@arti4
Thank you for your reply. Yes, our stories do seem very similar, although my tiredness doesn't seem nearly as severe as yours. But it's hard to know the cause and people all age differently, too.
I, too, am now on two low-dose (coated) aspirin a day. Do you take one twice a day, or both at the same time? When my primary care doctor doubled mine, he didn't say and I didn't think to ask.
600k seems to be both our threshold platelet counts for having to go on HU. I too am dreading that, but with the one recent exception when my count decreased, my counts have steadily only gone up.
I wish you the best in managing your ET and for good health.
@cec2
FYI: I take one low-dose aspirin in the morning and one in the evening. Nobody told me either, about whether to take them together or not. But when I’m asked about that, they’re satisfied that that’s the way I’m doing it.
Best to you.
@cec2
FYI: I take one low-dose aspirin in the morning and one in the evening. Nobody told me either, about whether to take them together or not. But when I’m asked about that, they’re satisfied that that’s the way I’m doing it.
Best to you.
@arti4
Thank you for your reply. Yes, our stories do seem very similar, although my tiredness doesn't seem nearly as severe as yours. But it's hard to know the cause and people all age differently, too.
I, too, am now on two low-dose (coated) aspirin a day. Do you take one twice a day, or both at the same time? When my primary care doctor doubled mine, he didn't say and I didn't think to ask.
600k seems to be both our threshold platelet counts for having to go on HU. I too am dreading that, but with the one recent exception when my count decreased, my counts have steadily only gone up.
I wish you the best in managing your ET and for good health.
@cec2 Hi, if you don't mind, I'll add my information here. I am ET with JAK2 also—age 76, male. When my platelets hit 600, my hem/oncologist told me to take one or two baby aspirin 81 mg/day. I did some deep research on it from many different medical articles. Many doctors suggested their patients split the dose, with one aspirin in the AM and one with or after. The reason was that research showed that the risk of thrombotic cardiovascular events, such as heart attacks and strokes, peaks in the morning, particularly between 6 a.m. and noon.
So, taking one in the evening ensures you still have a high level until you take your morning baby aspirin. Made sense to me! So I take mine with breakfast or after breakfast, and with dinner or after dinner.
As far as "dreading" hydroxyurea, please don't have anticipatory anxiety about it. It's been used for 47 years, and many people have no or minor symptoms. I started it 8 months ago at 500 mg/day, and my symptoms are very minor, off and on, skin itching (not a big deal), and sometimes feeling a bit sweaty at night. But I do not sweat much at all—no soaking sheets or T-shirt—and it is again, not painful or very bothersome. I wear bamboo fiber tees and jockey shorts to "wick" away moisture. But as I said, it is a minor percentage of people who have side effects bad enough that they need to quit. The alternative 1-2 drugs have different and, in many cases, worse side effects.
If you want to keep all side effects and also your cancer as stable as possible, switch lifestyles if you have not read about the importance of low-inflammatory diets, daily exercise, weight control, taking anti-inflammatory supplements, stress control, and 7-8 hours of sleep nightly. The Mediterranean Diet and supplements like Omega-3 Fish oil caplets daily have improved my quality of life more than anything else. Those lifestyle changes also keep platelet count lower (high stress raises platelet counts) to a healthier level.
@1995victoria
Thank you for that info.
I just did a brief search and found several articles that related to Shingex causing too-low platelet counts in people who do not have ET. For us with ET, a reduced platelet count is probably not a bad thing. I'm now wondering if I can thank my first shingrex shot for my reduced count that otherwise would have probably gone up to the dreaded number 600k.
I'm thankful I can get my eye surgeries done before I have to go on HU, presuming I will at some point. I'm one of those people who are peculiar about doing more than one new thing to my body at a time! LOL
@cec2 Hi, if you don't mind, I'll add my information here. I am ET with JAK2 also—age 76, male. When my platelets hit 600, my hem/oncologist told me to take one or two baby aspirin 81 mg/day. I did some deep research on it from many different medical articles. Many doctors suggested their patients split the dose, with one aspirin in the AM and one with or after. The reason was that research showed that the risk of thrombotic cardiovascular events, such as heart attacks and strokes, peaks in the morning, particularly between 6 a.m. and noon.
So, taking one in the evening ensures you still have a high level until you take your morning baby aspirin. Made sense to me! So I take mine with breakfast or after breakfast, and with dinner or after dinner.
As far as "dreading" hydroxyurea, please don't have anticipatory anxiety about it. It's been used for 47 years, and many people have no or minor symptoms. I started it 8 months ago at 500 mg/day, and my symptoms are very minor, off and on, skin itching (not a big deal), and sometimes feeling a bit sweaty at night. But I do not sweat much at all—no soaking sheets or T-shirt—and it is again, not painful or very bothersome. I wear bamboo fiber tees and jockey shorts to "wick" away moisture. But as I said, it is a minor percentage of people who have side effects bad enough that they need to quit. The alternative 1-2 drugs have different and, in many cases, worse side effects.
If you want to keep all side effects and also your cancer as stable as possible, switch lifestyles if you have not read about the importance of low-inflammatory diets, daily exercise, weight control, taking anti-inflammatory supplements, stress control, and 7-8 hours of sleep nightly. The Mediterranean Diet and supplements like Omega-3 Fish oil caplets daily have improved my quality of life more than anything else. Those lifestyle changes also keep platelet count lower (high stress raises platelet counts) to a healthier level.
@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.
@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.
@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
@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.
@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.
64 year old black female just wondering were this is coming from. I contribute this to having the covid vaccination as my blood work was always good until I took the shoot. I will start taking hydrea 500 this week. A lot of unknown information. Can I still work, will I live a normal life i am active had plans to retire and travel in the next 2 years just so afraid and mad.
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.
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.
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@cec2
FYI: I take one low-dose aspirin in the morning and one in the evening. Nobody told me either, about whether to take them together or not. But when I’m asked about that, they’re satisfied that that’s the way I’m doing it.
Best to you.
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3 Reactions@arti4
Thanks, very helpful!
Have a blessed day.
I think the NIH or NLM had a report on the shingrix and platelets, it's been a few years so I no longer have reference
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2 Reactions@cec2 Hi, if you don't mind, I'll add my information here. I am ET with JAK2 also—age 76, male. When my platelets hit 600, my hem/oncologist told me to take one or two baby aspirin 81 mg/day. I did some deep research on it from many different medical articles. Many doctors suggested their patients split the dose, with one aspirin in the AM and one with or after. The reason was that research showed that the risk of thrombotic cardiovascular events, such as heart attacks and strokes, peaks in the morning, particularly between 6 a.m. and noon.
So, taking one in the evening ensures you still have a high level until you take your morning baby aspirin. Made sense to me! So I take mine with breakfast or after breakfast, and with dinner or after dinner.
As far as "dreading" hydroxyurea, please don't have anticipatory anxiety about it. It's been used for 47 years, and many people have no or minor symptoms. I started it 8 months ago at 500 mg/day, and my symptoms are very minor, off and on, skin itching (not a big deal), and sometimes feeling a bit sweaty at night. But I do not sweat much at all—no soaking sheets or T-shirt—and it is again, not painful or very bothersome. I wear bamboo fiber tees and jockey shorts to "wick" away moisture. But as I said, it is a minor percentage of people who have side effects bad enough that they need to quit. The alternative 1-2 drugs have different and, in many cases, worse side effects.
If you want to keep all side effects and also your cancer as stable as possible, switch lifestyles if you have not read about the importance of low-inflammatory diets, daily exercise, weight control, taking anti-inflammatory supplements, stress control, and 7-8 hours of sleep nightly. The Mediterranean Diet and supplements like Omega-3 Fish oil caplets daily have improved my quality of life more than anything else. Those lifestyle changes also keep platelet count lower (high stress raises platelet counts) to a healthier level.
-
Like -
Helpful -
Hug
4 Reactions@1995victoria
Thank you for that info.
I just did a brief search and found several articles that related to Shingex causing too-low platelet counts in people who do not have ET. For us with ET, a reduced platelet count is probably not a bad thing. I'm now wondering if I can thank my first shingrex shot for my reduced count that otherwise would have probably gone up to the dreaded number 600k.
I'm thankful I can get my eye surgeries done before I have to go on HU, presuming I will at some point. I'm one of those people who are peculiar about doing more than one new thing to my body at a time! LOL
@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.
-
Like -
Helpful -
Hug
2 Reactions@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
-
Like -
Helpful -
Hug
2 Reactions@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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1 Reaction@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.
-
Like -
Helpful -
Hug
3 Reactions@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.
-
Like -
Helpful -
Hug
2 Reactions