Conversation with an MPN Specialist: Focusing on Essential Thrombocythemia

MPN Advocacy & Education International spoke with Dr. Ellen Ritchie, Weill Cornell/NY Presbyterian, and answered numerous patients about their Essential Thrombocythemia diagnosis, symptoms, and the bright future of MPNs.

[PeterDay-nn]

I've just had my bone marrow biopsy due to my Platelets reaching 1072. My follow up isn't until
11th Dec 2023. I'm more than slightly concerned to say the least. I'm not on any medication as I've not been diagnosed with anything yet. I'm 52.

Update: 15th January 2024. After Royal Marsden conducted Geno tests, I have been diagnosed with Essential Thrombocytopenia. My pathway to ET is slightly unconventional & is taking the scenic route to get there. I sit in the 1%-4% bracket. Triple Negative. Claire Harrison from Guy & St Thomas' will look into my particular case. My symptoms are mid range. Next is a CT Scan, as my headaches are prolonged and regular. My full body aches are the most challenging to deal with, they're daily & worse after any activity. My calf and toes are also being effected. At least I know why I've been struggling for a long while now.

[valentinesouthest]

Thank you for this exceptional presentation. On the subject of bone marrow biopsy; I am known to have a high pain tolerance, birthing two large babies at home naturally, various operations and injuries, in the course of an active life and I can say I have never felt pain like the BMB. My blood pressure went off the scale immediately following the procedure, and it was impossible to reduce it. Subsequently I battled to get off BP meds for 18 months following the BMB. In my opinion it is inhuman to perform this procedure without giving the patient adequate oral pre procedure treatment. I myself will not have another without a light general.

[reddisa]

Interesting update on MPN/ET, many thanks

[kathyschimpf]

What a wonderful Dr. I have ET and have had it sense 2013, Hydroxyurea has worked wonderful for me.

[lindabomba]

So are you saying someone that tested positive for JAK2 mutation with a high platelet count doesn’t ET if they haven’t had a bone marrow biopsy?

[coconeedham]

I wonder if taking Hydroxyurea only twice weekly if it is effective controlling high platelets? Thanks for a great video.. Coco

[gsd]

Thank you for such an informative video. I am a female aged 69 from the UK, I have tested positive for the JAK2 mutation with a platelet count of 600, from a haematologist’s blood test I have not had a bone marrow test, so does that mean that I might not have ET if this has not been carried out?
TYIA.

[johnd]

I had a bone marrow sample took in 1993 (I've got ET) absolutely horrible.. got a small female nurse trying to punch through the back of my pelvis with God knows what, her feet were skidding on the hospital lino and couldn't punch through. She left and a big fella came in, said "brace yourself" and the instrument just went in straight in.... whack! I spewed up and my head was spinning...traumatised in shock looking back.
Can still feel exactly where the "punch" went in 31 years later, and the spot it went in hurt for about a decade after.
I had no monitoring after or information given before the procedure. Fucking brutal and I've always been a hard man. Would never have another, 56 now.

[BrandyPelt]

Platelet count of 400, 00 means that I am entering my danger zone. I have had a full blockage in the artery in my arm and a clot in my jugular, clot in my other jugular a few years later. These happened when my platelet count was in the 430's.
I have had numerous occasions where I knew I had a clot, but it broke up before hospital could do an ultrasound.
Aspirin no longer works for me. I take Hydroxyurea, Plavix and Xarelto and we still can't control my platelet count.

[janetcardenas]

I had bone pain from Hydrea after taking it for about ten years. Just an FYI.

[エハラペトロネラ]

interferon very expensive, can't afford it😢

[johnd]

Also it seems when they're asked...how long can you live on "hydroxycarbomide" as they now call it now in the UK. They don't know, simple as that, just keep going on about the "exiting" new drugs in the pipeline.
I'm more worried about taking hydroxy than my actual condition.