Essential Thrombocythemia: Making treatment decisions

Sorry to hear, and yes I keep trying to find alternatives but I expect I will have to go on it in the end!

My platelets are continually being depleted, Having transfusions at least once a week. 8 to 44k range I have been diagnosed with PNH, am currently on Ultromiris, Promacta, and Nplate, so far, no changes. Anybody dealing with PNH, any info would be appreciated.

Here is a good webinar

https://www.nccn.org/patients/guidelines/content/PDF/mpn-patient.pdf
Here is a wonderful resource.
I have had ET since 2003. I am 70 yo now. I find this site informative.
Let me know what you think.

Also 70, ET-CALR x 15 years. GREAT RESOURCE! Thanks for sharing.

Wish that doctors handed a link or copy of this to pts on diagnosis. Would prevent a lot of scary late-night appointments with Dr Google and bad treatment decisions.

It would also be good if there were a section on what patients can do to improve their health: reducing overall clot risk and fatigue factors. I think if patients understood that there ARE things they can control and improve, they would be less likely to freak out about the meds.

I think that the mental aspect of having a rare chronic cancer could also be discussed, not just fatigue and brain fog, but of feeling isolated and frustrated.

Thanks again!

Similarly I was diagnosed around 54 with platelets in the 600s. Had been on baby aspirin for cholesterol already, so I've continued to do that. I go in for new blood draws every six months and unfortunately the numbers have steadily been going up.

Like you, my doctor has considered me "low-risk" (generally healthy in other regards) but I suspect that when I reach 60 and/or levels larger than 1M we will be discussing some medication. We've never named any specific drug or dosage - I've appreciated lurking on these boards and learning what others have tried and their experiences.

I am 51 and I am low risk. I was told by an oncologist that until I reach age 60, have a stroke or reach platelets over a million I would be put on medication. I was taking baby aspirin only at first. My platelets reached over a million. I went back to oncology and saw a different doctor, since mine retired, He gave me the choice to start Hydrea or wait. He had said that there were studies with follow up of 10 years,whether people treated by observation, aspirin, cytoreductive therapy alone or aspirin with cytoreductive therapy there were only 2 arterial thrombotic events, and one venous thrombotic event. I chose Hydrea and have been on it for almost one year. My platelets went down to 445,000 and no side effects.

Hydrea

That is great to hear your success story. I also had a sonogram on my legs looking for deep vein thrombosis and that came back clear.

The possible side effects have made me nervous about starting any meds, but I also am not crazy about taking await and see approach either.

Regarding HU. My wife (Becky) has been on Hydrea since mid September 2024. She initially started with 500mg/day, every day. The affect on her platelets wasn't enough so her oncologist put her on 1000mg 3 days per week and 500mg on the remaining 4 days. So far the platelets are being reduced to a better level.
The main point I want to make is that she has zero side effects and hopefully it will stay that way.
Good luck to all who are managing this and other MPNs.
Steve
ps. She is 72 so I guess high risk and her platelets were at 629 when she was put on HU and now they are down to 402. HU dose is still being adjusted with monthly blood tests.

I too am 72. Taking 500mg/day w/2 baby aspirin. Only side affect has been periodic sensation of sun burned shins — but lasts only minutes then goes away. And I’ve only noticed it when I spend time sunning in the pool. So good luck to you … and to all of us! 🍀