I see a specialist as well. He said the specialist community is now thinking that for patients whose platelets are stubborn and can't be reduced without negative side effects of more medication that a number at 600,000 is now considered a good target. I do know the guidelines have changed but would have to google it to review again. If it were me, I would not be concerned about an 800,000 count but would be concerned about the rising trend. I believe a trend is considered to be three increases in a row. Have you had three increases in a row? Do you have blood work every three months? If you are concerned you can request to have blood work done sooner. I have done that in the past. Not necessarily have an appointment but just the blood work.

Delaying medication as long as possible is a good thing.

I have ET w/ the MPL mutation as well. Very rare. Little info out there. But I have found a few YOUTUBE videos. I am attending the Patient symposium at Cornell University in NY in November. And also the International MPN conference that follows the next 2 days. I would love to meet some of you there.

Hi Hannah,

I have a rare MPL mutation (MPL R102C). The most commonly researched, as per the scientific studies I found, is MPL W515L.
I am trying to find out more on my mutation, but there are very few studies.
I was diagnosed with ET in 2020 at age 38.
Like you, I am on baby aspirin and no other treatment.
Most scientific literature is on JAK2 mutations, most likely because MPL mutations in ET tend to happen in fewer patients.
I remember reading that MPL mutation tends to happen in older patients, but that could be an artifact stemming from the fact that this mutation started being used as diagnostic criterion later. Also, some of the pathogenic variants of MPL have been added recently. If I would have been sent for genetic testing before 2014, I would have been in the non-mutated category, as opposed to MPL positive as I am now.
I am quite unwell these days, but if I find newer studied on MPL, I will share them with you.
When healthy I used to be a researcher, and it is helpful to make sense of studies, especially when they claim a lot on very small data.

Many hugs of support,
Tatiana

Thank you! I’m relatively new to all this and I am also in favor of delaying medication as long as possible. I have not had 3 consistent increases and have had blood work every 2-3 months. I will continue to follow my doctor’s advice for now but am always curious about other recommendations. There does not seem to be a lot of consensus, especially regarding the MPL mutation. I really appreciate your response.

My platelets have been rising gradually over the past year and are now around 800k. My MPN specialist still says I only need a daily low dose aspirin and that the guidelines for treatment changed in 2018. Any thoughts? Thank you.