I was diagnosed with ET last year after confirming that I have the CALR mutation. I ignored the symptoms a few years ago but thanks to my company mandating annual physicals my primary care physician noticed the platelets increasing. Over the last 2 years I’ve gone from around 500,000 to 880,000. During that time I have worked hard to get in great shape. I know it doesn’t impact the disease progression but I had to do something to help myself I guess.
Yesterday during my check up my blood pressure was 117/70 and resting heart rate was 62. I have never had any issues with clots. Then the bad news, at 41 years old I’m at 880,000 and the discussion about starting Hydrea began.
So here’s my question. Are there exercise routines or sports that I’ll have to stop soon? I do Brazilian Jiu Jitsu (a form of grappling, like wrestling but slower paced). It is great for health and stress. Most importantly it is an activity I share with my 9 year old daughter.
I can’t seem to find any good information about sports and ET or Hydrea. Thanks for any help as I try to figure out what’s next.
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MJL1977
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Hi there - I have ET and take hydroxy (since mid 2018). I’m very active - racquet sports, hiking, running, gym, etc. I’ve never been told that I shouldn’t do any activity and in fact I think that the more active we stay, the better it is not only for our bodies but also for our minds, emotional well-being etc. So, I’d say, keep on keeping on. You could always ask your doc but I haven’t heard or been told that any physical activity is out because of the meds.
Hi. I think you should ask your MPN specialist. I was told to avoid anything that could impact my body more than gently because I have a history of blood clots. My doctor doesn’t even want me to get a massage with much pressure. I hope if your doctor says you shouldn’t continue that you and your daughter can find another activity that brings you pleasure. Best of luck! Katie
Thanks. It’s funny how having a disease is what gets me to treat my body better. My energy has improved drastically but lately I’ve noticed that I need a nap afterwards.
You are very young to start Hydrox, 60years in UK to be considered for this drug. I am 67 and are only on aspirin, NZ have different guidelines. My platelets are 701. have been up to 980 but when I got rid of some stressful events in my life they came down to 601.
My Dr was thinking of starting me on Pegasy but after discussing various issue we decided on Hydroxy as its side effects are milder. And some people never exerience any.
As far as I’m aware being CalR positive in ET does not hold the same thrombotic risk as being Jak2+. Additionally, you are also very young at 41, and in great shape too. Yes, your platelets are raised but 1500 is generally the number that would suggest treatment unless you’re symptomatic. Presumably, you’re taking baby aspirin?
Is it your a Primary Care Physcian that is recommending that you start treatment? If so, I would ask for a second opinion. Because you are so young, it would be ideal if you could see an MPN Specialist. If it is then considered necessary to commence treatment (and it may not be) as someone has already mentioned, ask about Pegasys
I have been seeing a hematologists for the last 18 months. He recommended considering the medication but he also wants me to go to Dana Farber in Boston for a second opinion with a specialist. He wants me to get in ASAP. His sudden sense of urgency surprised me and made me nervous. Up until now he was very calm during every check up and insisted that I will be fine just taking the baby aspirin. Thank you for responding.
Hi, I've been on Hydrea for ET CalR + for nearly 15 years. I go to the gym 3 times/week also swimming, cycling & now Pilates classes. I'm approaching 70 this year and feel very fit. My consultants believe keeping fit is really important for wellbeing as the condition (& meds) are thought bring on fatigue. So exercising will certainly help overcome lack of energy.
Thank you. Knowing that you’ve had success staying fit for so many years is encouraging. At this point I don’t care about physical appearance, I am a very active person. I hate the idea of having no energy. The internet is full of horror stories. Did your team ever mention any risks associated with contact high intensity workouts?
My consultants have never questioned my exercise regime. They’re usually quite impressed! their attitude is “go for it” even if there are risks in, for example, falling from my road bike. I refuse to let ET control my life or lifestyle. Good luck!
I have CALR ET and I'm 41 and my hematologist said no hydroxyurea until platelets are over 1 million and maybe even wait until 1.5 million. Mary is right. CALR ET does not carry the same clot risk as jak ET.
Thank you. This is the first time I’ve heard there is a difference. The idea of a clot had me sleepless last night. The treatment conversation took me by surprise so I wasn’t able to ask questions about what to expect next.
One thing you may want to ask about is acquired von Willebrand disease. Sometimes when a persons platelets go over a million they get acquired von Willebrand disease which actually makes you more susceptible to bleeding versus clots. I actually saw this first hand when I was a veterinary technician. A dog came in with a platelet count over a million and he started getting nosebleeds. I'm not saying that to scare you but it may be more of a concern for you since you like contact sports.
Hi MJL1977,sounds to me like you have a good doctor who as your best interests at heart. He/She, probably want you to see a specialist because he could see you were reluctant to take medication and he would prefer you had a second opinion? On what i've read and understand having the jak2 gene is the higher clot risk but i would certainly talk with your haemo about this. Atb, tina.🤗
Continue do what you do end forget about hydrea! I've been diagnosed at age 40 ET calr positive. At the time of diagnosis platelets was 860. Last 10 years around 1100-1400 up and down up and down. Been seeing several hematologists and came to understanding they know nothing! I would recommend you to check clotting time. Depends on number decide take aspirin or not. And continue live how you did before! Good luck.
I didn’t realize that the platelet count can stabilize or fluctuate. I just assume it always rises. That gives me some hope that I can avoid meds for a while. Thanks!
Couple more tips. It doesn't matter how many platelets you got as soon as you have no inflammation in your body and your arteries! Follow low carb diet. You can practice fastings. It's real good for overall health. And of course continue exercise!
strokes,heart attacks and others vascular conditions has nothing to do to platelets count! Don't even think about hydrea. Of course if you don't want a poison your body.... Take care....
THIS REPLY HAS BEEN EDITED AS THE INFORMATION REGARDING STROKES, HEART ATTACKS AND OTHER VASCULAR CONDITIONS IS INCORRECT this is the correct information: in someone with ET the bone marrow makes more platelets than the body needs, platelets are needed to help blood clot, but in people with ET, overproduction means they don't work properly, although it is mainly platelets that are affected, white blood cells may also be elevated. The excess of platelets and white blood cells may cause blood clots (thrombosis) which block a vein or an artery and stop blood flowing, or it may cause excess bleeding. The most common complications are blood clots in the: arteries (arterial thrombosis) which may lead to heart attacks, strokes or damage of intestinal tissues, such as gangerine; Veins (venous thrombosis); Lung (plumonary embolism) a blood clot with travels through the bloodstream and causes a blockage in one of the arteries of the lungs.
Where did you get this idea in your head that you can't do sport with ET and HU? After my diagnosis in 2016 with ETJAK2+ I started exercise, I walk everyday, do yoga and I recently bought myself 3kg dumbels and 2kg ankle weights and I exercise with those a couple of times a week. I am seen at Guy's and the Physio Department is very keen for me to go to the gym!!
I have always understood from this site and advice from others that as long as you can stay physical you should. If you feel like not being physical due to fatigue and other related symptoms of the condition, you should work towards getting back your physical exercise routine. Cycling is recommended and of course, the best ever for this is yoga. ATB
I was 33 when diagnosed with ET CaLR positive my platlets where 1.2 million and I started on interferon for many years and the side effects where manageable however as I got older I needed a bigger dose of interferon and the side effects were getting a bit much so I was switched to Hydrea no side effects at all (I think I was about 42) I was on it until last year when pegelated interferon became available on our PBS system here in Oz and I switched to it in July just after my 49th birthday. It has had the best effect on my platelet count (my average is about 450,000) no noticeable side effects. I am very active and a very positive person and have not let ET change my life it’s just become a part of it, most of the time I forget I have it 😁.
You are doing the right thing, stay active enjoy life, you will have a long and happy one. Definitely ask your Specialist about pegalated interferon.
Your BP and HR are fantastic! Im envious. I doubt you will need to stop. I just started Hydroxy and i probably feel better. My Plts ave 1200-1300 and only had Aspirin for 10 year. Im 44 now.
I got tired, exhausted and stopped my fitness routine and now have to go on Hydroxy. Worst case you may need to reduce but not stop. But i doubt it. Just by your BP, HR, Age and Plt count, i would say you will have no problems. (Thats just my opinion, of course). A strong body can tolerate treatment better.
As i said, i only just started Hydroxy but i also need to start exercising again. For me its probably going to be easier now. I think my ET was slowing me down. Feeling exhausted all the time.
As a side note, i know a guy on Instagram that is about 65 yo with cancer and hasnt stopped exercising even while getting infused with chemo. He literally is doing push ups while the stuff is going into his arm. He was exercising before he got cancer and continued. He's very inspirational.
Hi MLJ1977, I’m in Austria. 53. CALR also. Was also told HU after at least 60. 900,000-1mill without meds. I’m on Anagrelid. Was on 6 capsules daily, which gave me heart pounding. Due to thevautoimmune Paleo diet and detox and exercise was down to 3, without problems, plenty of energy. Now I’m on 4, since I was sick with parasites. Threw my whole system off. 4 causes stronger heart beating. I don’t like that. It makes me weaker and I need more breath. Exercise is fantastic for us, as long as we don’t do too much. That actually raises thrombocytes. It’s good to take short rest during the day. Lie down and put you feet up for 10-15” before you get tired. Helps me a lot. You have to find your own rhythm. All the best!
Hi MJL. My 33 yr old daughter has also being diagnosed with ET and the CALR mutation. Her levels are currently around 1300. The haematologist was beginning to talk about hydroxy. Did a heap of research and came across these two very interesting papers
They are pretty academic and it takes a bit of concentrating when you read the paper.
I made this summary for my daughter:
The treatment regime for JAK2 and CALR mutation needs to be different. (It seems some 'experts' treat both mutations in the same way).
The incidence of either venous or arterial thrombosis in CALR patients is not reduced by aspirin. In fact, in the case of venous thrombosis the incidence is higher with aspirin (This is the opposite of JAK2).
The incidence of major bleeding is significantly higher in patients who took aspirin.
The more recent paper (2018) says regardless of how high platelet levels go, an asymptomatic patient should be only under observation.
The upshot of all this is that my daughter is under observation with a low dose aspirin twice a week. The haematologist has a lot of respect for the researchers at Mayo Clinic.
Funnily enough she also does Brazilian Jiu Jitsu, climbing, running, cycling, swimming and walking.
Thank you for the great information!! Your note and this group has helped put my mind at ease. I have plenty of solid questions for my appointment with a specialist.
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