Connect
Essential Thrombocythemia: Looking for information and support
I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
I saw my hematologist this week. One thing that surprised me - when taking HU, one can be very susceptible to sunburn. Anyone experiencing this?
He has me continuing daily baby aspirin, and waiting 3 months this time to see if platelets hold in the 500's. My PCP will draw blood again next month and coordinate care.
Diagnosed with ET, My age is 62 and in good health except platelets are 570 and taking Hydroxyurea 500 mg 1/1/2 and ecosprin 75 mg daily . Want to know can Hydroxyurea stop any day or life long we need to take . If some people going through similar issues, please reply . And how long one can take these medicines
Jack…that is great news.
After selling our condo we came drove back from Florida on March 17. It was a very stressful time. I saw my hematologist ten days later. My platelets were 581, headaches much less. She decided to let me have a longer break from HU until I see her again in a month….I am on Eliquis so less worry about clots.
Best wishes, Eileen
-
Like -
Helpful -
Hug
1 ReactionHello Eileen. Thanks for checking up on me. I actually had an appointment with my hematologist on April 10 at that time. My platelets came down from 610 to 534 which was good as I was only on HU for two weeks. I had a great conversation with my hematologist and he also set up a meeting with the hospital pharmacist. We are having a conversation over the phone on April 17. So far, I haven’t experienced any side effects except for that first day of use and I am very thankful for that!
Me diagnosticaron Trombocitemia esencial. Tengo protesis mamarias hace 20 años. Queria saber si alguien ha investigado sobre el sindrome de Asia. quizas pueda estar provocando alteraciones en la medula.
View Translation
Hi jackt00,
How was your visit with the hematologist? I hope you are adjusting to HU. Any headaches or dizziness?
Eileen
-
Like -
Helpful -
Hug
1 ReactionI am having problem with statins. Upset stomach and leg pains
That is good to know. Thank you. I haven't had a stroke or heart attack but did have double vision, vertigo and headaches before being diagnosed with ET.
-
Like -
Helpful -
Hug
1 ReactionI take a baby aspirin, but I have heard from others that they take one regular strength aspirin.
There are alternatives if you are worried about aspirin side effects. If it bothers your stomach, ask if you can lower the dose and take enteric-coated?
I have been on full dose aspirin due to a stroke in 2018! Elevated platelets in 900’s now. I started close to month ago on hydroxurea 1000 mg. I have been fine on aspirin
-
Like -
Helpful -
Hug
1 Reaction