ET, HU and Me
- Barbara Kurtz, RN
In the fall of 1968 I returned to Johns Hopkins Hospital School of Nursing to start my junior year of school.
A couple weeks later I wound up in student health with the measles and a noted platelet count of 782,000. WBC’s and RBC’s were within normal limits. I had follow up for several months and my platelet count pretty much remained the same.
Barbara with her Dad and Mike, an earlier timeI graduated in 1969 and started working at Hopkins. In January of 1977 I was seen at urgent care for a strep throat and noted to have a platelet count of 810,000 and sent to the hematology clinic where I had my first bone marrow biopsy (which was done in my hip and involved a wooden mallet). The biopsy report said, and I quote” showed the marrow was hypercellular with a prominent increase in megakaryocytes compatible with myloproliferative disorder. Philadelphia chromosome was not detected. “ The doctor told me I had ET.
What still stands out in my mind 41 years later is I heard it can convert to leukemia and beware of any one who wants to treat it as the treatment is worse than the disease.
I went on with my life and in 1978 I moved from Baltimore to Southern California. When buying a house I was turned down for mortgage insurance which suddenly caught my attention. Oh dear! They think I might die! The doctor who examined me for the insurance forms was interested in more testing with possible treatment as my platelets by 1980 were about 800,000. I wasn’t interested.
In hind sight beware of treatment was not good advice.
A few years later I had 4 separate episodes of vertigo for which I went to the ER each time. My migraines I’d had since I was 17 increased in frequency with more spectacular auras including blind spots and finger numbness with flashing lights. I started feeling chronically seasick and by 1986 I couldn’t get out of bed without getting dry heaves.
I was seen by a neurologist, an ENT and GI man. After many tests which ruled out meineres, gall bladder and a host of other things the neurologist suggested that perhaps my platelets of 1.3 million were causing thick, sludge like blood to not flow well through the fine arteries of the inner ear and sent me to hematologist where I had my second BMB which was much easier and less painful than the first.
By that time I wanted so bad to feel better and get back to work I was ready for treatment when he suggested I start hydroxyurea (HU). So I did. My first hematologist prescribed it and I don’t remember the dose but I took it long enough for my platelets to come down to about 400,000. It took 6 months but I returned to work. At that point he took me off of the HU and my platelets slowly increase. When I started to get more sea sick again as my platelets climbed, he would but me back on the hydrea. So I see-sawed back and forth for a couple years until I changed hematologists. He suggested I take a more steady dose and keep my platelets at a comfortable level all the time which I have done since 1988 until now, with the same hematologist.
I went off of it for 6 months in late 2006 until early 2007 while I underwent surgery and chemo for breast cancer but my platelets didn’t stay down for long.
I still have some residual damage to my inner ears and aside from some problems with balance after some years found that with a platelet count at the lower range of 350,000-450,000 was where I was most comfortable with minimal problems from seasickness and headaches. I can tell when they rise by an increase in those symptoms so my dose has varied over the years from a low of 500 mgms 3 or 4 days and 1000 mgms the other days a week to 1000mgms 7 days a week with an extra 500mgms a week at times. For the past 5 years my dose has been on the lower side.
HU is not without it’s problems and though everyone is different I suffered from mouth sores and still do at times but if I’m careful about eating citrus including tomatoes I’m less likely to have problems. In the beginning I had sores from one end of my GI tract to the other. There was some nausea which was why I chose to take all my hydrea at night. There is dry skin (and not just from living in a desert climate) and thirst.
After 30+ years of taking hydrea I have developed low thyroid, high cholesterol and high blood pressure as well as acid reflux which people with out an MPN also get mostly as they age.
In my late fifties I developed cataracts in both eyes that required surgery. The eye doctor thought it might have been accelerated by the HU. I didn’t have chemo for breast cancer until after cataracts so I don’t know the answer. In the past 10 years I have developed peripheral neuropathy in both feet tested by a neurologist. It is slow moving and hasn’t gone beyond my feet. It is annoying at times but not painful. It could be from the breast cancer chemo or HU or a combination of both. Or for some other reason.
I worked full time as a nurse and am now retired. I am now 70 so basically have had ET for 50 years, diagnosed when it was still a disorder. MPD. I tested JAK-2 negative when that became popular. And I have taken HU for 30 years.
When the on line support groups started in the late 1990’s I discovered that a lot of the symptoms that doctors said couldn’t be related to my MPN were shared by many of us. And I learned more and more about the research being done. Some seemed exciting with more promise than panned out.
One of the bigger discussions now is about Interferon vs. hydrea. I went to the 2015 ASH conference in San Diego and listened to the discussion and presentations of each and the comparisons, and at that time the final verdict between interferon and hydrea was inconclusive. Zhen did a good article after that conference in the free on line MPN Quarterly Magazine.
The conclusions appeared to be that each works well for some people and not for others. And some folks have problems with one or both. I have stuck with the devil(hydrea) I know and so far have not been inclined to switch to interferon.
So what’s next for me?
ASH Conference 2018
This was my second ASH (American Society of Hematology) Conference. Both I went to were in San Diego which is an exciting city that has an enormous convention center. The 2017 one was in Atlanta and next years is in Orlando. It is called American but there were attendees there from every continent in the world and a lot of different languages spoken.
(picture of program book) The conference is well organized from the shuttle buses that pick up and deliver folks from hotels to the Convention Center and back, 6:30 am to 10:30 pm about every 20 minutes, to the lectures, presentations, poster sessions, and displays by pharmaceutical companies. The program book is thick and covers happenings for all days. There is also a smaller booklet of maps of the conference rooms, display rooms and Starbucks. Starbucks had the longest lines.
Since I went as a member of the press for the MPNforum Magazine I had access to the press room and briefings as well as lunch and continental breakfasts. There was access to WIFI and written information. A daily newspaper was published describing important lectures, research and coming events.
I met with people involved in MPN research, diagnosis and treatments, and fund raising. They are an enthusiastic group of people. I don’t think there will be a headline soon proclaiming a cure for the MPN’s but there is big money for research and promising genetic research.
My biggest thrill was meeting Zhenya Senyak who along with several others started the FB MPNforum as well as the MPNforum on line Magazine. He has most of the well known MPN specialists on speed dial as well as members of organizations like MPN Research Foundation and has accessed and shared a lot of information for those of us with an MPN over the years.
I am hoping that someone or someones on the forum will think about attending next years conference in Orlando. What you mostly need are curiosity and a good pair of walking shoes. And not mind crowds. Also getting a press pass helps which Zhenya helped me with. I have written a few articles for the MPNforum since it began, mostly about my 50 years of ET and 30 years on hydrea as well as being a caregiver for my husband and research Dr. Mesa’s group did on yoga and diet. others on the forum have written articles too. I have no real experience interviewing people for reporting purposes, but as a nurse have experience talking and listening to people.
Think about it.
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