Essential Thrombocythemia: Making treatment decisions

@lynnebgraham
Hi Lynne,
I was diagnosed with ET 4 years ago and only had platelets that were high and with HU only 5 times a week kept everything in line. This year all of my blood cells rose and we kept increasing HU so that now I am up to 14 per week. I consulted at Cleveland Clinic an that Dr. thought that I may really have PV. After appealing United Healthcare decision I was just able to submit blood for myeloid gene panel to see if any other gene mutations may point to PV. However, my Dr. in Maryland says treatment at this point would be the same or if needed dif. meds that required PV diagnoses then she would change it to that. For now seeing if the increase in HU will stabilize. So maybe the PV in order to justify different drugs and I am not always sure it is a clear cut diagnoses.

Tammy, 63 ET since 2021

The surgeon wants to only remove the right side of my thyroid. The left has only tiny nodules and not grown much. Hate when they tell you all the things that can go wrong though, especially when you need to have it removed. Have to see ENT first, so hopefully sooner than later. Christmas was quiet, just me and David. All family live on the big island (Australia) so technically I live overseas LOL. Look after yourself. Not a bad idea, would sound pretty sexy 2 gravelly voiced ladies singing.

@lynnebgraham We must be related! Same age range, same weird ailments, same voice, both with husband named David.

Take care and keep us posted on the surgery.

@janemc I have started reading again, so many books I have collected. Will keep me occupied for years lol.

Hi! I just started it yesterday. I was super afraid, but it seems like people have been using it for 20 years, and doing well. I’m going to try and figure out what I can do nutritionally to help. I’m also very concerned going back to work as a preschool teacher because the drug affects your immune system. I thought of wear a mask but my sister says it’s bad to breathe your own breath for hours. I guess it might depend on how you want to live your life on this drug safely? It’s pretty powerful to kill all cells that’s what I get out of it. Let’s keep in touch on our journey 😊

@nohrt4me could meet up for karaoke 🎤 😅

Good morning, @dragonflylynda. I just had to check in to see how you’re doing! I see you finally started taking your medication after much trepidation. The first step towards getting your high platelet level under control. That’s a good thing! ☺️

You’re now taking a medication which may impact your immune system. With a weakened immune system it may not be able to respond and defend you as quickly or as efficiently when you’re exposed to air borne viruses, bacteria or fungal infections, which can enter through your nose, mouth and eyes. Your best bet is to cover your mouth and nose with a mask. Also avoid touching your face or eyes without out washing your hands first. And…keep your vaccinations up to date.

Let me help you with your masking decision…which is what you should do as a preschool teacher to avoid all the delightful diseases you can pick up from the little germ bombs! I know there have been conspirator theories the past few years since covid about mask wearing and the ‘dangers’ that lurk from spending hours with your face covered. Please, don’t buy into that! The right masks DO work and can help prevent so many airborne communicable diseases…without endangering the wearer! Good grief, I worked in the dental field for over 30 years, wearing a mask 8 hours a day, along with my coworkers. Doctors, dentists, nurses, surgeons, etc., all wear masks daily and their brain cells are intact. There are documented studies which show the efficacy of masks and there is no proof of any harmful side effects of wearing them. Being immune compromised myself I still wear masks out in enclosed public places, crowed stores, elevators, around children, etc. It has kept me safe for 6 years since my bone marrow transplant. I was lax one time this last summer in a high exposure event and got Covid, which I’d avoided to that point.

The ideal masks at this time are N-95 or KN-95 masks. Most are comfortable, some are colorful so you can coordinate with your clothing. There is no shame or embarrassment in wearing a mask. Since you’re in a preschool setting you can use this as a teaching opportunity to the kids about your mask. You can even draw a smiley face on the front if necessary. But considering the level of germs working around pre-schoolers, masking up will help keep you safe.
Do you have any N-95 masks?

I am 73 years young! In April, 2024,I was diagnosed with ET, CALR positive, JAK2 negative. My initial platelet count was 646. At that time, I decided not to take the recommended hydroxyurea, but after a bone marrow biopsy confirmed the diagnosis, I decided to take the medication in March, 2025. After 9 months on the medication, my PC is down to 447. The medication has worked to lower my count. However, I have lost 2 teeth and have had tremendous hair loss. So I have decided to stop taking the medication and am utilizing acupuncture and Functional Medicine alternative treatments. I have agreed with my hematologist to have monthly blood draws to check my status, and will meet with her in February to assess my situation. I have never had any symptoms from ET, take no other medications, nor have any other co-morbidities. To control arthritis I eat an anti-inflammatory diet, work out at the gym 5-7 days/week, take my supplements, and have maintained my weight from the 25 pounds I lost 9 years ago. I feel all of the things I do regularly make me a lower risk for a stroke because any pharmaceuticals I have ever taken cause serious side affects, especially hydroxyurea.

I have been on 500mg daily of HU since November 11. Over the years my platelet level slowly increased until I reached 560 and then I broke my ankle and a few days later my hip in March so I underwent two major surgeries 4 days apart. That triggered a major increase in platelet level to over 1,300 on March 25 while in rehabilitation. I was diagnosed with JAK2 in September. Since I started the HU my level has gone down from 623 to 434 in 6 weeks. I will be trying 500mg 5 days a week to see if I can maintain a "normal" level. So far I have had no side effects that I can detect but at 71 it is sometimes hard to determine what is medication and what is aging.
Don't be afraid of the medication. Just monitor yourself and speak to your doctor if you detect any issues. Get blood draws as often as required and keep an eye on all the other levels, not just platelets.
The best of luck to you!

@lehall125
You and others might find my experience informative. I was diagnosed with essential thrombocythemia about 10 years ago (JAC 2). Hydroxyurea worked well for me for about 8.5 years, until suddenly a painful ulcer appeared on my ankle. For six months, it would not heal, despite much testing, visits with specialists and treatment at a wound care center. After eight months, I stopped the hydroxyurea, at which point it immediately began to heal.

Four months ago, I began with Besrimi (bi-monthly injections., 150mcg). I have had no side effects and with with minimal dosage have been able to reduce my platelets to about 300.