Hay, you sound like me 3 years ago when I was diagnosed with PV. I eat healthy, I'm slender, do regular exercise and take whole lot of supplements and vitamins but after two and a half years, with a biweekly phlebotomy, baby aspirin and POSITIVE THINKING, my red blood count was 2057, safe range is 120-400. I was heavily fatigued, had frequent stomach upsets and painful circulation problems, so I broke down and started taking hydroxyurea every night. I have regained my energy and now after 8 months my blood count is a bit over 900. As soon as it hits 500 I plan to take the hydro pill only 4 nights a week. I hate it, call it the poison pill, (PP) but it has helped with no side effects that I can tell. I suggest you relent and not let your platelets get out of control. Robin in NY State but I grew up in Southern California. So, Howdy!
Hello Robin in NY but grew up in S. CA! So good to hear from you. I have soooo many of the symptoms, though major fatigue isn't one of them. I've always been a go-getter and a hit-the-floor-running kind of girl. Though I will say my longevity isn't like it used to be. Hopefully I will know more in the next few weeks. Looking forward to more conversations. Carol in New Mexico
I was having a lot of the standard symptoms- dizziness, fatigue, and symptoms associated with dehydration including extreme thirst and horrible cramps in my neck and shoulders. I finally saw an internist and he ordered a blood test either that day or the next and the day after that I got a phone call from a nurse navigator at the North Bay Cancer Center that something was off and I needed to go in that afternoon. When I went in they sent me to see Dr. Long, who's the head of the hematology/oncology dept. there and he showed me on the computer that I proved positive for PV
Hey thanks so much for your reply , I wasn't sure if anyone reads these. My hemo guy Dr. Long is super mellow; they have me do a consult with him and then CBC right afterward. I know my results that night online. He tends to only pay attention to my hemoglobin number. If it's 15 or higher im automatically scheduled for a phlebotomy the next afternoon. i bring in my laptop and watch a concert on YouTube , helps to distract me. I have a great relationship with all of the staff and even put together a custom thank you note for them. It really helps to have a good relationship with the staff. im also on baby aspirin plus Dr. Long has me drinking regular tea (herbal tea doesnt work) with my meals ; the tannins on black and green tea are supposed to help negate absorbing iron from the meal. Regular exercise is important too. I walk at a few local parks plus occasionally put in a few miles on a stationary bike at a gym. I tend to play tennis about once a week but right now that's on hold due to a wrist tendinitis that comes up once every few years. I live in Northern California and I live literally five minutes from the cancer center . im not doing hydrox or any other pills, only the baby aspirin and phlebotomy . Exercise, mediation, and positive thinking are all very important. I eat as healthy as I can. I naturally have a slimmer build and the good diet and exercise definitely help with that.
Hay, you sound like me 3 years ago when I was diagnosed with PV. I eat healthy, I'm slender, do regular exercise and take whole lot of supplements and vitamins but after two and a half years, with a biweekly phlebotomy, baby aspirin and POSITIVE THINKING, my red blood count was 2057, safe range is 120-400. I was heavily fatigued, had frequent stomach upsets and painful circulation problems, so I broke down and started taking hydroxyurea every night. I have regained my energy and now after 8 months my blood count is a bit over 900. As soon as it hits 500 I plan to take the hydro pill only 4 nights a week. I hate it, call it the poison pill, (PP) but it has helped with no side effects that I can tell. I suggest you relent and not let your platelets get out of control. Robin in NY State but I grew up in Southern California. So, Howdy!
Hey thanks so much for your reply , I wasn't sure if anyone reads these. My hemo guy Dr. Long is super mellow; they have me do a consult with him and then CBC right afterward. I know my results that night online. He tends to only pay attention to my hemoglobin number. If it's 15 or higher im automatically scheduled for a phlebotomy the next afternoon. i bring in my laptop and watch a concert on YouTube , helps to distract me. I have a great relationship with all of the staff and even put together a custom thank you note for them. It really helps to have a good relationship with the staff. im also on baby aspirin plus Dr. Long has me drinking regular tea (herbal tea doesnt work) with my meals ; the tannins on black and green tea are supposed to help negate absorbing iron from the meal. Regular exercise is important too. I walk at a few local parks plus occasionally put in a few miles on a stationary bike at a gym. I tend to play tennis about once a week but right now that's on hold due to a wrist tendinitis that comes up once every few years. I live in Northern California and I live literally five minutes from the cancer center . im not doing hydrox or any other pills, only the baby aspirin and phlebotomy . Exercise, mediation, and positive thinking are all very important. I eat as healthy as I can. I naturally have a slimmer build and the good diet and exercise definitely help with that.
If your platelets go over 600 they’ll want to put you on Hydroxyurea. They can still fluctuate with the meds but don’t go too high. Hopefully they’ll go down on their own. They can be affected by so many things, it’s hard to know 😉
I have been on hydroxy (500mg) since diagnosed and have really had no bad issues with it since I started. I think that this medication is used to control cell production while the aspirin is used to prevent clotting. I’m down to getting phlebotomy every 4 / 5 months compared to monthly when first started. Being very hydrated for your phlebotomy seems to help it go a lot quicker. My doctor is using my hemoglobin to manage both dosage and phlebotomy frequency and is using 16 as a trigger.
My Doctor uses the Hematocrit to determine when I need a phlebotomy. 45 is the number. Once over that, the next day phlebotomy. Hydroxyurea is to lower platelets and red cells. I’m still doing labs every two weeks until we get some sort of stability.
Hey thanks so much for your reply , I wasn't sure if anyone reads these. My hemo guy Dr. Long is super mellow; they have me do a consult with him and then CBC right afterward. I know my results that night online. He tends to only pay attention to my hemoglobin number. If it's 15 or higher im automatically scheduled for a phlebotomy the next afternoon. i bring in my laptop and watch a concert on YouTube , helps to distract me. I have a great relationship with all of the staff and even put together a custom thank you note for them. It really helps to have a good relationship with the staff. im also on baby aspirin plus Dr. Long has me drinking regular tea (herbal tea doesnt work) with my meals ; the tannins on black and green tea are supposed to help negate absorbing iron from the meal. Regular exercise is important too. I walk at a few local parks plus occasionally put in a few miles on a stationary bike at a gym. I tend to play tennis about once a week but right now that's on hold due to a wrist tendinitis that comes up once every few years. I live in Northern California and I live literally five minutes from the cancer center . im not doing hydrox or any other pills, only the baby aspirin and phlebotomy . Exercise, mediation, and positive thinking are all very important. I eat as healthy as I can. I naturally have a slimmer build and the good diet and exercise definitely help with that.
I have been on hydroxy (500mg) since diagnosed and have really had no bad issues with it since I started. I think that this medication is used to control cell production while the aspirin is used to prevent clotting. I’m down to getting phlebotomy every 4 / 5 months compared to monthly when first started. Being very hydrated for your phlebotomy seems to help it go a lot quicker. My doctor is using my hemoglobin to manage both dosage and phlebotomy frequency and is using 16 as a trigger.
wow that's great the hydrox is helping decrease your phlebotomy frequency- I'll discuss hydroxy with my doctor again. thanks so much for the positive feedback.
I was researching being on a clinical trial for a new oral medicine called Rusfertide, but I dont qualify. Didnt know Hydroxyurea is so popular
I think you read my comment wrong. I have the full support of all of my family without question or judgment. Others I have trouble with, since most people cant relate to something they know nothing about and have never experienced. Since my diagnosis I look at life from a whole new perspective, i.e., I am more accepting and empathetic of all various sorts of diseases, disorders and ailments. I went to college and spent most of my adult life in a region of Northern CA where people focus on the whole mind/body connection, encompassing mental, emotional , and spiritual growth and a huge focus on the healing arts, including healthy eating, massage, acupuncture, biofeedback, and other homeopathic modalities, and it rubbed off on me in a positive way
my hematologist and I discussed hydroxyurea but decided ideal way to go is only baby aspirin and phlebotomy, which currently is every 3-4 months, based on my hemoglobin number. They still run my other numbers, of course, but my hemo guy really only pays attention to the Hgb number- I determined that watching a mellow concert on YouTube during my phlebotomy is a good way to go so the night prior am sure to have my laptop charged and the wired headphones are always in my laptop case. A positive mental attitude is essential in all of this. Good diet, exercise, and supportive friends and family are important as well
I have been on hydroxy (500mg) since diagnosed and have really had no bad issues with it since I started. I think that this medication is used to control cell production while the aspirin is used to prevent clotting. I’m down to getting phlebotomy every 4 / 5 months compared to monthly when first started. Being very hydrated for your phlebotomy seems to help it go a lot quicker. My doctor is using my hemoglobin to manage both dosage and phlebotomy frequency and is using 16 as a trigger.
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Hello Robin in NY but grew up in S. CA! So good to hear from you. I have soooo many of the symptoms, though major fatigue isn't one of them. I've always been a go-getter and a hit-the-floor-running kind of girl. Though I will say my longevity isn't like it used to be. Hopefully I will know more in the next few weeks. Looking forward to more conversations. Carol in New Mexico
I was having a lot of the standard symptoms- dizziness, fatigue, and symptoms associated with dehydration including extreme thirst and horrible cramps in my neck and shoulders. I finally saw an internist and he ordered a blood test either that day or the next and the day after that I got a phone call from a nurse navigator at the North Bay Cancer Center that something was off and I needed to go in that afternoon. When I went in they sent me to see Dr. Long, who's the head of the hematology/oncology dept. there and he showed me on the computer that I proved positive for PV
Hay, you sound like me 3 years ago when I was diagnosed with PV. I eat healthy, I'm slender, do regular exercise and take whole lot of supplements and vitamins but after two and a half years, with a biweekly phlebotomy, baby aspirin and POSITIVE THINKING, my red blood count was 2057, safe range is 120-400. I was heavily fatigued, had frequent stomach upsets and painful circulation problems, so I broke down and started taking hydroxyurea every night. I have regained my energy and now after 8 months my blood count is a bit over 900. As soon as it hits 500 I plan to take the hydro pill only 4 nights a week. I hate it, call it the poison pill, (PP) but it has helped with no side effects that I can tell. I suggest you relent and not let your platelets get out of control. Robin in NY State but I grew up in Southern California. So, Howdy!
What made you get that diagnosis. Was that blood test routine or did your doctor schedule a particular test based on what concern.
If your platelets go over 600 they’ll want to put you on Hydroxyurea. They can still fluctuate with the meds but don’t go too high. Hopefully they’ll go down on their own. They can be affected by so many things, it’s hard to know 😉
My Doctor uses the Hematocrit to determine when I need a phlebotomy. 45 is the number. Once over that, the next day phlebotomy. Hydroxyurea is to lower platelets and red cells. I’m still doing labs every two weeks until we get some sort of stability.
Same for me since 2019. Baby aspirin and phlebotomy.
Just went to oncologist last week. Numbers are ok, platelets high.
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wow that's great the hydrox is helping decrease your phlebotomy frequency- I'll discuss hydroxy with my doctor again. thanks so much for the positive feedback.
I was researching being on a clinical trial for a new oral medicine called Rusfertide, but I dont qualify. Didnt know Hydroxyurea is so popular
I think you read my comment wrong. I have the full support of all of my family without question or judgment. Others I have trouble with, since most people cant relate to something they know nothing about and have never experienced. Since my diagnosis I look at life from a whole new perspective, i.e., I am more accepting and empathetic of all various sorts of diseases, disorders and ailments. I went to college and spent most of my adult life in a region of Northern CA where people focus on the whole mind/body connection, encompassing mental, emotional , and spiritual growth and a huge focus on the healing arts, including healthy eating, massage, acupuncture, biofeedback, and other homeopathic modalities, and it rubbed off on me in a positive way
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1 ReactionI have been on hydroxy (500mg) since diagnosed and have really had no bad issues with it since I started. I think that this medication is used to control cell production while the aspirin is used to prevent clotting. I’m down to getting phlebotomy every 4 / 5 months compared to monthly when first started. Being very hydrated for your phlebotomy seems to help it go a lot quicker. My doctor is using my hemoglobin to manage both dosage and phlebotomy frequency and is using 16 as a trigger.
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