Essential Thrombocythemia: Making treatment decisions

@lynnebgraham I gather that, despite more research on MPNs in the last 15 years, a lot of info is not drifting down to clinicians very fast. My new GP, who is in her late 30s, said that she had never heard of the CALR mutation. "It's not in the textbooks." Then they're on to something they actually *do* know about. She was all over my hearing problems.

I'm all for not rushing medical trips. The days when I could hit the road at 5 a.m. and make sense to anyone three hours later are long gone.

Yes, I have found that there are a lot of medical professionals out there, who have never heard of MPN's. Hopefully, they are interested enough to look it up and have some knowledge before your next appointment. I thought CALR was one of the most known mutations. We are lucky to be on this site, get a lot of information and help on here.

Hello everyone. I am new in this group. I am years old. 3 years ago diagnosed with Esential Trombocitosis. My platelet count was around 700 only 1 time and now are used to be around 460. I am not on medication ecxept the aspirin protec 100mg prescribed to be taken every night.

@dorjana Hi.
I believe this page provides competent and detailed information.
Mayo Clinic Q and A: What causes a high platelet count:
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-what-causes-a-high-platelet-count/

If you are 50 years old or even 40 years old, and have platelets that high, if you have had a BMB and been diagnosed positively for ET, I am amazed your doctor is so nonchalant about things and has not already put you on both baby aspirin and HU. Hydroxyurea has been used for approximately 47 years. So, there is a huge volume of studies and knowledge of reactions and side effects associated with it. Many people take it with no side effects at all. Some, like me (I have taken it for one year and started once my PLTs hit the 800 mark), have mild itching and a very mild nighttime feeling of being warm and sometimes damp, but not really the "night sweats." No actual sweating.

After 6 months, my platelet count was down to 450k, and has remained in that range ever since. The "side effects" are well worth not taking the risk of a heart attack, stroke or other serious event. I am amazed at those who say they are "afraid" to take hydroxyurea, when the chances of any severe reaction to it are very low, and taking it, even if it causes some itching (so does ET itself in many people), or other mild side effects that can be managed, can prevent a deadly event.

Almost all medications I have ever taken or read about in my lifetime (I am over 70) can have mild-moderate-severe side effects, including many OTC medications used for colds, flu, and other things. Again, in my mind it is not even a question if I take HU or not, since not taking it, (especially if I was over 1 million platelet count), would really be risking my life, or taking the risk of becoming disabled due to a stroke.

ANY specialist in MPNs, especially those at Mayo Clinic, MD Anderson, and other cancer centers, would tell their patient with a 1 million+ PLT count they wanted them to take baby aspirin and hydroxyurea if they had a Bone Marrow Biopsy and all other blood tests and had confirmed ET. Obviously, the patient can refuse.

I am 71 so higher risk. so far so good on Hydra started in May. Random things happen and then go away. Burning on my shins, mouth burning the most is some days I am really tired. Usually comes on suddenly but a nap and all good. I take 500 mg daily and my plates were 297 at last check will have a check on the 19th . Feel tired more and beginning to feel the cold. Which is not usually me . Have not had any sickness at all to pill at night and was having nightmares so switched to morning . I do have other issues in the bathroom but I take Miralax and that works. Good Luck

@nohrt4me
I feel you not a morning person . I have had hearing damage for years but it is worse . Also I have some brain fog which bothers my Husband more than me.
Have a wonderful Turkey Day

@vickieannb57

Excellent work on bringing down your platelet count!

A lot of us with ET feel greater sensitivity to cold. My guess is that it's our impeded blood circulation.

I looked online for a garment my grandmother would have called a "chest protector." Didn't see anything, so I sewed a doubled layer of plush fabric onto the front of a camisole.

Works like a charm. Perfect for morning dog walks.

@janemc Chest protector, great idea! Somebody in my knitting group has patterns from the 1940s and knitted one. It's like a long dickey, if anyone remembers those. I knit fingerless mitts and cowls to go with my flannel shirts and nighties. Silk long johns are also a must in winter. Can you tell I live in Michigan? 🙂

@nohrt4me I probably won't be able to tell what is making me cold this winter. I have Renaud's disease, metal implants in my ankle and hip that are new this year and now the hydroxyurea to add to the Connecticut weather. lol Time to pull out my winter robe and stock up on hot teas.