Anyone living with Essential Thrombocythemia with JAK2?

@williamsjen

I question the association of having Covid vaccines with developing ET.

I had relatively high Platelet counts (435-566) for at least 3 years before Covid testing or Vaccines were offered! None of my doctors then used the C word. This year a new primary care doctor started testing my platelets every 2 weeks. She referred me to a hematologist. I discovered that in my city they are all associated with a cancer clinic!!

My mother may have had this diagnosis, but never shared it with us.

@tree7737 Hello, that is very interesting my mom lived to be 95 years old and was never informed of this issue. My father who was in the Navy and worked on ships wasn't diagnosed either. There is so much going on in our area cancer from creeks, working in federal buildings that has asbestos and all other issues. I just treat it as a blood disorder and not a cancer. seem like the word cancer is used to obtain more funding and research. A lot of doctors do not diagnose it as a blood cancer so nor do I. GOOD LUCK...my platelets are staying in the 280 range so far.

@williamsjen my mother lived to 90, and I don’t think her blood issues had anything to do with it. She had a fall, ended up in the hospital for 11 days and her MD, (a close family friend 🧐)wanted to do angioplasty to clear her circulation. I had Healthcare POA and asked mother. She said no so I refused to sign do it. Tom Ganey (her MD) called me at 6 the next morning saying that if they didn’t do it, she might have to have an amputation! He said he didn’t think mother would adapt well to that at her age, so I caved and discussed it with her again. This time she agreed. What he didn’t disclose to either of us was that they would need to anesthesize her again the day after the procedure for a “look back” to make sure the arteries were still open.

She didn’t recover from that, even long enough to benefit from hospice.

@tree7737 what state are you in? just trying to see if this a nationwide . I am in Missouri

@cec2 A couple of comments. Unless you really DO the Mediterranean Diet, instead of "trying" to do it, you're not really doing it. Just one or two days of sugar or things not on the diet can cause symptoms to flare. If it is a birthday or during Christmas, you can certainly eat some things off the diet. But do it in moderation and not for a long time.

B vitamins are water-soluble. The standards for "normal" in the medical community are very low. You cannot overdose on B vitamins but you should limit B6 because it can cause peripheral neuropathy. SmartB6 makes a B complex with no B6 for people who want to prevent peripheral neuropathy, which I have due to my blood cancer. Hydroxyurea and other chemo drugs are notorious for causing peripheral neuropathy. Once you get it, nerve damage in your feet, especially, cannot be reversed. I suffer from it as a result of my blood cancer. It's not "fun" at all. As for multiple vitamins, you're not going to get too much of anything if it is a multi with moderate amounts of vitamins and minerals. Extra iron, unless you have hemochromatosis or another iron-storage problem, helps women especially, and men as well. It's your choice. The maximum safe level for supplements, for vitamin D, for example, is 4000 IU (international units). I take 3500 IU daily. No issues.

I also have Macular Degeneration (dry not wet). The best helpers for that (and general eye health) are Lutein and Zeaxanthin. These carotenoids are found in leafy green vegetables and protect the macula from damage caused by blue light. Vitamins C and E are antioxidants that help to reduce **inflammation** and protect cells from damage or further damage. Zinc and copper minerals support the **immune function** and have antioxidant activity. See anything I mentioned before? INFLAMMATION and anti-oxidant supplements.

It's all up to you what you do or do not do.

@tree7737 what state are you in? just trying to see if this a nationwide . I am in Missouri

@williamsjen Bassett Virginia

Are you taking a high dose of HU four days a week? I have never taken more than one 500 mg tablet, now at four days a week. My last lab was 515. That is great getting to 192 and I hope it stabilizes at that for you. LabCorp says 150-450 is normal.
Congrats! Eileen