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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (675)Comment receiving replies
@circawdm
Thank you so much for your reassurances about HU. I've read a good bit about it and the research done with it and other meds prescribed for ET, and HU does (for most people) seem to be the treatment with the fewest side effects and the best tolerated by most. If I have to go on a chemo pill, off the top of my head that's the one I'd prefer unless my specialist has a very good reason for prescribing something different. I also know that many children are on HU for sickle cell disease. It sounds as though we with ET should be very thankful for HU.
My h/o put me on one low dose aspirin immediately and said if my platelets went above 600k he would prescribe a chemo pill. My primary care doctor at my last checkup increased that to two a day related to prior cancerous colon polyps. (He said there is some evidence aspirin may help prevent those, and I'm now at an age where yearly colonoscopies aren't advised.) Your advice about taking one with breakfast and one with dinner in the evening makes sense so that's what I'm doing.
I try to incorporate a lot of the Mediterranean diet into my meals. I don't sleep well but I've had that problem for years. What anti-inflammatory supplements do you recommend?
I do have to watch adding to my supplements because I'm already on a large dose calcium and D supplement for osteoporosis of the lower spine and hip, and on AREDS2 eye vitamins for macular degeneration, both on my doctors' advices. I discontinued my daily multi-vitamin for women because of the other two. When my PCP checked my iron and B levels because of my increasing platelet counts, those levels were normal.
Thanks so much for your very helpful post and best wishes for good health.
Replies to "@circawdm Thank you so much for your reassurances about HU. I've read a good bit about..."
@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.
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@cec2 First, if you are not doing the low-inflammatory diet strictly, forget the supplements, because you are undermining your body if you are not avoiding high-inflammatory foods. This means eating/ingesting NO processed sugar, NO alcohol, and no fried or fast food. Use extra virgin olive oil for salads and other uses. It is recommended to take 2-4 tbsp daily. Olive oil is a super anti-inflammatory "food." Little red meat only. Fish and chicken only, otherwise. Fatty fish are better. Caffeine is also a nerve irritant and an inflammatory agent. If you are doing that, the basic anti-inflammatory things I take and many others take would be Omega-3 Fish oil caplets daily, Vitamin C, D3, and E. I also take L-Carnitine, a B complex (medium dose), and 2-3 things specific to peripheral neuropathy for my feet nerves.
All of these things *must* be combined with 30 minutes of any exercise daily. Walking is easiest for most people. Maintaining a normal weight is also essential. Keep stress LOW, because high stress has been shown to raise platelet counts. Also, getting 7-8 hours of sleep daily is essential for recovery, building healthy blood cells, and supporting your immune system, among other benefits. I hope this is helpful. **Ask you are doctor before taking the supplements.** Most doctors poo-poo them, but they have been studied for 20-30 years, and new research shows these antioxidants and anti-inflammatory supplements can be beneficial! Unless you are on blood thinners aside from baby aspirin, these supplements should be fine and even more protective. - DRT