Essential Thrombocythemia: Looking for information and support

Thank 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

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

I’ve been taking Hydroxyurea for at least 30 years and last year or so was switched to Anagralide with no problems or changes. I also have Afib and take a prescription for it. Don’t remember the name of it. My hematocrit ranges between 27 and 22. When it gets to 22 I get a red blood cell infusion and that’s good for at least a week but usually 2 and so 3. I can do anything I want, just not for very long before I want to sit down.

"I can do anything I want, just not for very long before I want to sit down."

That's familiar territory for me, too! No afib, but a mitral valve they tell me needs repaired. I told them not until they agree to do the transcath procedure instead of cracking my chest open. I think they'll cave in at my October appt.

I am scrubbing tile on the kitchen counters today. It's going about 3 feet at a time. Then a short break to let one section dry before starting the next.

I used to be a super high energy person, and I get disgusted at the pace I have to work now. It's often hard for me to accept limitations.

Hi my name is Sylvia nice to meet you all . I have the same blood cancer . I take 1 baby aspirin 81 mg and hydroxea was taking 2 capsule every other day but it made me so tired so I cut down to 1 capsule daily but on Sunday and Wednesday I take 2 capsules .My platelets were up at 1,202 around April first diagnosed 2021 then October dropped to 636 . I want to say that at first I also was scared and brought a lot of emotions but I come to understand that this is part of my every day life now . around that time i recall as if something was terribly wrong I felt my body full of pain and inflammation . I remember getting bruised easily as well . I cut down on red meats and caffeine for I feel as if it triggers my bc ( blood cancer) now that my numbers have dropped but not as to where my oncologist needs them they are around 484 now . I take walks ride bikes and sometimes I get on my treadmill . I still get tired at work around 3 pm I feel as I want to take a nap the weird thing about that is that on my days off I feel exhausted but was not able to sleep back then .. now my Dr. told me to take my medication at night that has really changed to a positive .. I’m tired but it is manageable during the day and get to sleep at night now … I also have tingling in my hands on my fingers as I’m laying down texting you .. I haven’t told my oncologist as I forget .. Keep us posted stay positive and I know things will look brighter.. big hugs prayers to all of you 🤍🙏🏼

Welcome to Connect @sherna09. Thank you for sharing your experience with ET and how you’ve been able to accept and roll with the changes it brought to your life. It’s frightening getting a diagnosis of a blood cancer but it’s stories like yours that help to encourage others, especially someone new to ET, to stay positive; That the symptoms and condition can be managed and you can have a full, active life.
One little note of interest. You mentioned your fingers tingle when lying down and texting. I had similar and have been seeing a massage therapist who corrected the nerve impingement in my neck/shoulder area. That has all disappeared now…just thought I’d toss that information out here for you. ☺️ Might be worth a try.
How often do you have followup blood work for your ET?

I’m the same I have no energy and get extremely tired went to clear the pond plants today as they had over grown. 10mins was all I managed. I also had to stop my pain meds as Im already on 75mg aspirin and the meds were also aspirin based. I have neuropathic Pain following complicated previous surgeries on my spine. I also have extreme joint pain, so at the moment am in agony. Have been prescribed co-codamol. 3rd week on HU, also take Lyrica, Sertraline. Nothing really helps with the pain - I try to distract myself it is hard.

I am very sorry that pain is a constant battle. I think ET is one of those things that is manageable on its own, but that complicates other things. I have severe scoliosis along with the bad mitral valve (there's a corrollation, I guess), and yoga helped with back pain. But, honestly, I had to start with just lying in bed in neutral spine position doing deep breathing at first. Can do more now. Took care of the sciatica and pinched nerves. But I still am very bent when walking without a cane, and can't go distances.

I’m in absolute agony my head feels like it’s going to explode - is this the HU has anyone had this ..

Hi @jola13 Headaches are so miserable and it sounds like you have a doozy. I looked for other members who are taking HU and it looks like a headache with hydroxyurea can be common side effect.
Here’s the conversation with members @eileen11108. @ontheverge @sand103 @sregiani who’ve experience headaches while on HU.

~JAK2 V617F Essential Thrombocythemia: Hydroxyurea causes headaches
https://connect.mayoclinic.org/discussion/jak2-v617f-essential-thrombocythemia-hydroxyurea-causes-headaches/

Other possible relevant discussions where you might find some useful tidbits such as asking your doctor to reduce your dosage. That seems to be the theme when patients are having aggravating and ongoing side effects.

~People living with ET and taking Hydrea: Anybody setting
https://connect.mayoclinic.org/discussion/anybody-setting-records/

Actually in this discussion group that you’re currently in, this comment was made last week by @eileen11108 about her headaches with HU and the change in doses until her doctor found a balance.

I know reading is probably the last thing you feel like doing right now but I hope these help. If you haven’t, please call your hematologist and talk to them about your headaches. You don’t have to endure those when changes can be made.