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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!
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I have been on Hydroxyurea since 2018. Although it has many side effects, such as fatigue, itchiness, mouth sores and headaches, it is essential and manageable.
Good luck with your journey……..Claire
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6 ReactionsThank you for the reply!
I’ve taken Anagrelide since 2018. Every morning and evening after taking the pill, I would have palpitations, migraine, diarrhea, stomach pain, and nausea. So many times my heart felt like it was going to jump out of my chest. The symptoms would last for several hours, except for the palpitations. I went to work sick every day.
I told my oncologist my symptoms but he had no advice for me. My numbers were all over the board. After researching, I found out that certain foods increase platelets and guess what, they were my favorites, all dark leafy greens, amongst other things. So I cut all those out. My numbers dropped but I was still getting sick. I figured out that after taking the medication for so many years that my gut biome was depleted. I was right, so I started taking a pre and probiotic with every meal. All my symptoms disappeared within a month. I had forgotten what it felt like to be well.
If you can avoid the anagrelide, certainly do so, it’s more potent than the Hydrea.
Best, Phyllis
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3 ReactionsHi Phyllis,
We live in the suburbs of Philadelphia and do not have a Mayo Clinic in our area. I see a regular hematologist who says my goal is 450 or less. As much as I hate Hydroxyurea I am very hesitant about Anagrelide as I have AFib. It seems some get palpitations taking it.
What was your experience with Anagrelide?
Thank you, Eileen
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1 ReactionI started on 500 mg hydroxyurea back in April, taking one capsule daily. My platelet count was 636. Latest bloodwork showed a platelet count of 418, so my oncologist agreed to see if taking it every other day will keep the count down. I'm hoping that will minimize the side effects of headaches, brain fog, etc.
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2 ReactionsWondering if anyone has experienced a venous stasis ulcer from taking Hydrea?
Phyllis
Eileen,
Is your hematologist from the Mayo Clinic?
I live in a small rural town and work for the local hospital. My oncologist said that the new standard low platelet count for ET is 600k. Anagrelide is a more potent drug than Hydrea. I know because I’ve been on both.
Injoy,
Phyllis
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2 ReactionsI also have headache issues with Hydroxyurea. I am now only taking 500:mg on Mon/Wed/Fri. I still have headaches but usually just mild. My platelets are down to 509 but my hematologist wants to get them lower. Some talk about Anagrelide. My next lab is in six weeks.
Best wishes, Eileen
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3 ReactionsAccording to my Heme doc, not all ETs are cancer. I have Jak2, which is not cancer and unlikely to become so. Best to ask your doc for more insight and perhaps more testing.
Hi @jacqueline, I hope you’re finding out that you’re never alone now that you’re joined our Connect group! We’re like a big ol family sitting around the table drinking coffee, tea…and I’m sure we’re snaking on healthy foods. 😂
I’ve found a couple of conversations in the forum with other members who take hydroxuryea. They are not all ET patients as hydroxy is used across several blood disorders. But some of the members have side effects including headaches.
Here are a few discussions for you to pursue.
How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? With members @dancouclanel4 @koryw208 @gmacookie @lefsequeen and others…
https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
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This discussion with @dale1k @nypara66
@1995victoria robert3861 (who both have ET)
Hydroxyurea side effects lessen over time?
https://connect.mayoclinic.org/discussion/hydroxyurea-side-effects-lessen-over-time/
One thing that has worked for other members is to speak with their doctors about perhaps lowering the dosage. Have you told your doctor about your recurrent headaches?
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3 ReactionsStarted Hydroxy on 22d May. Seems like the more my platelet count comes down, the worse the Hydroxy symptoms get … mainly headaches really …which I already had before treatment but they initially eased on Hydroxy. Brain fog comes and goes.
I appreciate your interest. Easy to feel lonely in this, down under.
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