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I am back now with more information as I met with a hematologist on December 8. The doctor suspected ET and ordered numerous blood tests. I have most, if not all of the results of those tests. The FISH myeloid panel to detect CML is normal. Other than high platelets, the blood smear is not remarkable. The genetic testing did show that I have the Calr mutation. A bone marrow biopsy is recommended so the doctor and I will likely discuss that at my next appointment on December 29. I continue to feel fine..no sympoms.
I am interested in hearing from others with this particular mutation. And while I doubt I will question the diagnosis I may ultimately receive, I may question the suggested treatment. I have started reading some materials from doctors at respected institutions who do not necessarily prescribe hydroxyurea to asymptomatic women in ET, regardless of age.
Replies to "I am back now with more information as I met with a hematologist on December 8...."
I have ET and am CALR + . I was diagnosed at age 60, but onset likely about age 54. I am 68 now.
The doc probably will assess need for meds based on your IPSET score, which looks at age, mutation, and history of clots. Those of us with CALR clot less frequently than those with JAK2 mutation. So if you are under 60 and have not have a clot, you may be told to take a daily baby aspirin every day.
Assuming all goes well, you may not need to take other meds until your platelets approach 1,000. At that point, you run the risk of von Willebrand Syndrome, a bleeding problem. My dad developed that along with clots because his ET wasn't diagnosed until his platelets were sky high. It was quite a mess for a year or two. He eventually got things under control.
Platelets will go up, but I don't think there is any predictable rate. Everyone seems to be different. It took 10 years from ET onset for me to hit 800. By that point, I was too fatigued to work full time. The hemo recommended HU, and I actually felt better on it. I wish I had started it earlier because I would not have had to take early retirement.
There is a lot of fear mongering about HU. Some people can't tolerate it at all. You can discuss anagrelide and Interferon with your hemo. Try to get him/her to talk about medication options well before the need arises. That gives you a chance to figure out what will work best for you and what your insurance will pay for.
Good luck! It's all so confusing at first, but it gets better. I am 68 and doing ok.
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Hi @mtnlife, It’s wonderful news that there’s no sign of CML or other blood cancers. So now it’s a matter of getting the bone marrow biopsy to examine the marrow cells. That’s the heart of the immune system and the home of blood manufacturing. It’s a beneficial test to check the health of the bone marrow.
@nohrt4me, @wa34937 @koryw208 all have ET with the CALR mutation. Essential Thrombocythemia is generally slow to develop so you might not need any treatment for some time.
It’s interesting you’ve been finding articles that suggest asymptomatic women wouldn’t require hydroxyurea regardless of age. I’m curious because of the possibility of blood clots with elevated platelets. Are they saying no treatment at all? Or just the hydroxy?