped the burden of fatigue.

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Something was clearly missing from last month’s big hematology meeting in Atlanta.

PRESENT HALL

At the core of this international gathering of brilliant scientists and physicians, amid all the multi-screen presentations, graphic wall posters,  and scholarly talks, was a spooky lack of reality.

Imagine The New York Auto Show, with technology and design on display but no buyers in attendance.  What was missing at ASH was…us.

Here is a massive international gathering of cutting edge bench scientists and hematologists, women and men with the courage and brainpower to explore new biologic territory.  They work deep in the bowels of our DNA, explore complex molecular pathways and secret biochemical processes. Many simultaneously maintain a clinical practice.

Still, nowhere to be found was a paper on the object of all this work. 

The MPN patient.

Within the American Society of Hematology MPN section there was literally no focus on the MPN patient, the whole human being who contains the blood that is the presumptive subject of the meeting. You could catch glimpses of us in reports of clinical trial where some of our individual responses are aggregated to create a statistical dataset.  But no amount of deconstruction would uncover one of us, an actual MPN patient.

So far as I could tell, the focus of the MPN section of the meeting was on developing and testing molecules that would interrupt known pathways through which the Janus kinases signaled blood production.   There was some action on other fronts – telomeres, heat shock proteins, some flashy exhibits, some humble presentations of biopsy needles and assay kits.  But no hint of interest in uncovering the effects of myeloproliferative neoplasm on the whole life of an MPN patient.

If it were just this professional meeting, it may not have mattered. But this mechanistic approach to MPN research and treatment extends to hematology practice as well.  

We are partners in our own disappearance

 It is not a lack of compassion on the part of our physicians. Everyone I know personally seems to care deeply about our well-being.  Traditional medical practice continues to largely focus on things, the physical, visible manifestations of disease.  Our spleens and marrow, our symptoms, genetic anomalies and sub-atomic bio-chemical processes are the basis of testing, diagnosis, and therapy.   

We willingly agree. We need to avoid thrombosis, want swollen spleens reduced, want our symptoms alleviated. Those symptoms are addressed more or less successfully based on the skill and experience of our hematologist. Symptoms, but not us.  It is as if we, as human beings,  have somehow agreed to disappear behind a wall of x-rays, blood film and charts that take on a life apart from our own.  Our primary symptom is not photographable. Our chief complaint cannot be weighed or measured with any accuracy.

We don’t wait for a thrombotic event, 3% blasts or a +2 fibrosis level before initiating treatment for MPNs. Why are we and our doctors willing to wait until we plunge into irremediable despair and exhaustion before starting treatment?

Since blood cancer related fatigue (BCR Fatigue) is a much more likely outcome of an MPN than stroke  – and perhaps the most debilitating MPN manifestation of all — why do we not from  the very beginning enlist professionals on our treatment team?

What we need as patients, and what our physicians and clinics might consider providing as a clinically and fiscally effective measure, is a routine strategic collaboration among traditional medical, psychological  and alternative, complementary therapies.  MPN is a whole life experience, affecting our plans, relationships, work, thoughts, feelings and self image as well as our spleens.  It is part of our being, not simply a breakdown of machinery that needs to be repaired.  Treatment of MPN requires a whole team approach….including specialists on our team to address the severe impacts of MPN on our cognitive, emotional and economic being.

The National Comprehensive Cancer Network, a non-profit alliance of 21 major cancer centers, produces a set of recommendations for healthcare professionals. They conclude that fatigue in cancer patients has been “under-reported, under-diagnosed and under-treated.”  Their guidelines for CRF management call for screening of every patient for fatigue “as a vital sign” at regular intervals and management through drugs and other means, including psychosocial interventions.”

Treatment of MPN absent this component inevitably overlooks the psychological damage inflicted by exhaustion, denial, grieving, decline of physical abilities and all the rest. Denies us, in fact, early intervention and treatment of our concomitant depression and blood cancer related fatigue. Effective management of Cancer related fatigue, says the NCCN , “requires an informed and supportive oncology care team.”

Proof that a new approach to MPN therapy is needed is the MPN section of ASH.  This Super Bowl of Hematology never touched on the primary issue affecting those who suffer from blood cancer according to the NIH and the NCI, among many others. 

Fatigue, for example

The single biggest complaint of patients suffering from blood cancer is fatigue. 80%, at least of patients in therapy and over 60% of all MPN patients.  And yet at the major annual meeting focused on sharing discoveries leading to new blood disorder treatment options,  not one paper was presented by a psychologist, a social psychologist, a psychiatrist, neurologist, a mid-brain specialist exploring management of blood cancer-related (BCR) Fatigue.

A Central Reality

It might have been outside the area of expertise on display at ASH, but Fatigue is a central reality of MPNs.  According to the NCI, “Patients perceive fatigue to be the most distressing symptom associated with cancer and its treatment, more distressing even than pain….”

The MPN patient view

The problem of reducing our MPNs into discrete symptoms is not limited to our physicians or the bench scientists and drug companies looking for magic molecules.  It’s a reality we ourselves buy into.

Regardless of type, our MPN is not a thing, an objective occurrence outside our life.  It is not an unwelcome visitor but a life-altering cascade of events affecting our minds and bodies, our  families, social relations, work, and fundamental realities. Just think back to your first diagnosis to recall how it rocked your world…and still does.  

 A study published in the British Journal of Cancer “Fatigue and Cancer: Causes, prevalence and treatment approaches,” confirms there is a significant disconnect between physicians and their patients as to the impact of fatigue.  91% of patients report fatigue prevented them from living a normal life including 75% who changed employment due to fatigue. 61% of cancer patients report fatigue adversely affects their lives more than pain.  Their oncologists, however, disagree with a similar percent (61%) believing pain affects their patients more than fatigue.

Patient input is essential to determine the dimensions of BCR-Fatigue.  Only patients know the true impacts of MPN fatigue. The rest is just second hand news. We need to trust ourselves. We have access to data only available to our physicians through us. We live the disease. It inhabits us, we feel the effects. Our doctors can only note the impacts we report or exhibit.

Our physicians, the good ones anyhow, suffer with us, suffer for us, but never actually suffer MPN fatigue. They rely on us for feedback and we do not yet have the sufficiently calibrated tools or vocabulary to provide an accurate picture. But even when we can express our BCR fatigue to our physicians we often shrug it off or hesitate to take the risk.

divider horizon line

“Physicians often have insufficient knowledge about fatigue and its treatments or underestimate the impact of fatigue on quality of life, while patients may consider it an unavoidable and untreatable side-effect and fear that reporting it may incite a change toward less aggressive cancer treatment.”

Annals of Oncology, February 2011

divider horizon line

A simple idea

The official diagnosis of ET, PV or MF is an event of such magnitude that, for most of us, it’s accompanied by shock and maybe a touch of fear.  In general, fatigue accompanies cancer and its therapies.

An hypothesis worth testing is that fatigue is our first line of defense, a product of the physical and emotional shock of having our world rapidly turned upside down.  We shut down and as a result trigger a disorder, 

There are likely many components to our fatigue deriving from our MPN. But since there is no linear relationship between our fatigue levels and our HCT and hemoglobin levels, it’s possible the source of the crushing BCR fatigue is in another disorder completely, a co-morbidity that could be responsive to treatment. 

The Fatigue Project

The idea of the Fatigue Project launched two months ago tired is to acquire data to design a clinical study of the relative effectiveness of fatigue reduction tactics in MPNs. Anecdotal, narrative reports submitted by patients  can start the conversation that might be of use to designers of such a study. MPN patients can also volunteer to be part of the study by e-mailing ourMPNforum@gmail.com and typing “Fatigue Project” in the Subject line.)

The leading fatigue reduction strategies presented by the initial group of 36 patients include Exercise (28%), Nap (17%), Diet (14%), Sleep (14%), Walking (11%), Socializing (8%) and Willpower (8%). Other tactics included laughter, drugs, supplements, hydration, running, meditation, yoga, coffee, wine.  Most participants employ more than one means to reduce fatigue, but 19% report giving up entirely on finding a successful way to reduce the MPN fatigue burden. 


Ruben Mesa Top TenDr. Ruben Mesa published a list of Top Ten Strategies he has found effective in his long experience with MPN patients.  As the lead author of the “Burden of Fatigue”  study –undertaken with Joyce Niblack and others — and primary developer of the MF Symptom Assessment Form, Dr. Mesa is one of the most visible hematologist/clinical investigators to zero in on MPN fatigue and its effects on MPN patients.

His Top Ten List, originally published in MPN VOICE rounds up the usual suspects in an empirical, common sense catalog that should surely be tried by all of us…if possible.  They are: Getting enough sleep, walking, eating well, taking time for reading, wearing comfortable shoes, swimming, fresh air and being outdoors, stretching, less time on the computer and balancing work and life. (For the full text, click the MPN VOICE link, above.)

A sudden realization

My own contribution to the Fatigue Project came about due to a sudden realization.

In the past several weeks, to anyone who would listen, I’d complain about a particularly acute and prolonged period of MPN fatigue. I’d nap, wake up, wonder what day it was and slide back to sleep. My concentration and focus were shot. When I would finally get to work, suddenly I’d lose all energy, feel my eyes get heavy and gritty and, under a black cloud, head back to bed.

With the ASH Conference coming up, I wondered how I could handle meetings I had arranged.  As a stopgap, I figured I could drive down to Atlanta, park in a lot near the Convention Center and pop into my Camry for a quick nap when I felt exhausted and had to crash.

Saturday, I left my home at 5 AM, drove over the Southern tip of the Appalachians, and registered at the Press Room five hours later. I was able to complete a few interviews before a late afternoon taping for MPNforum Magazine. After touring the arena-sized poster and exhibit halls,  I drove to my hotel. (The hotel, a couple of miles away, turned out to be crummy and noisy.)

By 7AM, Sunday, I was in my car headed back to the Georgia World Congress.

I can’t pretend to have covered the ASH conference but the day was crammed full of meetings, conversations and a torrent of information and new developments. 

After a working dinner, instead of returning to my crummy hotel, I headed for the I-85 and North Carolina.  At 2 AM, after 500 miles of driving and dozens of miles walking, I pulled into my driveway.…all without having a single nap.  Without feeling a hint of MPN fatigue.

I was tired but clear-headed.  The Atlanta trip had been therapeutic. What happened?

Turning back to Professor Mesa’s Top Ten Tips to combat fatigue,  I saw I could check off most of the items on his list—walking, eating well, getting outdoors, stretching, getting off the computer and balancing life and work.   Most importantly, I broke my routine, an isolated round of computer-based work. 

To me, the conclusion was inescapable.  Despite my certainty that fatigue was a result of my MF, I now felt my fatigue could be a symptom of something else altogether, something that might be treated and ended. One disorder that would respond to all that activity, socialization, engagement and exercise is dysthymia.   

_____________________________________________________________________

DYS-THYME-IA  (diss-THIGH-mee-a):  Mild, chronic and depression,  similar but less intense symptoms, often lasting for long periods of time.  Fatigue and loss of energy daily a common symptom.  Chronic illness, medication, and stress believed to increase chances of onset. ICD 300.4

______________________________________________________________________

The choice of a suspect disease is obvious. And problematical.

Most of the classic symptoms of clinical depression map directly to the symptoms of (BCR)  Blood Cancer-Related fatigue.

The NIH list of Symptoms of Depression could easily be used to describe BCR Fatigue:  Loss of interest in activities once enjoyable, feeling tired all the time, difficulty concentrating, remembering details, making decisions, difficulty falling asleep or staying asleep or sleeping all the time. Overeating or loss of appetite. The Leukemia and Lymphoma Society lists similar symptoms of BCR fatigue:  Cancer and its therapies are known to be commonly associated with clinical depression.

Depression, however, continues to carry a stigma in society not borne by other diseases.  Despite its widespread occurrence and the body of scientific knowledge about the molecular, biochemical, social, emotional and genetic basis for various manifestations of depression, it continues to be associated with shame, failure of will, inability to cope, weakness … with serious implications for self-image, relationships and careers.  That stigma is a barrier to treatment. 

There are highly effective means of treating depression, and its resulting fatigue, through talk therapy, medication, biofeedback, mindfulness training and other modalities.  But before we can tap into those means, we have to focus on the whole patient, understand the pain, stress, and anxiety created by our blood cancer.  After that, it should not be difficult to ease the path to therapy if multivalent treatment is proven effective through controlled clinical trial.

The first obstacle is to get past the name.  It shouldn’t be difficult. For example, my daughter will be cured of Asperger’s Syndrome in May, 2013 with the stroke of a pen. That’s the date the new DSM-9 takes effect, redefining Asperger’s as part of Autism Spectrum Disorder.  A change in name only, maybe, but it opens a world of therapy. Which is what happened when we traded in our dented old MPD for MPN a few years back.  A reasonable alternative might be Blood Cancer Related Dysthymia.   (A primary symptom of BCR-Dysthymia, as other depressive states, is pervasive fatigue.)

I don’t know if my fatigue is due to depression, dysthymia or something else entirely. But I do know fatigue is taking a severe toll on my life and work with no relief in sight.  My symptoms don’t conform to full blown depression since I’m pretty jolly and optimistic but do approximate dysthymia (ICD 300.4) closely enough for me to try a therapeutic path in that direction.  I’ll talk to my doctor about it.

Conclusion:  By and large, MPN fatigue is considered idiopathic and untreatable. By considering fatigue as a common symptom of MPNs and other blood cancers and not a serious and independent disease, a co-morbidity that could respond to treatment, we might be missing an opportunity to deal effectively with this “most common and debilitating” effect of myeloproliferative neoplasm.

finger pointing smallThe Fatigue Project is an opportunity for you to have your voice heard in determining future treatment protocols for MPN-related fatigue. Dr. Ruben Mesa and others have offered to help us evaluate alternative means to alleviate MPN-related Fatigue.  To volunteer to participate in a future study or clinical trial in this area — or simply to receive additional information on The Fatigue Project — send a blank e-mail to ourMPNforum@gmail.com  and put Fatigue Project in the subject line.  Your identity will be held in confidence

 
Take me back to the Contents

© Zhenya Senyak and MPNforum.com, 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Zhenya Senyak and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "The Missing Patient." (21)

  1. Working as I do in a place where the average age is 68, I recognise the comment that everyone around you has some ailment or other. Many of my colleagues have serious or life-threatening diseases, and I think that fatigue is age-related, irrespective of the general state of health. Atherosclerosis and arthritis, which are also age-related, prevent many elderly people from taking the exercise which could alleviate their fatigue.

    I was diagnosed with MPN August 5, 2011 following bone marrow trephine, see the following, subsequently narrowed down to MF:

    FBC: Hb 9.8g/dl, WBC4.8x 10*9/1, platelets 794x I0A9/L, neutrophils 2.24x J0A9/L

    Current medication: Bisoprolol, Ramipril, Amlopidine, Furosemide, Atorvastatin, Aspirin 75 mg od, Omeprazole 20 mg od

    I reviewed A today in the clinic with his wife. His most recent bone marrow confirms that underlying haematological diagnosis is the cause of his thrombocytosis. He has a C-MPL mutation which is associated with myeloproliferative disorders and in view of his other vascular disorders and risk of TIA, I have suggested to him that we start some hydroxycarbamide. In the first instance, I would like to start him on a dose of 500 mg od. I have explained to him that the side effect profile of this is fairly negligible, but that in some patients we can see rapid reduction in the platelet count. I think, as he is due to go on holiday for ten days, we will see him immediately on his return and may at that stage increase the dose to 1 g od.

    Since then I have carried on working normally except I no longer travel to developing countries as I did formerly as part of my work. I have had no symptoms apart from tiredness but I do wonder if this is an effect of advancing age (dob Sep 29, 1928) rather than MF

  2. laree treece said:

    thank you zhen you are my voice

  3. All the above!!! Thanks Zhen!

  4. A great read which although I have skimmed will refer back to and pass onto other sufferers!! I definitely agree with the computer based work, I feel more fatigued sitting down in front of one with the bright lights of an office environment it is even worse than I do standing up and massaging my clients in the clinic I also work in.. I also believe exercise does help it is just sometimes the hardest thing is to do that exercise!! Thank you for this Zhen

  5. Zhen, But once again you amaze me with your wordsmithing, your knowledge, your compassion, your insights, and your ability to explain compex issues in an understandable manner. I know from our exchanges that often you write, edit, produce and oversee production by yourself fighting through your own fogs of exhaustion. Kudos to you for your tenacity not only in writing strikingly powerful and meaningful articles such as this one, but for being the central glue for the MPNForum. May you continue your work and may you be able to do so with less fatigue.

    • Simply because these Comments can be viewed publicly – and when we publish next Tuesday this article will be seen by several thousand people – I can’t let my good friend Harvey Gould’s remarks go unchallenged.

      Of course he’s right about compassion, brilliance and all that other stuff… although he could have mentioned my extreme good looks and curly blond hair of yesteryear – but he’s been led astray by my e-mail whining. No simpering, false modesty, here. I am tired as hell, way too often, and work through it when I can and, ultimately I am the glue or some similarly sticky substance that holds the MPNforum together, mostly.

      BUT there are so many of us involved in this project I couldn’t start naming all: Certainly Ellen Jacquardt who handles the List of Hematologists and proofreads all the long, hard stuff if I can get it to her in time…Mary Morochnick who forwards all Clinic responses to our friends who asked the questions… the clinic doctors themselves, Verstovsek, Silver, Mesa, Harrison, Gotlib, Orazi and Levine, titans of Hematology who despite intense schedules faithfully respond to us in these pages. And then there’s all the brilliant writers, more than two dozen, photographers, the artists whose work we may have inadvertently swiped, the Editorial Board Members and our Facebook administrators , there are programmers who have helped with bits of code and workarounds.

      Finally there are those who are both writers and personal friends who have been here with the Forum from the beginning, Arch and Jeremy and even Harvey (a few steps late for opening night) without whom we wouldn’t be reading this issue.

      Thank you all. There’s a lot to report. As our newest writer said in this issue, much is happening in science and we all have reason for optimism. Honestly, the Forum is not about me or any individual. It’s about us and our common struggle to empower one another, to live with a nasty disease.

  6. In a recent discussion regarding symptoms with my haematologist (I have post ET MF) she glibly threw away my most debilitating symptom with “yes you are tired but……” At first I was a bit annoyed at that response but came to realise that unless you have experienced the “glue in the viens” or “hitting the wall”, as others have described it, it is difficult to appreciate just exactly how bad it can really feel. It’s not the haematoloists’ fault that they currently have little to offer to alleviate this symptom so it is easier for them to brush it under the carpet and not deal with it. We expect our doctors to have all the answers and they know that that is what is expected of them too. Some are able to freely admit that they don’t have all the answers – an attitude I much prefer – and some just ignore the issues they can’t fix.
    Bringing fatigue to the forefront for discussion and finding some way to evaluate it – although how that can be done objectively is beyond me! – has to be a good thing and maybe lead to a way of controlling what is to many of us the most distressing sympom we live with on a daily basis. I for one will willingly partake in any research programme surrounding this issue. Thanks, Zhen, for so eloquently putting your finger on the button.
    Jan N

  7. Jan, you are so right. We look okay amd smile. Everyone else thinks that nothing is wrong and we really feel so awful….I told my dr. That fatigue was a major factor and bone pain. They don’t really have a clue to Our REALITY.

  8. Jan Smith said:

    Zhen – you are a master with words. You so often reflect in your words my own feelings about having an MPN. Thank you. Fatigue is complicated in MPN’s – I am sure of it. As a clinical social worker by profession I know there are times that I teeter on the edge of depression but this does not always coincide with the extreme fatigue or “hitting the wall” and finding myself so very suddenly without energy. The fatigue has meant early retirement for me, without pension, but I have somehow found a way to not really care anymore about finances.

    Most of us look just fine so others do not usually understand how we feel and because not much changes quickly for most of us we hang in that limbo of having a diagnosis but not having a clear treatment outcome that we work towards. We will never get better and this is extremely hard to cope with day after day. I, too, have periods of wonderful energy but then the fatigue will come back and I hang on tight through it to get to the other side again. I suspect many of us “rise to the occasion” which of course supports the views of those who do not consider us to have a chronic, worsening illness which may take our lives in an undetermined period of time. Living in, and with limbo, is the most difficult thing. Sometimes I think I am mastering it but then can be brought back quickly to the reality that while nothing may change quickly for me, healthwise, it can also change on a dime and I really have no control over any of it. Lack of control in our disease process is huge for us all.

    Thanks

  9. It has been my experience that specialists cannot see the forest for the trees. If it takes a team of doctors to understand the whole human being, then so be it, but I suggest instead that medical professionals (and we ourselves) look at the functioning of the human body with new eyes.

    When I look at the people around me I rarely see anyone who is really well. Everyone it seems suffers from something. If the person in front of you doesn’t have cancer of some type, then someone in their family does. That tells me that there is something very wrong with our environment and diet and how we go about living on a daily basis.

  10. Elizabeth Goldstein said:

    Great article, Zhen, and you have have revealed the naked emperor when you mention that the patient seemed absent in the ASH conference. I eagerly read everything I could
    find about the conference and felt a strange sense of distance that I didn’t acknowledge
    until reading this article, perhaps because I didn’t understand what I felt until you put it in words for me. All of the comments about your article seem to confirm that fatigue is our most challenging symptom and the one that most hems, even the experts, seem to ignore. I think they care but they don’t want to talk about something they can’t fix and they have nothing to offer beyond the “exercise and eat right” prescription. I do that but it doesn’t prevent the days when I feel like glue is running through my veins. I agree that there is probably some dysthymia involved but have had that extreme fatigue hit me when on a vacation with my best friends and although I tried very hard to hide it, they saw it on my face and later said it frightened them. Hope your article catches someone’s attention
    and will be the catalyst for more research on the cause(s) of our fatigue as I am certain
    it is not completely a mental issue. Have no problem admitting that I might be a bit
    crazy (as Waylon Jennings said, “I’ve always been crazy but it’s kept me from going
    insane”) but I was crazy before getting ET and didn’t have this kind of fatigue then so
    I suspect that something else is in the picture, too.

  11. Thanks Zhen for your though-provocing article on the need for a new approach to MPN fatigue. For someone with MF and afflicted with frequent fatigue, you do a great job with all the work you put into rearching, writting and running MPNforum, so well done! Having PV I can well relate to the issue of fatigue. I usually put it down to being on IFN, having hypothyroidism, working outside the home in a busy professional role, being a mum and wife, going to bed too late/ trying to get more hours out of each day than I probably should etc etc. The confusing part is that dispite a pretty constant schedule, I have good days and bad days. When I am feeling good, I tend to be overly optimistic and think I have found a way the almost forget about my PV diagnosis. Then I have a tired, achy day and I’m reminded of my PVs pervasive presence again. Your concept of fatigue being a reaction to having an MPN and all the stress and worry that it entails, is a very interesting one. I look forward to taking part in the up coming study on fatigue. kind regards…..Nathalie

  12. jsandresen1 said:

    Well said Zhen,

    As each year begins I am reminded of the hope a New Year brings to all of us. We look forward to a fresh start, better days and hope that a new discovery or cure will arrive this year. And as each MPN Research Panel and ASH Symposium arrives and passes I am left with a single thought. What about us the patient? The MPN Researchers release their papers and pontificate about medical breakthroughs there is one voice in this audience whose left wondering to oneself “What about me”. Yet not a single panel dedicated to the main character of the MPN story, the Patient.
    The patient is the most important character in this story because without us there are no Rock Stars of Hematology and Oncology. We often worship our Doctors in a sometimes fanatical like state but whose always left in the waiting room counting the minutes creep by? The Patient.
    If there was true patient empowerment many hematologists would understand when an MPN patient sits in the waiting room at the end of the exam table pouring his or her heart out about the horrible death grip fatigue has brought down upon their lives a compassionate understanding Doctor would say two words. “I understand.” But most often its greeted with no answer as if the patient had not uttered a single word. For the past fifteen years when I have shared with a hematologist the benefits of exercise and diet for MPN Patients just two, Doctor’s Mesa and Silver engaged in a long engaging conversation with me about the subject. Actually sharing the same interest and excitement that I demonstrated when presenting the subject to them. .
    2013 must be the year when we the Patient come together and demand our voice is heard everywhere. From the doctors office to ASH and every MPN Panel . Supports groups should not be the place MPN patients go to hide so the Doctors can be shielded from having to deal with our issues. This is what they get paid to do and its time their organizations show us the same respect we show them.

  13. Jan Creed said:

    Great article. For me, you are so right. My fatigue comes and goes with my moods, I now believe. Our disease is so frustrating. I’m tired all the time…and am I tired all the time because of depression or am I depressed because I feel to tire to motivate myself. Then every so often something comes along that lifts my spirits and I have a good time…really get into it….but then it’s back to the same thing….fatigue. I feel so misunderstood with my friends and doctors. Thanks for sharing, Zhen.

  14. Fatigue was how I knew something was wrong with me. I had a high platelet count for several years but at work I would feel as if I couldn’t hold my head up. All I wanted to do was sleep and rest and that’s when I went back to the Dr. and she started my blood work and eventually to my hematologist. I had depression many years before any diagnosis of ET so for me fatigue was a signal that something was not right. I use to be a high energy person that could work up a storm and come home and keep going. I’ve filled out an application for a job I really would like but because of my extreme fatigue I don’t know if I should even send it in. I’m afraid I wouldn’t be able to make it through an entire day.

  15. Excellent article and filled with wonderful information. Thanks for being on top of everything and researching for us.

  16. Remember when you were first diagnosed?
    This poem won the 2012 Mc Llelan Poetry Prize . (UK)
    Regards,
    Davnet Heery.

    DIAGNOSIS
    after Raymond Carver

    He said it was life threatening and incurable
    he said it was advanced
    then looking at me looking at him
    he paused a bit and he said
    it can be managed with drugs
    oral chemotherapy he said
    there are the usual side effects of course
    and that’s when I said can you write it down
    not having grasped what it was
    this disease I had and he did
    on a slip of office note-pad from his desk
    he handed it to me and
    I looked at it
    this word I’d never seen before or heard before
    and I folded the slip between my fingers
    and I put it in my purse
    like a receipt from a cash machine that told me
    how much credit I had left.

  17. Pat Hensley said:

    very good article. Fatigue is a major concern to all of us

    • Kathy Van Meter said:

      I learned a long time ago that my Mayo doc, while completely competent, doesn’t really want to hear the answers from me related to non-medical pieces of my MPN. You know, sort of like when someone asks, “how you doing” and it’s just a thing to say. We discuss numbers and treatment. I have accepted that I am in charge of my whole wellbeing and seek out others to join Team Kathy as needed. Thank you for sharing your feelings and opinions with us, Zhen.

  18. Zhen, That was excellent. I appreciate everything you are doing.

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