6th International Symposium on Myeloproliferative Diseases
Wednesday, November 2, 2011, New York City
The Cancer Research & Treatment Fund (CR&T) will co-host with MPN Research Foundation, the 6th International Patient Symposium for individuals with myeloproliferative diseases. Sponsors of this event include: SASS Foundation, Incyte, YM Biosciences, SBio and Geron.
Patients attending this symposium will learn the latest research developments and treatment practices from a panel of distinguished MPD researchers and physicians.
Program Chair: Dr. Richard T. Silver, Weill Cornell Medical Center, Chair, Patient Committee . David Boule, CR&T
Speakers:
Dr. Tiziano Barbui, Ospedali Riuniti di Bergamo
David Boule, CR&T and MPN Research Foundation Board Member
Dr. Sergio Giralt, Memorial Sloan Kettering Cancer Center
Dr. Ronald Hoffman, Mount Sinai Medical Center
Dr. Ruben Mesa, Mayo Clinic
Robert Rosen, Chairman, MPN Research Foundation
Dr. Richard T. Silver, Weill Cornell Medical Center
Dr. Jerry Spivak, Johns Hopkins University Hospital
Dr. Srdan Verstovsek, MD Anderson Cancer Center
Dr. Babette Weksler, Weill Cornell Medical Center
Information: Michael Wargo, V-P Development, CR&T: 212.288.6604
As an MPN patient our lives are similar to the crew of the Starship Enterprise. We are on a journey to “boldly go where no man has gone before.” It’s the reason you search the Internet, are part of MPN lists and why you have joined us here at MPNforum. We seek information, answers to questions our doctors just cannot answer for us.
In the World of living with an MPN we all at some point must deal with fatigue. The medical community does not know exactly why fatigue plays such a debilitating role in MPN’s or Cancer. MPN’s are very complex and there is little clinical data to help doctors understand fatigue.
Fatigue is defined as a daily lack of energy unusual or excessive whole-body tiredness, not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from 1 month to 6 months or in the worst cases even longer). Fatigue can have a profound negative impact paralyzing a person’s ability to function.
There are of course hematologists who still refuse to recognize fatigue being related to an MPN sin spite of overwhelmingly patient support to the contrary. When you don’t have recognized conclusive scientific data doctors lean towards discarding patient feedback. Complicating the situation further is other conditions such as depression; anemia, stress and lack of sleep are all linked to causes of fatigue. Since these conditions have scientific data to support their existence along with readily available pharmaceutical solutions for treatment these types of patient “complaints” are treatable and a doctor will listen to you all day.
After having just been diagnosed with an MPN who wouldn’t suffer from some depression, anger, stress or lack of sleep? I know I did for quite some time; it was a shock to my entire system. I felt sorry for myself and was deeply depressed. My fatigue came in waves and I often slept in until noon on weekends when I could. Even dosed off in office meetings, sometimes taking naps in my office when I could steal some time. I was scared and so consumed with my diagnosis and pending death. It led to horrible anxiety attacks that forced me to rush in to emergency rooms on weekends and constant after-hours calls to my doctors.
There were times my fatigue was so heavy I thought I would collapse and not wake up. Then there were times I wished this is how I would die. It would be calm and simple. My life would end and so would all the pain I was feeling from being diagnosed and the fatigue, it would be gone as well.
For twenty plus years I have told my hematologist and his staff that exercise and nutrition, especially a hard-core cardiovascular exercise program can eliminate fatigue. In spite of being told on more than one occasion by my doctors they do not understand why I am still here with such an aggressive Polycythemia Vera or why I am fatigue free. I get the we don’t have the data to support your claim regarding exercise lets move on.
But I will never give up on this subject because I am not just passionate about I know I am hot onto something. I know if I skip my exercise program as I have at times when I am traveling for business for extended periods of time, within three to four weeks fatigue slowly creeps its way back in to my life.
While none of my hard work can repair my bone marrow or stop my PV from progressing if that is what is in store for me. For most of us with PV we can at the very least significantly reduce the impact fatigue has on our quality of life. As I mentioned in my MPN Life June column “Thinking outside the box” by introducing new nutritional and cardiovascular exercise changes my life I have had a profound improvement in the quality of my life. I have reprogramed my mind and body to focus on making my body whole again.
The question you must ask yourself is how badly do you want to improve the quality of your life?
Do you think I enjoy getting up some mornings at 5:30 AM to make my way to the gym to start my workouts or laps in the pool? After a long day at the office there are many times I want to go home and not ride my bike but I always go back to where I used to be and I am not going back there.
All I can do. All any of us can do is take control of what we have control over and go for it! This battle we are in is for life and I don’t know about you but I love my live and the people in it so much I will do whatever it takes to give me an edge. If you can do that I guarantee you will dramatically improve the quality of your life and for many of us its worth it.
CRAWL. WALK. RUN.
We are all creatures of habit. Which makes starting something, breaking bad habits and creating lifestyle changes all the more challenging. These are the obstacles one must over come to have a fighting chance of conquering fatigue.
I recently read a study that tracked how long it takes to truly change one’s life when integrating exercise as a lifestyle chang. It takes ninety days of continual work before it becomes a regular part of ones life. People who exercise five days a week or more have the highest rates of success. Any less than that and the rate at which people find reasons to skip exercising increase dramatically.
Hey I heard what you are thinking! And yes can make the time to do this! I understand even though we are talking about dramatically improving the quality of ones life people naturally find reasons not to begin or continue focusing on change.” I have also heard. “I am too busy, its hard work; I am tired, can’t turn off the TV tonight a Twilight Zone Marathon is on.” Or for you folks in theUK“an EastEnders Marathon starts tonight.” So today become tomorrow. Tomorrow becomes next week. Next week becomes next month and then next year. I will have none of that. I understand all of this because I at one point used many of those same excuses.
WELCOME TO PHASE ONE: CRAWL
If you are getting back to exercise for the very first time in quite a while there will be some challenges at times. Some phases and individual exercises will go better than others.
Rule# 1 always build setbacks, stops and starts in to your plan. They are normal and it be expected. These are not failures but require adjustments. You will cry or quit at times but you WILL get back up and keep Crawling.
Rule#2 Always consult your doctor before starting an exercise program. After having my Doctor sign off on my plan about six months in to it while reviewing my lab work he noticed an unusual increase in my white cell count. His first question to me. “Did I exercise this morning prior to my blood test?” I replied, “About an hour prior to the lab test I ran 5 miles.” Turns out when you exercise there can be an increase in your white cells. That is exactly what it turned out to be. That is why before you Crawl meet with your doctor.
Get your computer, smart phone, pen or paper and create an outline of your plan. Creating a schedule that includes a date and time for all your exercise activities is key to starting this off right and most importantly, keeping it going. For your first thirty days you will start with a five-day plan. What did you say? “A five-day plan is too much!” Well what if you start with a little as ten minutes a day for five days? I know you can find ten minutes each day to do something. This is ok in the Crawl stage.
So what type of exercise should you start out with in Crawl? Crawl is not about increasing or raising your intensity. In the Crawl phase we will not be able to reduce severe fatigue but you will be using Crawl to get back in to shape slowly and of course safely. The cardiovascular exercise you choose will depend on what you have access to and what you are capable of doing.
Remember you do not have to join a gym to do cardio work. Simple things like walking your Dog or even your neighbor’s dog can be part of your plan. In our July Issue of MPN Forum in my interview with Alison Scott she talked about something as simple as just walking up and down the stairs at her house.
When I started all I did for the first month was to sit on the edge of my pool and kick my legs in the water to start building up my leg muscles and increase my heart rate. You can start out doing the same thing in your bathtub and it actually works. Another place to limber up is the local supermarket. First of all if its hot outside most are air-conditioned so it’s a great place to go to anyway. And you can pick up some deliciously nutritional organic fruits and veggies while you are there. Hey if you are moving your body its exercise.
Don’t forget to have fun. You should never forget about your mental health as well. Bring music with you if you can and find a playlist you enjoy. Well that is the beginning of Crawl. Please email or post here at MPN Forum with your questions. And if you have registered here at the Forum first you can do the same thing at our Facebook page: ourmpnforum@groups.facebook.com In my September column I will cover WALK and RUN.
b Michael Goldstein About a year ago, the New York Times published a book review of “The Empowered Patient” by Elizabeth Cohen. Cohen, a CNN journalist, wrote about her personal experiences with medical crises and what she learned about the need to advocate for quality health care. Her book provides suggestions about how patients can prepare and advocate for themselves to increase their chances of getting the care that they, or a loved one, need.
In response to the NYT review, I wrote on my Facebook page about the role that clinicians can and should play to empower patients. My posting led to a lively discussion among some of my Facebook friends about the term, empowerment. Eleni Chambers, a member of MPN Forum and an international expert in self-management strategies, argued that clinicians can’t actually empower patients, just support or enable empowerment. Some patients, she noted, don’t want to be empowered, and others have serious barriers to empowerment (e.g., lack of access, low socioeconomic status) that can’t be easily addressed by clinicians.
I agree that many patients don’t want to be empowered. Published results of patient surveys indicate that a large proportion of patients prefer to receive information from their doctor rather than seek it out themselves and, although almost all patients want their doctors to ask their opinions, more than 50% of patients prefer that their doctor make final treatment decisions. However, I believe doctors and other clinicians can act in ways that increase the likelihood that patients will want to participate more actively in care.
Encouraging involvement in care is not just the right thing to do. Research studies have shown that patients who are offered choices and options are more likely to follow through with treatment, take prescribed medication and achieve better control of their chronic conditions. Patients who are encouraged to ask questions and prepare for their visits are not only more satisfied with their care, they actually achieve better health outcomes.
When I was still treating patients, I provided patients with options for tests, procedures and treatments and encouraged patients to make decisions based on their preferences. Though I was willing to offer my opinion about what might work best for them, I needed to know my patients’ values and what mattered most to them. Some of my patients wanted to have their conditions treated as aggressively as possible to control symptoms and reduce the risk of complications, while others preferred to limit treatments because of concerns about the short and long-term effects of the treatments themselves. Some have referred to this process as shared, or informed, decision making. Unfortunately, research has shown that most physicians infrequently devote the time and effort required to meet criteria for informed decisions. Moreover, when I gave my patients choices, many folks opted to try “non-medical” strategies, such as diet, exercise and stress management before embarking on medication management.
I actively encouraged patients to use these “self-management” strategies even when they decided to take medication, as these behavioral strategies have benefits beyond their direct impact on chronic conditions. Patients who learn to use self-management strategies became more confident and self-reliant and this, in turn, increases their feelings of well-being and satisfaction. Moreover, people who exercise and eat wisely have reduced risk for other conditions, such as diabetes and heart disease and even some cancers.
I agree, however, that there are limits to what I as a clinician can do to empower my patients. I can’t empower a person who doesn’t want to be empowered, and I can’t overcome barriers that neither I nor the patient have direct control over, such as low socio-economic status and limited access to a safe environment. Despite these limitations, I remain committed to helping clinicians to empower, prepare and activate their patients by offering tools, resources and referrals to programs that address and support “self-management”. I encourage you to seek clinicians who share this view, and/or seek resources and programs outside mainstream medical care that provide the opportunity to become more empowered. MPN Forum is one such resource, thanks to many of you. I am proud to be both a contributor and user of MPN Forum. For other resources, see the New Health Partnerships website – http://www.newhealthpartnerships.org/ or the Prepared Patient Forum, cited in last month’s column.
Except for Patricia Wagner’s excellent report on The Mind – Body Connection, there hasn’t been much attention paid to the connections
between healthy minds and healthy bodies in MPNforum as yet. There are ever increasing numbers of people, world wide, who are turning to these approaches either as supplements to or as significant parts of (some would say “instead of”) traditional science based allopathic medicine. Actually “traditional” is a misnomer as many of our present alternative
ideas are much older. In a gentler time when I began practice, I thought that I knew all the
methods and ground rules for curing, controlling and preventing disease.
Now I am on the sidelines as an observer of the current landscape in
doctoring and being doctored. The issues have multiplied and changed and
serious debate and discussion is commonplace. They have become so
complicated and emotionally charged that I hesitate to take a position.
Of course, y’all know I will. Fools rush in, but what one fool can
learn, another can.
Are approaches not based on current science and evidence-based medicine
being afforded their rightful place in our hospitals and out patient health care systems? I hear a lot about this happening, but I don’t see much of it in my world. My personal medical care is pretty much business as usual although the medicine of today is said to incorporate several philosophical concepts of health and disease. Refill your cups and let’s laugh and scratch together while we consider one approach; the previously mentioned mind-body connection as espoused by Patricia Wagner in the MPNforum. I’ll begin with the musings
of a retired MD. I’ve invited Mrs. Wagner to join our corner, hoping she
will add further information and comment and suggest corrections. I
enjoyed Patricia’s article in the July issue of MPNforum and reread it
with interest and determination. You will find it worthwhile to review
it and her current offering in this issue as well. I’m sure we all want to learn more with open minds. Admittedly that’s
difficult with the monolithic bias of this elderly self confident,
no-nonsense internist from another era hoping to find some practical
cash value in her concepts. Regarding the ‘mind-marrow connection’, I
believe in miracles, but I depend on CBCs. That it was a bit of a
struggle to understand what she was trying to have me understand
suggests, as with any philosophy, it takes study and contemplation and
likely reflects my narrow world view rather than her interpretation of
the inexplicable.
I am not shooting the messenger here. What, me! disagree with a blue
eyed lady with strong opinions backed up by study and intelligence
worthy of a national (PBS) platform? As Mrs.Wagner clearly wrote, she is
not the subject of her article. As a MD and MPN caretaker, I am sincere
with no hidden agendum in believing that her position is that of a
reasonable and caring individual. She seems to have a ’cause,’
a valid one I think, and she surely has all the credentials for
writing to a MPN magazine. I haven’t viewed her video or seen her PBS
program yet so Patricia’s message did “startle (my) closed eyes”, but I
wasn’t dismayed.
As with most physicians, I considered the mind-body connection as a causal relationship between psyche and soma more ruled by the laws of physics and chemistry than by the mysteries of mind and miracle. The ‘whats’ and ‘whys’ weren’t satisfactorily explained by the science of my teachers learned from their teachers passed down from their teachers and so on with rarely a seriously different look.
Only after leaving practice and becoming a patient with time and inclination to think outside the profession did I truly acknowledge and accept the importance of the mysterious and emotional in clinical medicine. I’ve seen it verified over and over, but my ‘scientific’
training is deeply ingrained. Am I really convinced or am I paying lip
service? I wonder.
Patricia’s stated subject was: “A mysterious (to some) field of our
creative visualization as divine children of divine parents.” Although
couched in references to the mysterious it seems a paradigm for a
religious or a theosophical alternative to secular medicine. If so she
presents a strong case.
Her subject seemed (again to me) to be presented in a mildly defensive
and slightly proselytizing manner, seemingly unnecessary for the open
and inquisitive minds of our readers. I don’t see logic, statistical
proof, and the scientific method as enemies of the mysterious and
unexplained. Instead I see them as method and process in attempts to
learn and explain the unknown for practical use. Perhaps this construct
is too rigid and narrow and doesn’t give the emotional and mysterious
their due and proper place as healing entities. Yes, I am writing beyond my competence with an obvious absence of comprehension, much less wisdom. However, who can umpire in games between mystery and logic? So if I’ll just shut up for once, perhaps
you all can elevate this conversation. I’m glad Patricia presented this
subject with her firm belief in its verity backed up with personal
experience. It deserves further careful consideration by open minded
people. I hope she will continue to enlighten us about her mind-body
philosophy. How about some of you pitching in with your take? Don’t be
hesitant, there’s no rule book for miracles. When it comes to
thaumaturgy (ok, I looked it up) your guess is as good as anyone’s.
I’ll end my musing about this matter of the mind – body connection witha quote from Mark Twain. “If you don’t mind, it doesn’t matter”.
Last month, scientists and physicians gathered in Chicago to hear the official results of the so-called COMFORT (controlled myelofibrosis oral JAK inhibitor trial) trials. These were the Phase III double blind trials of a new myelofibrosis drug. The proof was indisputable. In most cases, the drug, Ruxolitinib, dramatically and quickly reduced spleen size and improved the quality of life of myelofibrosis patients, many of whom were condemned to increased suffering before death.
Three and a half years earlier, there was a much more risky undertaking, a Phase I/II clinical trial in which varying dosages of a drug simply labelled “Incyte — Chemotherapy Drug” was given to people desperately ill with MF. One of the participants in that trial, Barbara Beckman, continues to make MPN history. Three and a half years later, still on Ruxo, she is carefully studied to see the long-term effects of the drug on quality of life and life extension. Here is her story.
My Incyte
by Barbara Beckman
It’s July 19, 2011. I looked down at the paper in my hand. For the first time in over 3 ½ years there are no highs or lows by my blood counts. The counts are all in the normal range. My recent bone marrow biopsy was not so optimistic: MF-3 (Persistent).
Under additional findings, I read: Marrow architectural distortion marked; Osteosclerosis: diffuse with bony remodeling;Vascular sinuses dilated; Intrasinusoidal hematopoiesis. I feel better but myelofibrosis is still with me,
In 1993 I had emergency gallbladder surgery. It was then that the doctors discovered I had something wrong with my blood, and they wanted me to see a specialist. The specialist did a bone marrow biopsy and diagnosed essential thrombocythemia. My platelets were over a million, but the rest of my counts were OK. He prescribed Hydrea, which I took for about 10 years.
In 1996 we decided to move back to Idaho fromWashington,in order to be closer to family. (My high school age grandsons were basketball stars and my husband, Don, just had to be there!) No hematologists there but an internist kept track of my blood counts, continued my prescription for Hydrea and I felt okay. However, I was slowly losing weight (hooray!) and through the years I lost my plumpness, and I loved it.
In the meantime I developed a painful ankle ulcer. I belonged to a MPD group online and learned that HU might be the cause, and I stopped taking it . The ulcer healed, but came back when I took HU again. Well, okay, I just didn’t take HU anymore. I buried my head in the sand and tried to think I didn’t have a blood disorder.
We moved back toWashington for my husband’s work. I found another hematologist who let me get by without taking anything. I was getting much more tired, and the weight kept falling off. I had lost 60 pounds. I told my husband that my arms looked like the bone was a curtain rod and my skin was draped over it. It was UGLY!
I insisted that my doctor do a bone marrow biopsy, and the diagnosis came back MF. Luckily I found a MPD group that met in Seattle. This group meets several times a year, mostly to be able to share information and receive support from people who understand. The speaker at the first meeting I attended was someone who was enrolled in a trial in Houston, and was doing well. I talked to her after she spoke. She told me that I needed to try to get into that trial. (Thanks so much, Lois.) http://health.groups.yahoo.com/group/MPDSeattleSupport/
I was able to get an appointment for a consultation with Dr. Verstovsek in Houston. Dr. V told me that there was a trial for a new medication for MF. It was sponsored by Incyte . Some of the criteria for the trial were a large spleen and a white count less than 30. My spleen was large and my white count was 29. He said I could join the trial and I jumped at the chance.
Within the first week I could tell that my spleen was smaller. I seemed to have no side effects, even though I was taking a large dose: two 25mg pills a day. The dry cough that troubled me at night went away. They told me that this medication was not a cure, but was palliative only. That was okay with me—I was desperate to feel better. As time went on I gained weight and felt stronger. (Now I would like to lose a little weight! Dr. V says walk).
I have been on this trial for over 3 ½ years. I did get a little anemic, but it seemed to regulate itself after a while. The first two BMB’s were terribly painful, even though they were done by a beautiful girl who was a student supervised by a teacher. I hope that girl becomes a model and not a medical person! The rest have been done by competent techs and not bad at all. Lidocaine has been the only anesthetic.
Flying to Houston from Seattle isn’t really fun, but Continental has a medical rate, and a through flight. Now I only have to go to Houston every six months. I don’t know what will happen once this drug is approved, but I will cross that bridge when I come to it.
I am a retired teacher, a reader, and a dedicated gardener. My flowers always get lots of compliments and I am able to take care of them. I am also 77 years old. I would like to live to see my great-grandchildren grow up. Did I tell you how wonderful they are?
I have lived longer than I ever thought I would. I have quite a bit of pain in my legs, but I am able to take some painkillers that help. Last time I was inHouston, the lady who cut my hair gave me a cross-stitched cross that she had made, and there was a beautiful encouraging note with it. I didn’t even tell her that I was sick!
And then today a lady gave me a little pewter angel.
Alan Caruthers has already been through one crisis this year. His myelofibrosis worsened resulting in a greatly enlarged spleen. Complications from his splenectomy at MD Anderson Cancer Center were life threatening. Tomorrow, he starts chemo in preparation for the only cure available to us: stem cell transplant. To help us keep him and his family in mind during this dangerous and hopeful time, MPNforum asked if he would like to put together some journal of these days. He tried, but his pain and fatigue and concerns over his young family have proven overwhelming for now.
To help those of us who have not yet met Alan, we’ve enlisted the aid of Bonnie Evans whose blog included an April visit to Alan at MDCC.
“I checked Joe into the Radiology Lab and answered the usual questionnaire for him. Joe would be there for hours with prepping for the exam by drinking the dreaded enhanced fortified “milk shakes.” Joe knew that I wanted to go see one of our Myelofibrosis friends, Alan Caruthers, who had his massive 38 cm spleen removed three weeks ago. Alan was only supposed to be in the hospital for a week. Joe was concerned about me getting upset when I saw Alan. So what, if I get upset, I will get over it but Alan needed to know that people cared about him and his dear caregiver wife, Laura.
I headed back across the street and up to the fifth floor in the purple wing where Alan was. Before I went up the elevator, I stopped by the gift shop to get a little something. I bought them a multi-colored Tiffany Nightlight that had the word HOPE on it. During out previous stay I had purchased one for Joe and me since I was so fond of it. I have it located in our guest bathroom downstairs. We all needed HOPE for a cure. I also bought one of those small Whitman Chocolate candy boxes since we all know that chocolate makes one feel better. Right?
I lightly tapped on Alan’s door and opened it. He had a big smile when he saw me and told me to come in even though he was consulting with one of his doctors. His coloring looked good. He still has all his hair and nicely trimmed beard. Unfortunately, Laura had gone shopping since she needed some time alone and give herself some TLC. Good for Laura! Laura has spent the entire three weeks staying with Alan and sleeping in the same room as he.
Alan stated that Laura slept pretty well but he had a very difficult time sleeping because of high anxiety and fear. He had come close to dying several times in the last three weeks. His internal organs that had been smashed by his massive 20 pound spleen had trouble working. He has massive amounts of fluid buildup in his abdomen where the spleen used to be. The medical staff had to insert a drainage tube and the amount of fluid that drained out was massive. He has a feeding tube since he could not hold down food. He said that he was so sick. Today was the first day that he was allowed to drink clear fluids and he had eaten the best Jell-O ever.
We were able to laugh and pray together thanking God for Alan still being here, thanking God for MDACC and their amazing compassionate staff and brilliant doctors. We prayed for Alan to be healed well enough to go home at the end of the week if he continued to improve. We prayed for Laura and her health and wellbeing. Laura had pictures of their newly handsome adopted son and family members on the wall as well as messages of HOPE, FAITH and LOVE. I gave him our gifts.
How appropriate was the night light with the word HOPE on it! God works in so many ways that shows his amazing love of us all. Both Alan and Laura miss their son so much. He is being well cared for by Laura’s Mom back home inWacobut they talk with each other every day. I told Alan that he has been in the prayers and thoughts of everyone in the MPD/MPN.”
. It’s a love story of two people who meet at a difficult time and over time come closer together. We first met them here, or somewhere on the MPN Internet. We always see them hrough Bonnie’s eyes her vivid blogs of travel to Venice and Africa, on cruise ships to South America and South Pacific. We read reports of their dining at exotic restaurants, of passports and airline tickets and of Joe’s PV progression to MF
We follow them through emergency rooms and clinical trials, read frightening reports of complications and share glimmers of hope. Now, Joe, is back, on Bonnie’s arm, and our hopes rise for his recovery.
But Bonnie and Joe have a life apart from MPNs. They met on a dance floor and their dance goes on. Now that Bonnie is sharing their early days, we can see them not only as patient and caregiver but as they are in full, lovers still, engaged in a human, loving dance.
A Love Story
By Bonnie Evans
The beginning – from Keflavik to Atlanta
April Fool’s Day 1975 was the day I arrived in Atlanta with my two toddlers to start my life as a single Mom and look for new career to support them.
Roy, my husband, was being released from the US Navy after serving the last three years in Keflavik, Iceland as a Naval Aviator. Before we could divorce, I needed to find employment. It took me seven months to finally secure a stable position with advancement opportunities. It wasn’t long after that I met Joe,
Disco was king when Joe and I shared a slow dance at Earl’s Place in Atlanta. October 1975. He was a tall good looking guy wearing a polyester leisure suit that was the fad at that time. My first husband lined me up to go out on the town with one of his girlfriends since I knew no one in Atlanta. Joe and I had no conversation during the dance so I thought that was it.
Joe called me up the next day to go see a movie. I rolled my eyes when he drove up in a red Corvette convertible. I thought this guy had to be a player and was very much into himself. I nixed his suggestion to see a Charles Bronson movie since I was not a fan of Bronson’s violent shoot’em up films. No problem, Joe said, we could see something else. I have no recollection what that movie was but I was impressed that he was accommodating. He asked lots of questions about me and said very little about himself. His voice had a very deep Southern nasal tone to it that was very seductive. He was self assured but not cocky. My first impressions were all wrong.
A black and gold velvet couch
Later on in the evening he took me to his townhome which he had recently purchased. It was very nice. He had a huge, hideous black and gold velvet couch which was very well used by the two of us over the years. We must have spoke for hours before he made his aggressive move. Wow, I was swept off my feet. I felt attractive and sexy with this guy, something that was very much lacking in my marriage. So, it was the sex that glued us together for years which was not that unusual for young adults raised in the sixties.
Two weeks later we went to a party thrown by one of his friends at work. I was sitting on Joe’s lap when he asked me to move in with him. I said, “Hey Bill, I am not ready to jump into any relationship.” Joe says,” My name is not Bill.” “Oh sure it is,” I say. Joe says, “My name is Joe.” After dating this man for two weeks, I was calling him the wrong name. Everyone laughed at our exchange but none harder than Joe and I. This guy was good natured and still wanted to date me.
I was hired as a manager trainee at Household Finance Corporation (HFC) . Joe thought that I would be so successful that I would want nothing to do with him. I have no idea why he ever thought that. My high stress career at HFC lasted until June 1996, just before the Atlanta Olympics. Through that whole time, Joe was very supportive when times were tough where I thought I could not take much more.
A year later
Over those years, I realized Joe was a keeper. My first clue happened early in our relationship.
On June 1, 1976 my youngest son, Mike, was 2 1/2 years old when he was seriously burned by hot tar in the parking lot where we lived. Some workmen were working repaving the blacktop. I had stopped by the grocery store before picking up the boys at KinderCare. Michael had messed up all the clothes he had at the daycare so he was only in his diapers.
In the past, Mike had always followed right behind me into the townhouse that was only a few feet away from where I was parked. I grabbed the groceries in both hands and rushed into the kitchen. I had just laid the bags on the counter when Keith came running in yelling, “Mommy, Mommy! Michael has hot tar all over him!”
It was literally only seconds that had passed and Mike had followed his brother over to where the pavers were working. He had stuck his entire left arm into the hot boiling tar and tried to wipe it on his leg and the top of his head. A workman was carrying Michael over to me by lifting him up under his arms. He was screaming and in great pain. Without thinking, I got my purse, called Joe to come to watch Keith, and rushed to Windy Hill Hospital.
I put Michael in the back seat of the bright yellow VW bug and drove to the hospital as fast as I could with my flashers on. I did not call 911 since I knew it would take too long and that minutes were essential. I made it to the ER in 10 minutes. I did not stop to register. I ran through the ER doors and smashed through the doors to the exam room without stopping. When Mike went into the operating room, the doctor told me that Mike had only a 50% chance of living through the surgery.
Joe had called my estranged spouse who came to the hospital with his girlfriend. Joe took care of Keith and made sure that someone at the apartment complex was watching him. Finally, the doctor came out to tell me that Mike was out of surgery and needed to be sent to Grady Memorial Hospital the next day to the Burn Unit.
I took the elevator up to the third floor to see Mike rolling down the corridor from the operating room. His face was swollen to twice its size and his arm was bandaged as if he had a large boxing glove on. As I stood in front of the elevator looking at Mike, I started to collapse to the floor. The elevator opens and there is Joe catching me before I hit the floor. He was my support and rock throughout those stressful weeks.
Sex, food and rock and roll
When we started dating, Joe’s idea of a good restaurant was Steak N Ale. I introduced him to fine dining and he was hooked. We dated nearly every Saturday night where we would go out to dinner and try new foods and wine. We never dated on Friday nights since that was singles night. He would go his way and I would go my way.
For many years we dated other people but we would come back to each other for the hot sex and good food. I also used to cook for him regularly and he loved my cooking. I was always coming up with a sensational dish to wow him through his stomach. The eating out in various restaurants continue to this day but that is how it all started.
Joe would know instinctively when I had been with someone else. He found that enticing for some reason. I found it amazing that he was not jealous or perhaps he just did not care about me. Sometimes when Joe was on the prowl and could not find anyone else, he would phone me very late with his seductive deep voice and ask me if I wanted some company. Hungry, Bonnie could not resist and always said come on over. Wonderful rolls in the hay!
The travel bug
We started taking little trips with the kids to North Carolina’s Fontana Village, Daytona Beach and to Panama City Beach. Imagine a never married guy agreeing to vacation with two little active boys. He did and was very patient but not all that attentive.
We both joined Atlanta Skylarks Travel Group some years later. Our first trip with them was a five day trip to Mazatlan, Mexico. We enjoyed walking on the beach, trying different restaurants, touring art galleries and flea markets. One night we went to a Mexican Fiesta and I had a bit too much tequila and got a hard loud case of the hiccups. The table of four next to us started telling jokes and I was rolling laughing and hiccupping at the same time. Joe said it was time to go in a voice than told me that he had enough. He held my glasses in his suit jacket for me. Funny thing is we both forget about it until a year later when he used that jacket once again.
HFC rewarded me with several Caribbean Cruises where Joe was my companion. He fell in love with cruising and was getting spoiled. Later on we took many trips, to Rio and the Amazon, to Africa and Europe, cruises and tours. We still do.
The way it was
So this is the beginning of our love story. I think I was way more in love than Joe. I was convinced he had no serious feelings for me. Joe and I dated seventeen years before we got married in 1992. My sister, Dolores, would make me promise not to go on “Oprah” and tell people that I was dating a man for seventeen years. I was a bad example to women.
In the later part of 1985 I had signed a contract on a condo that was being built in Stone Mountain. I decided that I needed to invest in a home since it was not anytime soon that a committed relationship would happen with Joe.
Joe proposed that we buy a home together in Stone Mountain. We looked for the right home for about six months that satisfied the both of us. We wrote up a contract between the both of us involving ownership of the home, maintenance as well as everyday living expenses. Except for the home we kept our investments, debts and checking separately. Joe moved into my apartment for a few months as we waited for the mortgage process to be completed.
An abnormal blood test
It is then when we found out that Joe had nighttime Gran Mal seizures.
It was terrifying to me. We finally committed to a life together and I thought was he was dying right then and there. I called 911 and he was rushed to the hospital. By the time we got there, he was coherent. They did more tests on Joe and the ER doctor gave me a copy of his blood tests with instructions for Joe to see his neurologist.
The neurologist looked at the blood test and said that Joe needed to see a hematologist and that his abnormal blood tests had nothing to do with his seizures.
.Bonnie takes charge
I started my research on the web. Joe always seems to have a very ruddy complexion. I self diagnosed him as having something called Polycythemia Vera. What I read ,terrified me . O my God, he is going to be dead in five years. What the heck was the spent phase which sounded even scarier?
Our first hematologist did a bone marrow the next day without anesthesia. I thought Joe was incredibly brave during the procedure where I was able to stand by and watch. In a week we went back to review the results and Joe’s prognosis. The doctor said that Joe did indeed have Polycythemia Vera. I nodded at Joe since I had shown him what I thought he had through my research. I was against Joe doing the Hydroxerea (HU) since I read that after ten years it could change into Leukemia. The doctor recommended Intron-A where he would receive injections each day and come into the office every several days to get a phlebotomy until his counts got under control.
Joe started with the Intron A injections which I gave him. He stuck with it for six months and hated the way he felt. He would come home from work and crash on the couch and sleep. He felt he had the flu all the time. Taking Tylenol before the injection did not relieve that feeling. He decided that he would rather take his 10% chance of getting Leukemia in ten years by taking Hydroxyurea than to be miserable with the Intron A.
Over the next 11 years, PV was under control as Joe took HU It was just the first of Joe’s MPNs that would soon take our lives on a different course.
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After Joe began to recover from his bout with Manlle Cell Lymphoma and was able to resume his MF treatment at M.D. Anderson, Bonnie posted a progress report on her Facebook page:
Bonnie Evans: Joe gained nearly 2 lbs from 165 to 167. Blood pressure low at 105/52. Waiting for blood results at Emory.
She got this response: “That is so good. But I sure don’t know if I could go through what Joe has to treat my MF. I’d say he was Superman!”
Bonnie Evans: You do what you gotta do. He is my hero!
As if it’s not enough to be sick with this damned disease and working too long to get the September issue out, right before Labor Day we ran into a buzzsaw. MPN-NET apparently got its knickers in a twist over our forthcoming profile of their enterprise in MPNforum, an article not yet published!
You have to respect Ian, Antje and Bob’s tenacity and dedication in providing high level MPN patient support every single day of the year. But that doesn’t mean we have to be blind to their occasional lapses. This tightly disciplined patient support site slipped badly by permitting wild accusations to spiral out of control and hit the list, publicly.
Here’s what happened:
In a private e-mail Bob Swanson, an MPN-NET manager, out of the blue, suggested Zhen may have taken money to write a favorable 23andMe article. Zhen responded, privately.
Matters escalated as Bob Niblack, CEO of MPN-NET, posted publicly on the MPN-NET digest that he was “offended by the personal attacks made on the list Managers,” although, as one MPN reader noted, no such attack ever took place Marcia Gilliam jumped in the following day on MPN-NET – again, publicly, to 3000+ subscribers — to claim responsibility for Swanson’s accusation…. although how anyone could know about it beyond list owners remains a mystery. ” I may be the one who triggered that,” she said. ” I wrote to one of them offline and asked if Zhen had a source of funds for his glossy new e-zine that seemed (to me) to be plumping for certain things. If I caused a problem with my request, I apologize, but I still do wonder if he’s getting dollars from somewhere to push an agenda.” MPN-NET published her comment immediately.
Zhen responded in a public posting which was published Sunday night before Labor Day in the MPN-NET digest…probably not prime time for the small screen. So does that mean there are lingering doubts in our MPN community that the MPNforum is uncorrupted? Credit is due to Antje and the boys for posting Zhen’s response and Molly’s analysis. It would be even better if the List managers would acknowledge there was something a little awry in publishing nasty calumnies and innuendoes without the slightest substantiation.
Short of that, we’ll take responsibility for clearing the record and maybe follow that by clearing the air with a little absurdity.
Here is the unvarnished, simple truth
Not one dime has been taken from any individual or organization to support or finance the operations of MPNforum or compensate or otherwise reward anyone. The idea that a corporation like Incyte or 23andMe would make such an offer or that Zhen or anyone on MPNforum would accept it is naïve and deeply repugnant. MPNforum is entirely produced from the brains, hearts and hands of MPN patients without a dime from any outside source. Operating expenses are covered by Zhen, personally and entirely.
(BTW, MPN-NET can’t make the same claim)
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And here is the varnished version for the MPN audience that likes its news hot….
This just in….
Zhen on the Take!
Exclusive Interview
MPD- NET exposes massive payola plot. So does MPN-NET. (Hey, MPD-NET got there first. )
23andMe reportedly paid billions for Zhen’s support of their DNA research initiative , sputters one speechless representative. “Trillions” says an assistant speechless representative.
Many are “spitless with shock.”
Secret photos from overseas banks….money laundering suspected. Maybe worse… Read on.
“I just forgot to put it back,” Zhen is reported to say. Investigators are searching his Russian origins to see if they can find any unspent funds in the Arctic deep sea oil exploration pipeline. . The Sierra Club has been alerted. Stay tuned for this fast-breaking story.
By hanging on to his solid gold Rolex watches strapped to his wrists, MPNforum reporters were able to stop Zhen before he slipped away in his black 2012 Maserati GranTurismo on the way to his private Learjet…
MPNforum: Zhen, how could you? All the donations made to this magazine, all the bequests, the sacks of drug company money poured into your publishing empire, why wasn’t that enough? Why did you have to extort the subjects of your articles for more money, Why?
Zhen: My unemployment ran out..
MPNforum: Why not call your bankers?
Zhen: I forgot it was Labor Day and weekend rates applied..
MPNforum (turning to the camera): This case broke wide open when Zhen made a run for one of his country mansions sited by a private railroad spur to escape the hordes of reporters, SEC investigators, Tea Party representatives and political fund-raisers on his tail. Bob Swanson, formerly an ace airline pilot, decided to surveille the..
Zhen: Surveille? That’s not a word.
MPNforum: Yes it is.
Zhen: Not
MPNforum: It comes from surveillance.
Zhen: That’s a noun. You’re trying to use it as a verb.
MPNforum: See, That’s why nobody likes you and accuses you of stealing.
Zhen: I didn’t know that.
(The scene fades as Zhen leaves determined to forget grammar, fair play, and reason itself in order better to get along with the MPN mainstream. Can he do it? Stay tuned.)
The story started long before the American Society of Clinical Oncologists gathered in Chicago.
The beginning
It started four years earlier inTexas and Arizona and 153 different locations where patients, always sick, sometimes dying would swallow a single small pill every day. They were regularly driven from their homes to their local medical center to get pricked and poked, examined and sent back home to hope for the best.
In the whole history of myelofibrosis hope was in very short supply.
And then word leaked out. At first there was only a rumor of success and then the appearance of scientific abstracts, recruitment announcements for new clinical trials. Finally, last month, the story exploded across the Internet .
There is a treatment for myelofibrosis.
Where once there was nothing, now there will be something.
Myelofibrosis
At the acute, devastating end of the myeloproliferative spectrum, MF usually means shortened life expectancy with some intense suffering along the way. As the marrow becomes fibrous and shuts down, blood production moves to new areas. A bloated spleen, thick with new and stored blood, restricts patient movement and appetite, a flood of poorly understood proteins often causes intense itching, bone pain, anemia, night sweats and mind-numbing fatigue.
At advanced stages, those suffering from myelofibrosis begin the process of cachexis, a wasting away syndrome of lost weight, lost muscle mass, and apathy. Eventually, some patients progress to acute myeloid leukemia but the usual cause of death is the crushing effect of myelofibrosis itself.
There is no approved therapy and only limited symptomatic relief.
The only cure for MF is a risky stem cell transplant and that option is only open to the relatively young and healthy.
The rise of hope
There were some signs that hope was on the way. In 2010, the prestigious New England Journal of Medicine published a report on those 153 patients. They had been taking a drug called INCB018424. The study was supported by Incyte Corporation and managed jointly by M.D. Anderson’s Srdan Verstovsek, the report’s lead author and Mayo Clinic’s Ruben Mesa. It was a dose escalation study of yet another JAK inhibitor.
But this time the results of the 14 month study were extraordinary – reduction of spleen volume by an average of over one-third and a 50% overall improvement of myelofibrosis symptom scores.
An open study like this may be promising but it doesn’t prove much to the United States F ood and Drug Administration that approves new drugs based on hard data derived from rigidly controlled clinical trial. The stage was set.
COMFORT
Incyte made the mega-million dollar decision to support two large scale Phase III clinical trials, one in theUnited States, one in Europe. These were the COMFORT (Controlled MyeloFibrosis study with Oral JAK inhibitor Treatment) trials. COMFORT I, the American trial, ended up accruing 309 patients. COMFORT II, inEurope, 219 patients.
Two basic questions would now be answered with scientific clarity. How effective is the drug – now called Ruxolitinib 424 — when matched against a placebo in a blind study? ( In a blind study patients are divided into two groups, each receiving identical looking pills, neither group knowing whether its pill contains the medication or not.) The other question: How effective is the drug compared to the Best Available Therapies, the so-called BAT drugs.
Some quantitative criteria were set up. How much would the spleen shrink, how well would the drug group compare with the placebo or BAT group in reduction of symptoms according to the Myelofibrosis Symptom Assessment Scale. With that, the trial, lasting a little under a year, began.
Back in Chicago
The results formally announced in Chicago at the ASCO conference the first week of June, 2011, were unequivocal. Ruxolitinib was able to stall the rampaging JAK clones, shrink the spleen, and dramatically improve symptoms of myelofibrosis. Incyte filed a New Drug Application with the FDA and asked for fast track approval. It is possible Ruxolitinib will be available for Christmas. But Christmas came early for most patients in COMFORT I and II, many of whom started their trial near death and completed it with a new lease on life..
The Official Results
Both COMFORT trials enrolled high risk MF patients (309 in theUS, 219 inEurope) divided into two arms. In theUS, one arm received Ruxo, 15mg or 20mg depending on platelet levels, the other was essentially untreated, receiving only a placebo.
In Europe, a BAT (Best Available Therapy) drug was given to one arm, Ruxolitinib to the other. The mix of drugs in the BAT arm, including several considered toxic in theUS, was weighted toward commonly used hydroxyurea (47%). Only 4% of the patients received interferons. No Pegasys was included
Despite the design differences, results were generally similar.
Virtually all patients in the COMFORT I Ruxolitinib arm showed some degree of spleen size reduction with 41.9% of patients achieving the targeted end point, a minimal 35% reduction in spleen volume. And nearly half of all patients on Ruxo reported a 50% improvement in symptom burden and quality of life
The results were similar although not so overwhelming in the European version of the trial, reported by Dr. Alessandro Vannucchi of theUniversityofFlorence. While none on the BAT arm of the trial experienced reduction of spleen volume, 28% of patients receiving Ruxo did reach the 35% target reduction. Reduction of severe symptoms and improvement of quality of life was reported by 31.9% of Ruxo participants and none of those on the BAT arm of the trial.
In both COMFORT I and COMFORT II, results were achieved regardless of JAK2 mutation status.
As promising as these results are, the sobering truth is this is the beginning of the battle to eliminate MF, not the end
Robert Rosen, founder of the MPN Research Foundation, considers Ruxolitinib “a huge step forward. It’s no small thing to be the first effective drug for myelofibrosis.” For Rosen, whose MPD Research Association acted as both investor and incubator for scientists working to convert the newly discovered JAK2 mutation into effective drugs for MPN patient, the entry of Ruxolitinib into the FDA approval process is a vital first step. .”We still have a long way to go,” says Rosen,” but the intense level of activity in new drug development, the investigation of new mechanisms of action, and multiple compounds in various stages of the drug development pipeline suggest an unforeseen level of progress.”
` As we go more deeply into this Special Report — and provide supporting data, links and charts to clip and share with our hematologists – the dimensions of this achievement become clearer. Along with celebration, however, there are sobering elements to this astounding success. There are those who didn’t survive, there are failures along the way, side effects to consider and a long road ahead before myelofibrosis can be said to be under control.
What does it mean?
Ruxolitinib can reduce spleen volumes. Everyone on Ruxo got some reduction and some saw complete recovery of normal spleen volumes. Four out of 10 MF patients who took it in the US saw their spleen reduce by more than a third in volume. In Europe, a little better than one out of four patients got those results..
Splenomegaly is not only one result of marrow failure, it is itself responsible for many life-altering symptoms: inability to eat or breathe normally, exercise, sleep or fulfil other normal daily functions.
With Ruxo, nearly half of all patients reported a 50% improvement in symptoms and improvement of quality of life, Then there are those on the placebo or BAT arms taking alternative drugs or none at all. They showed no reduction in spleen size and worsened overall condition. That’s us, MF patients in the pre-Ruxo world.
No free ride
. Generally, JAK2 inhibition is no longer seen as a potential cure for MF but rather one of several approaches that might be taken to attack what is a complex blood cancer. Ruxolitinib, however, did not set out to inhibit the mutant clone but impacted a much broader swath of territory.
If a drug can help you, it can hurt you. Ruxo can help and it carries negative impacts as well. It attacks the JAK2 mutant clone not with a laser guided missile but a shock and awe carpet bombing of the JAK 1 and 2 kinases and the JAK-STAT pathway. Impacting this cellular signaling link – see the sidebar on the JAK STAT pathway – suppresses the marrow, worsens anemia, lowers platelet counts and may well have other adverse effects. For those with MF already suffering from compromised marrow, anemia and thrombocytopenia, this is bad news. The study did show blood counts rebounding and hemoglobin rising to former levels after a few months on the trial. Lowering of platelets continues to be a problem since those with MF and very low platelet counts are not candidates for Ruxo. Verstovsek is confident many response issues can be safely treated at a clinical level. “We can manage these issues and balance toxicity with efficacy,” he told MPNforum, “by calibrating dosage.”
Why invest big bucks in MF anyhow?
In the carefully calibrated dance between Business and Science, patients with myeloproliferative neoplasms stand as poor relations, spectators at a festival honoring major diseases and blockbuster drugs. And among the MPNs, those who are last in line, least numerous and most in need, are those with high risk advanced myelofibrosis.
Clinical trials are expensive. We were told the numbers aren’t made public – “We haven’t given this sort of guidance in the past…” Drug companies are not compelled to tell us how they arrived at the enormous sums claimed necessary to bring a new drug to market.
An Incyte spokesperson did quote a report that might be illuminating: “Finding new cures is an extremely expensive and risky proposition…Estimates about the costs of developing a new drug vary widely from about $800 million to nearly $2 billion per drug. …Recently Pfizer announced that it is investing $800 million just for a set of Phase III trials for a single drug.”
Seriously, who is going to spend $800 million to serve a patient population of a few thousand in the US when insurance might not cover the prescription anyhow?
As MF patients, hat in hand, we can be grateful for any product promising symptomatic relief. But, considering our small numbers and the huge required investment, it is reasonable to wonder at the corporate strategy that would put so much capital in play when there are competing products in the pipeline, and several promising genetic therapies being explored.
Paul Friedman, president and CEO of Incyte, is up front about it. “There was a list and MF was on the list. It seemed the fastest road to market since there was no available therapy for a serious disease. ” Another disease on that list has much greater market potential. It turns out that the JAK STAT pathway is significant to treatment of rheumatoid arthritis, one of the major diseases afflicting ever aging populations.(And that same pathway is involved in gout and psoriasis, as well. where an offshoot of INCB18424 is being marketed as a cream “with spectacular results.”)
While there might be 18,000 MF patients in the United States– and only a subset of those would be advanced enough to qualify for Ruxo therapy — there are over 1.5 million people with rheumatoid arthritis and another 5 million with such related rheumatoid diseases as fibromyalgia and gout in the States. The worldwide market is orders of magnitude larger.
So it’s not about us. Corporate strategists might be sympathetic to the plight of victims of advanced MF but they’re also after much bigger fish and we’re just swimming in the same pond. In a very strange way, we just lucked out.
To have a shot at the RA market, Incyte needed capital, partners, product development, and recognition. In the course of proving its bio-engineering and drug marketing capabilities, Ruxolitinib helped bring all that about.
For some, it is all about us.
For front line hematologists, scientists in clinical practice who specialize in the MPNs, and those who further devote their lives to research and the care of myelofibrosis patients, we are the bottom line.
And they are both relieved and excited about Ruxolitinib.
“For the first time we have a treatment (for MF),” said trial investigator Dr. Claire Harrison of Guy’s and St. Thomas, London “that meaningfully reduces spleen size and addresses the burden of disabling symptoms.”
“It’s an extraordinarily successful study, “said Srdan Verstovsek, “in terms of reducing symptoms…shrinking the spleen. We have things to work on, combination studies to block the pathway, combine maybe with Pegasys, thalidomide or lenalidomide. We’re working on quite a few. And we have to do a study on patients with low platelets, find a way to get them this therapy. I think we have to accept the drug is eliminating symptoms not curing MF. But given such a degree of suffering and debility, the drug is valuable.”
Verstovsek also sees Ruxo as useful in preparing MF patients for bone marrow transplant. “Often when patients arrive for BMT they are in such terrible condition that the odds are against them. We can improve that, improve their nutrition and help them get more fit before starting that process.”
Will Ruxo succeed as a frontline therapy for MF and other MPNs?
Clinical trial results and efficacy in the field are necessary but not sufficient to assure Ruxolitinib of success. The jury will remain out on that one beyond the anticipated December FDA approval date. There are unknown marketing and scientific pitfalls ahead, long-term studies of survival and durability of response that will building on on-going data from the trials. And then there’s the issue of acceptance of the drug in clinical practice and insurance reimbursements. Finally, although Ruxo has a good headstart, there’s real competition just over the horizon.
A final note
As MPN/MF patients we don’t have many options. We can only wait to see how this part of the amazing Ruxolitinib story plays out. The men and women who worked on the development and testing of this drug already have an achievement beyond the balance sheet. The history of myeloproliferative disease will credit them with creating not an oral JAK inhibitor drug but the first effective therapy for advanced myelofibrosis.
With any luck at all, we too will be part of that history.
It is that most wonderful of times, Early Autumn, the heat reluctantly releasing its grip on our days, the nights cool and fresh carrying just a tinge of the coming winter.. The maple leaves have already begun to turn in the mountains and the trees are starting to close up shop and pull down the shutters. Apples are suddenly available everywhere and the last of fresh vine-ripened tomatoes are gone until next year.. September song. The days grow short when your reach November. For many of us these are precious days and our time is short, too short to be spent in petty argument. This September issue of the Forum looks briefly at events in our MPN world, looks back at our earliest history of on-line patient support, and looks ahead to a brighter season coming.
It seems nearly impossible to present information of genuine interest to our MPN community without running into the buzzsaw of objection, controversy, and contention. Other health communities manage to organize support groups without all this rancor. Could it be something in our disorderly blood? Or maybe it’s just in our collective DNA.
A brief disputatious history: Shortly after the Internet permitted MPN patients to get together easily, argument erupted and participants split off to go their separate and discordant ways. Over the next 17 years or so, from those early e-mail groups to the latest splinter list a kind of armed camp mentality developed. Among the lists — MPD Support, MPN-NET and MPDchat –sympathy and support for members is abundant but conditional. Despite willingness of list managers to put in long, selfless hours in the work of supporting their own members, cooperation among the separate lists is virtually unknown. .
However, there is reason to be hopeful. The lock on crucial information once held by a handful has been effectively broken by the advent of faster, better search engines, informed patients and mobile computing. Simultaneously, Facebook and other social media offer a new easy openness for crucial support networks. An era is passing. A new era is already upon us.
The dawning of real MPN patient support was created out of the compassion, compulsion and selflessness of a single woman physician. Someone virtually unknown to us today just a few years after her death. In tribute, this first part of our series on on-line MPN support asks Who is Harriet?in hope the answer might recall us to our better, less confrontational selves as we move toward a more open, less combative world of on-line support.
One of our own here at MPNforum was present when the troubles first surfaced, or at least close enough. And here, in a coda to our tribute to Dr. Harriet Gilbert, Jeremy remembers those first meetings of a patient support group that formed under her guidance, a group that included the founding leaders of today’s two largest MPN groups — Robert Tollen and the late Joyce Niblack.
Sadly, we even manage to do battle with each other over simple research initiatives. The 23andMe offer to build an MPN DNA/phenotyped database in order to facilitate basic research has been met with hoots and catcalls as well as warm acceptance. We published a comprehensive report right here and were accused by a dissenting manager of MPN-NET of being paid off by 23andMe.
On-line e-mail based support groups, populated by MPN patients and caregivers, find their common interest in drug discovery and treatment options ends at the borders of their separate lists.
Censorship is widespread. For example, only MPD Support now publishes notice of MPNforum’s publication. MPDchat never did. MPN-NET stopped publishing our announcements. These attempts to stop the free flow of information by administrators are directly contrary to the interests of MPN patients and caregivers who come together for information and support. Dissent is an essential part of the learning process.
Within our own private Facebook page and here, in the magazine itself, we have had civilized disagreement. For example, Arch has a different opinionabout participation in the DNA project and he expresses it in this issue… Mike has been vocal in his dissent in detailed comments right here… So when the first MPN23andMe DNA report was completed we thought it was time to find out what this is all about and clear the air. You can look at Zhen’s report, Bare, Naked DNA, right here and make up your own mind based on the real thing.
Ploidy anyone? Not every research project engenders this kind of heat within our community. In part it’s a question of vocabulary. The dense scientific jargon in which findings are couched prevent easy access by those who most need to know. That was the case when we ran across a study on reversing fibrosis. In this issue, we present it to you along with a translation of a word you likely never heard before.
Finally, a note of congratulations to our own MPN Research Foundation, responsible for discovering and funding so much significant basic research into the causes of myeloproliferative disease since its inception. This week they launch their new website as a community tool with improved access to information and resources www.mpnresearchfoundation.org
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>>In this issue>> Who is Harriet?…Jeremy remembers the beginning of MPN on-line patient support..Zhen strips down to bare, naked DNA…Reversing Fibrosis, results from a Boston lab… Columns by Patricia, Jeremy, Arch, and Mike
To access an article or column, click on the hyperlinks, above. You can return to this contents page by clicking the Take me back link at the end of each story.
[Dr. Harriet Gilbert’s photo provided byThe Mount Sinai Archives.]
back to school 