Essential Thrombocythemia: Making treatment decisions

I had bloodwork done again after 1 month on Hydrea. My platelet count went back up to 1,032,000 from 1,018,000 two weeks ago. It was 1,277,000 when I stated Hydrea. My doctor increased my Hydrea to 1000mg on weekends and 500 mg weekdays. I was disappointed in my platelet increase. I guess that is normal.

My count over three+years has varied, exceeded 1 mill a few times, rarely under 600. At one point as a seasonal I had two Hema's with the same therapy. I started with 500 daily which transitioned to 1000. At 1500 I had malaise and increased fatigue, now at 1000/1500 varied days. I'm on a blood thinner and lo dose. Hopefully you'll stabilize.

The first year on HU, my count bounced up and down.....finally stabilized after a year. Only time it took a big plunge was a week after my shingles shot, sort of scared me, thinking ET was progressing to PV, but then slowly went up but within normal range. Dr said count can vary from morning to afternoon to night....

Thank you. That is helpful to know.

Hello everyone,
I am new to this room. Just wanted to say hi to you at first.
Rose

Hi Rose. This is a great community where members come together to offer hope, encouragement and to share their experiences with each other. Welcome to the Blood Cancers & Disorders Group. Have you been diagnosed with essential thrombocythemia?

Thank you for all your warm welcome.
Yes, I have just been diagnosed with ET, it was in April 2024. I would like to ask you a question and hope you don’t mind.
Can I still contact with the chemical products like gardening, hair, laundry, nail, gasoline …etc….? As I am afraid to mower the lawn, fertilize the plants or dye my hair…etc…
Thank you very much,
Rose

Hi Rose, You were recently diagnosied with ET, which means your body is producing too many platelets. You most likely developed this conditon slowly over years. So, try to think of it this way, essentially, there’s nothing that has abruptily changed for you except that you now know about the conditon.

It’s difficult to know why this change occured and often there is no obvious assignable cause. Usually what happens is that our bodies can acquire mutations over our years of life creating defects in a DNA.

Having this diagnosis shouldn’t change how you enjoy yourself. If you are on medication such as Hydroxyurea, that may lower the efficiency of your immune system. So, while you can still do all your normal activities, you might want to wear an N-95 mask to offer a level of protection when you’re gardening or running the lawn mower to avoid fungal infections and you’ll want to take precautions such as keeping vaccinations up to date and following basic guidlines for keeping healthy like you would during flu season, etc..

It’s almost impossible to avoid chemicals in our daily life anymore. We have exposure from everyting including our environment. You can try switching to all natural products for laundry, cleaning and such. But even they can have harmful elements. I had a very aggressive blood cancer 5 years ago and quite frankly, while I’m cautious not to expose myself to things like Round up or other nasty lawn products, I pretty much live life like I did before. It’s important to not live in fear.

As far as dying your hair goes, this is an excerpt from the Cancer Society’s web page:
“It’s not clear how much personal hair dye use might raise cancer risk, if at all. S o far, most studies have not found a strong link between hair dye use and cancer, but more research is needed to help clarify this issue”. Here is the full link. https://www.cancer.org/cancer/risk-prevention/chemicals/hair-dyes.html

Has your doctor mentioned an involvement of mutated genes such as JAK2. Are you on a treatment plan to keep your platelets to a more normal level?

Yes, I did read your messages about yourself and others’s before I joined this group. It made me feel lot better as I was miserable when I got this diagnose in April. Thank you very much Lori for spending time to write and explained to me. I feel lot better and will keep in mind of what you suggested.
I am still on 81mg aspirin daily. My platelet level went up past one 1000 in May but it was going down in the last two blood test to 838. Will see what the specialist is going to do in the next appointment, he mentioned about Hydrea as I have had the symptoms as fatigue, pin and needles on the feet, light dizziness. In the last 2 months my iron level suddenly dropped to 3.9 so I was on iron pills and have been on B12, I still feel not balanced when walking though.
Yes, I was told that I had ET , platelet cells have mutated. Have seen the word Jack 2 on the report.
I am happy that my concern/question was answered as it bothered me.
Oh by the way, I live in Canada, and from a small town that ET is still even new to some of the medical staffs. So this room is what I have to not being alone with my sickness.
Thanks,
Rose

Joining this group was one of the best things, I have done. I feel so much better and not alone or scared anymore. I was afraid of Hydrea at first, but more afraid of having a stroke. I have been on it for 5 months and feel fine.