Essential Thrombocythemia: Making treatment decisions

@scienceteacher Ouch! Renaud's can be very painfil, too, no? Yes, get out the cold weather stuff. I love my hot water bottle.

Many of us have erythromelalgia, reddening and burning of palms and soles. Sometimes prickles run up my lower legs. I try to keep moving to encourage circulation. Menthol gel seems to reduce the sensation for me, but the cats hate the smell and shun me. 🙁

@nohrt4me Hi, all went well with my trip down to Hobart, for my second mammogram and ultrasound, so glad it was a good result. Wish they had the 3d mammogram up in Launceston, would have found out then it was okay. Only have one in the state. So thats over with, phew, now for the thyroid surgeon on 1st. Hope you are well.

@lynnebgraham So glad that is over for you. Fingers crossed for you with the surgeon. Did you get a sense whether surgery was likely from your referring doctor?

@nohrt4me he was very non committal. Did some research on the thyroid surgeon, and she does remove nodules, so that is good to know. They are growing so something has to give. No need to remove thyroid as there is nothing wrong with it, will see.

@swalex
Thank you for the valuable info on the types of ET and what to expect. I was diagnosed in 2014 and have been on Droxia and aspirin since 2015. My platelets fluctuate quite a bit and we cannot find the reason for the inconsistency. (Ranges from 500+ to 800.) Medication has been increased to 800 mg daily, and numbers still are in the 6-700 range. If you have any suggestion as to a resource for fluctuating platelet counts for someone with ET and JAK2 mutation, I would really appreciate it.
Thank you kindly,
Mary

Hi Jean, hope you had a fabulous christmas.
Saw my Thyroid specialist, who has recommended that I have half with the nodules removed. She showed me a drawing she did of the size of the nodules and the actual size of my thyroid. Was an eye-opener. She wants this done as soon as it can be arranged. However, because of my rough voice, sounds gravely, I have to see an Ear Nose and throat specialist, yes again a trip down to Hobart. Have an appointment with him end of January. Not sure what to expect, though.
On another note, I had blood tests done as I see a new dr at Holman Clinic in Launceston on 8th. I noticed that my GP has put on it, Polycythemia not Essential Thrombocythemia as all of my previous blood tests have stated. I dont see him till end January to ask. Now I am confused as to what I have!!!!

@lynnebgraham

You're dealing with so much uncertainty, and the long drives for medical care must be exhausting.

I'm really sorry for all you're going through. Fifteen years after an ET diagnosis, suddenly you see PV on your chart??? The MPN universe is utterly baffling.

Please get as much rest as you can. And whether it's Christmas cookies, a good book or a gentle stroll, please do something nice for yourself -- every single day.

@lynnebgraham
if the practice has a WaitList for canceled appts, pls get on the list.
And talk to your primary care physician for guidance.
Did your doc send labs/test results or call to move up your appt?

I have been on hydroxurea and aspirin since last February. My platelets were over a million plus. They are now down to 500,000. I do have the calr t gene.
Things have improved like blood pressure, cholesterol, vitamin d level, body aches since I went on the hydroxurea. I can’t say for sure that it is because of the hydroxurea, but I do wonder. I just see my hematologist every six months and have monthly cbc dif tests that monitor how much hydroxurea. I am 73 and stay active. They don’t know how long I’ve had it since the last time had my platelets tested was 13 years ago.

@lynnebgraham Polycythemia?! Is anything but platelets off on your blood tests? I'd check with the PC. I bet it's a brain fart on his part. Or autocorrect on his computer. I notice that every time I type in "thrombocythemia," my computer changes it to "thrombocytopenia."

Well, boo to surgery and running around for medical things! Will the lumps grow back? Any ideas what causes them?

I have a gravelly voice, too! We should form a singing duo!

Thanks for the update. It would sure be good to know if any of these ailments are related to ET. I am updating my gall bladder saga over on my high LDH thread.

Our Christmas was very low-key but enjoyable, and I hope yours and everyone else had a good day, celebrating or not.