I am a 74-year-old widow. In 4/21/21, I was diagnosed with ET. My platelets at the time were 1000+. After education at my Cancer Center, I learned the mutation of my JAK2 V617F acts like a broken light switch that stays "on" signaling the bone marrow to continuously pump out blood cells even when they aren't needed. I began taking Hydra—a 500 mg capsule a day. Numbers didn’t go down as much as the Dr wanted. I increased Hydra to two 500mg capsules daily. Numbers went down then up again. So, it went, each time Hydra was changed. That was the case until 3/28/26, when numbers were slowly going back up. I knew what the DR was going to say. At that point, I told him that I didn’t want to take more then two 500mg Hydra daily as side effects were too much. He knew that in August of last year, I had a hip replacement and some of the leg pains I had contributed to Hydra went away. I explained that the side effects got worse the more Hydra I took and it affected my quality of life. I know that I could have it worse. I’m sure a lot of you have had some of the same side effects…thinning of my hair and nails, gas, headaches, fatigue, brain fog, ankle/shin pains, neuropathy hands and feet; and if not hydrated properly dehydration pains, mouth sores, and other side effects that would come and go. That was another surprise as to how some side effects would come and go with out rhyme or reason. I also learned that stress does play a roll with ET. In March, 2026, the Hematologist (who I like) said he could put me on a different ET drug, called Anagrelide .5 capsule. As we know, there are very few drugs without any side effects. I had education on this Anagrelide, then an EKG, then a complete blood work up and then was told I’ll need blood work done 1-2 times a week. I will be seeing Dr at the end of this month to discuss results. My platelets dropped by 100 within 5 days and have gone down a few more after the 2nd draw. I felt better on this RX. Wondering if that could be the placebo effect? We will have to wait and see. I learned from pharmacist that Hydra would be out of my system in 3-4 days—but symptoms would leave little by little. With my new hip, I learned that I had to teach my muscles new memories. It may well be the same after withdrawal from Hydra—who knows? We will play the wait and see game just as I did with Hydra. I know that having a well-oiled Cancer Center and a support system that includes more than family are part of the reason my mental attitude is good. Just like with hydration, water is needed. The same with stress. As an ET patient, I know I need to reduce stress by using humor, mental/spiritual/physical insight, and lots of love for myself. Not looking back is a great mantra to have—as there is no possibility of a would have, should have, or could have. We have tomorrow
@msmac3 wow. What an upbeat person you are. I also have PV. I was recently diagnosed at age 79 and after my platelets went up around 50 points (close to 600) my hematologist has me now on 1000mg of hydrea daily instead of 500 when first diagnosed. I care stress normally and due to your above comments on stress I’m going to work doubly hard at being more “Zen” like. Great attitude you have on the way you have been approaching this blood disorder!