Essential thrombocythemia

A former seasonal resident I had 2 Hematologists, both concurred on my treatment. I started at 500, platelets would vary, been over 1 mill, went to 1000 daily to get high 500's, for an inexplicable reason I'm back to high 700's. I've tried varying doses, now it's the every other day regimen. I've been getting monthly tests for years. I'm on Xarelto for a vaccine caused cardiac ablation.

I just saw this article and thought you might find it interesting

" The Nurses’ Health Study found that those who worked at least three nights per month, in addition to their day and evenings shifts, found a higher risk of breast cancer — especially among women who worked 30 years or more on the night shifts.

Previous research also revealed higher mortality with short sleep durations, prescription sleeping pill use and sleeping too much (> 8.5 hours), Sidhu added in an email.

man sleeping
"Healthy sleep" is not only about getting sufficient quality sleep on a consistent basis, but also having regular bedtimes and wake times, according to a new study. (iStock)

Recent studies also show that unhealthy sleep patterns lead to worse outcomes.

A recent international study found a significant association between sleep impairments and the risk of acute stroke, noting a cumulative increase in stroke risk as sleep symptoms increased, according to research published in Neurology this May.

The risk of an acute stroke increased with sleeping less than five hours, sleeping more than nine hours, poor sleep quality and symptoms of snoring.

Sleep for 7-8 hours on a consistent basis
Getting "7-8 hours of sleep of regular consistency (to allow normal circadian rhythm) reduces risk from a number of causes of death (accidents, cardiovascular, cancer, etc.)," Dr. Sidhu noted in an email."
Gina5009

Hello. My mother just celebrated her 81st birthday and is struggling with ET and side-effects from Hydrea. She is able to be active before her daily dose, but afterward suffers from blood pressure spikes, extreme weakness and fatigue, tremors and more. She goes to the ER every month (it used to be weekly) because she is frightened she's slipping away. Can anyone share how they have managed side effects? Any resources she could use? I’m asking for her because she lives 1000 miles from me and is not able to search for herself.

She needs to alert her doctor about these side effects and get his/her advice. Her dose may need to be adjusted, or she may need a different medication.

Thanks. Her doctors have said doing NOTHING is an alternative and that the other medications have more side effects. They also say she is on the lowest dose to control her platelets. Since this is the only option, we are hoping to learn coping skills from patients of this rare illness. Thanks!

Hi @pjrockz88 Your poor mom sounds like she’s really having a tough time with the Hydroxy she’s taking for ET. From conversations with other members in the forum, it’s generally really well tolerated. However there are some people that have unpleasant side effects, like your mom.

There are other treatments on the market, besides Hydroxurea, for people with myeloproliferative diseases such as ET and PV.
These three are listed as second line drugs when Hydroxy isn’t tolerated:
~Busulfan https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5995877/

~~~~~
~Pipobroman
https://pubmed.ncbi.nlm.nih.gov/11886392/
~Anagrelide
https://pubmed.ncbi.nlm.nih.gov/27497846/
I can’t imagine why her doctors won’t consider switching your mom to one of them. She’s already experiencing debilitating side effects from the HU…difficult to imagine how that would be worse?

Because our bodies don’t process meds as efficiently as we age, it’s easy to be over dosed. When you say your mom is on the lowest dose possible, do you know what her daily dosage is of Hydroxy?

500 mg daily. Her doctors have tried taking her off of it one day a week. And previously they even tried alternate day dosing. But every time, her platelets spike and she ends up in the ER. Thanks so much for the suggestions so far, keep them coming. My mom also experiences an extremely painful burning sensation in her legs and her thighs and ankles swell severely.

The HU does sound like it’s working in reducing her platelets, but it just seems this is pretty rough on your mom. I’m sure this is frustrating for her doctors as well as your mom and ultimately, you because you’re so worried for her. I hope they might consider one of the other potential medications to see if they’re beneficial with possibly fewer side effects.
It’s not easy when you live so far away from your mom. Does she live by herself or in an adult/assisted living community?

I have had ET for two yrs. I take five hydrea pills ea week(500 mg). It controls my platelet level. No problem. Trust me, taking chemo pills is better than a stroke. My platelets count is kept at about 500-550 which is fine. You’ll be fine. Don’t let the chemo word intimidate you.

It might help to know which driver mutation your mom has and what her platelet counts are now. If I were 81 and had the CALR mutation with platelets below 1,000, I might decide to forego treatment and forget about the ET altogether. In that situation, I would not be likely to throw a clot (if I had no prior clots) or to get acquired Von Willebrand's from the high platelets.

Dad had ET and stopped treatment when he went on hospice for end stage emphysema at age 81. He lived another year without problems from stopping ET treatment.

I don't doubt your mom is having a reaction to the HU, but I would also wonder if your mom is having some severe emotional responses to her diagnosis and feels alone. My mom and her sister visited the ER frequently in their 80s before being diagnosed with mild dementia. They were overwhelmed by their health problems (heart disease and COPD), and the ER was the only place they were getting reassurance.

I know it is very hard to have an ailing parent far away. You might contact senior services in your mom's locale to see if she can get a visiting nurse or just a visitor who looks in every few days.

Please don't take any of this as advice, but it might help you open up lines of communication with docs, mom, and potential helpers.