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Is my treatment a bit aggressive?

Blood Cancers & Disorders | Last Active: Jun 15 5:05pm | Replies (19)

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@mdterp76

I had similar numbers as yours when diagnosed in Jan. 2023 at age 69 with ET/Jak 2, no bone marrow test. My oncologist wanted to start me at HU 500 mg. 3/days week. I accepted 1x week for HU 500 mg, daily iron, and daily baby aspirin. After 18 months, I have settled in at 4x week with HU, 500 mg with each dose, daily iron, and daily aspirin. I'm not anemic, but I do have low iron levels. My platelets are in the low 500s after jumping back to 800K in April 2024. and I see the oncologist for blood work every 6 to 8 weeks depending on my numbers. I feel okay with some fatigue and very dry skin and dry eyes. How is your spleen? If it's okay, you may be able to drop back a bit on HU with the doctor's agreement. You may want to get a second opinion. Make sure your eyes are well protected. In the last year, I've lost the vision in my left eye due to corneal scarring. I had no injury or infection. My only change has been taking HU and having this blood cancer diagnosis of ET. I'm using lubricating eye drops 4 x day, plus prescription steroid eye drops for the eye with the scarring, 2-4 times daily to prevent further scarring. My right eye is fine, so I can drive and do my hobbies. I also had retinal hemorrhages in both eyes 6 and 7 years ago. Retina issues can be related to ET. Some loss of hair, but I had a lot so not too noticeable. I also take B12, Vit D, calcium, multivitamins, and Tumeric. Of course, consult your doctor before adding vitamins or herbals. I drink lots of water, green tea, and OJ with my iron. I stay away from processed foods. Take care, keep active, and eat healthy!
Karla

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Replies to "I had similar numbers as yours when diagnosed in Jan. 2023 at age 69 with ET/Jak..."

Thanks for the info. I will be more diligent about my annual eye exam, as the retinal occluclusions associated with ET were off my radar. I see that ophthamlology journals do note this.

"Previous reports in the literature have discussed the presentation of essential thrombocythemia in association with ocular manifestations, most commonly presenting with central retinal vein occlusion, branch retinal vein occlusion, or central retinal artery occlusion."

From a 2021 article in the Canadian Jrnl of Ophthamlology
https://www.canadianjournalofophthalmology.ca/article/S0008-4182(21)00416-6/fulltext