I’ve been wondering if there are any stats on people who have lived the longest with ET and taking Hydrea? As I hit the 30-year mark soon, I’d like to know about long-term survivors! 🙂 Guess I’m looking for some encouragement–haha!
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@lefsequeen, I read in another thread that you've been living with Essential Thrombocytosis (ET) and managing well with Hydrea (hydroxyurea) for 30 years now. You may be the record-setter among our group here. @misty45 @carlavan @esperanzam @susanellis @stevehurlburt @huronshores @tresman10 @cblowers1 and others will likely have much to learn from you.
What tips might you have to share about long time management of ET and living life?
I am new to Connect . Ive registered but never commented before…
I was diagnosed with Essential Thrombocytosis (ET) in 2013. My platelets are stable on 500 mg Hydroxy along with 81mg aspirin per day. I am 75 yrs old and want to stay active and upbeat for many years ahead. Over the past year I have noticed an increase in many other symptoms that doctors don't seem to relate to ET. I live in Alaska and ET seems to be a mystery disease.I have never met anyone up here who struggles with it. I have tried connecting with the MNP foundation but was told you can't discuss symptoms there.
My Oncologist/Hematologist is a really nice person but only seems interested in the blood work giving no attention to my physical complaints. Some of it has been downright frightening lately. Last August I was sent to the ER by my primary care doctor because of high blood CRP levels following a horrible HA with vomiting and neck pain so severe I couldn't move my head for several days. The ER did an MRI of my cervical spine and brain and told me to see a neurologist. When I finally got an appointment with the neurologist, after several months, the neurologist did an EMG and reported that to her surprise I have neuropathy. She also did a mini mental test and told me to return for follow up in 3 months and that the mental check showed signs of mild mental decline. I do have trouble remembering names and easily feeling stressed out when under pressure. I also have Raynaud's syndrome, a lot of bruising and discoloration as well as tingling and pressure in my feet, legs, arms and face . I see a physical therapist when struggling with spinal stenosis and cervical pain . All of this, on top of the shut downs from COVID has changed my life immensely over the past year . A year ago my husband and I were doing Crossfit twice a week. 😊 I don't want to be a complainer. I do want to be well educated and am really hoping to make connection with others with ET and learn more about the disease and hopefully help others. Thank you.
Hello capacity…….I have had ET and myloproliferative neoplasm for almost three years now. The 500mgs of Hydrea seem to work okay for me. I take one every day. I understand what you mean about the blood Doctor being evasive about the disease and the treatment. When I ask questions he tells me to let him do the worrying and that he will take good care of me. That is why I joined the Mayo Clinic forum, to get answers and feedback from others with the same problems. For the most part I think I am doing well but I still have fatigue and a bit of itchiness, my face is always red with pinpoint marks and I have tried every cream available and nothing works. Do you have any symptons such as mine. I have heard from others that the doctors do not like to discuss details they are just interested in the blood work. If you have any questions that I might be able to answer please contact me…….Claire39
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Honestly, I don't know if I have any tips! It was a really rare condition back when I was dx by bone marrow biopsy in the early 90s, and there really weren't very many support groups on-line from which to gather information. I was initially very concerned. At that time, anagrelide was new, and the concerns about long-term usage of hydroxyurea were very high. I used HU for awhile, then tried AG, but had terrible side effects from AG, so went back on HU. I was being treated by a hematologist in Ft. Wayne, IN but decided to travel to Rochester Mayo to see an ET specialist there. He felt that being as young as I was (early 40s by that time) I could manage with only daily 81 mg aspirin. So, I went off HU but soon after had some frightening TIAs. That helped me decide HU would be the best option for me. A decade or so ago I made an appointment with Dr. Tefferi at Mayo Rochester to see if my current treatment protocol was best for me and to learn if I had the JAK2 mutation (which I do). He said I'd likely die of something else before I'd die of ET, so stop worrying! 🙂 Therefore, since that time, I've basically taken my 500 mg HU and 81 mg aspirin daily, gone for quarterly CBCs and regular checkups with my regular hematologist and lived normally. I doubt that anyone much knows I have this blood condition. My advice? Stay active and live happily. If you begin to have an issues, your body will tell you. Otherwise, there are much more serious things in my life to worry about! 🙂 I'm happy to field questions, tho, as it has been a journey with definite ups and downs. It's most frightening when one doesn't have information, I firmly believe!
Hi lefsequeen, I am new to this group also. Hope I'm doing this correctly…..
I was very encouraged to read your post as I also have ET and have searched for others to connect with.
I sent a lengthy message yesterday explaining my situation but haven't seen it on the board yet.
I was diagnosed in 2013 at age 68 and had a bone marrow biopsy in 2017. The bone marrow biopsy confirmed a JAK2 V617F gene mutation with easy bruising . I take 500mg HU along with 81mg asprin daily. This keeps my platelet count in check. Over the past year I have struggled with many increased physical symptoms which have slowed me down considerably and I am searching for answers as to the correlation of symptoms to the ET and the HU.
I do all I can to eat well , take my vitamins and live a natural healthy life style . My symptoms include worsening neuropathy with varying levels of tingling, tightening, and numbness in my feet, legs, hands , face and head. These come and go… I bruise easily and have Raynaud's syndrome with intolerance to cold in my hands. I also have spinal stenosis in my lumbar and cervical spine , In August of last year I had three horrific headaches during a two week period, with neck pain so severe I could not more my head . The MRI of my brain showed evidence of blood from a previous possible thrombosis . I saw a neurologist along with my oncologist and neither seemed concerned about the findings. What caused the headaches and neck pain is a mystery and I haven't had them since, although I do experience periodic pressure in my head and eyes. Most people would not know I struggle with any of these issues and I stay as active and upbeat as possible. In general life is very good and I am thankful and blessed. My primary care physician tells my husband and me that of all of his patients my husband and I are two of the healthiest! We are 82 and 75 respectively….haha.
It is also wonderful to hear from you! I have begun to wonder what life will be like for me in the next decade, thus I decided to ask people on this site what experiences they've had. Because I was diagnosed in my late 30s, I now think about the possibility of increasing symptoms from the disease. I have been very blessed to not have significant issues with the disease or HU thus far. But I have had severe migraines since I was in my 20s. And just after I turned 54, I suffered a nearly fatal, sudden brain aneurysm hemorrhage and subsequent stroke. I have asked physicians since that time if it was related to ET, but they claim not. So, most of my ongoing issues are actually from the aneurysm/stroke and not from ET or HU (at least I don't think so!) I am encouraged that you are 75 and doing so well, despite your other issues. Carry on! Life is a gift not to be taken for granted, as we daily learn!
I found MPN Voice on healthunlocked.com. I was diagnosed with ET JAK2 in June 2022 so I am just starting the journey,
Eileen G. In Pennslyvania
Though I was diagnosed with ET, and JAK2 this summer, I still hesitate to take Hydrea because of my age (nearly 81) and CBC numbers are still in 600s. Does anyone know what statistics are of life expectancy of those who do not take a chemo drug? Have any studies been done re. this? What exactly is low risk and high risk? Any input you have will be appreciated.
Hello pumpkin -I’m also 81 and have been on Hydrae for two years. It took a few months to get the correct dosage, 1 x 500mg too little but 2 x 500mg just too much. I’m now on 2,2,1, regime.
My skin became very dry, red and blotchy plus after a year I started to lose my hair. My haematologist is adamant if I don’t take preventive medication I will suffer either a stroke or heart attack sooner than later.
My hair loss seems to have stabilised, so am reluctant to start an alternative medication. I am not prepared to take the idk, especially an immobilising stroke. AnnO from Australia.
I have been taking HU since about 2012. 500mg per day and a baby asprin with it. I'm now 70 years young, some days…lol I think, from what I have gathered, if you don't take the HU, you open yourself up to the real possibility of strokes. That scares me a lot more than taking the HU! It was only very recently I heard ET described as a rare blood cancer! No doctor ever called it that. I also bruise terribly. All I have to do is scrape against something and I get a huge purple/red bruise! I hate that…it is so ugly. I tried anagrelide at first too but had tremendous headaches with it. They switched me to HU and thankfully I have had no major side effects. My counts are starting to jump higher so now I take an extra HU on Monday and Thursday.
We all just do what we have to and try to be as health as possible. Good luck all…
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