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.
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 😉
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.
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!
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!
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
Hi Darryl. My HCT (hematocrit - may have spelled that wrong) was waaaay out of whack and high. I had blood testing last fall and they failed to do a complete blood count (CBC). That's the first indication that showed it and will for most people. I started with a new physician and she ran the full gammit of blood tests on me to get a baseline on my health when I started with her a couple months go. Bam. There it was. Associate yourself with a good medical system. My preious doctor ran tests on me but NOT a CBC. No idea how long I have had this.
In my case the diagnosis came about as a result of my regular doctor being out on my appointment date and the one filling in though I looked “ruddy “. He ordered a CBC test on me and the hematocrit reading was in mid 60’s. That led to a referral and diagnosis.
My dianosis story was somewhat similar. What I haven't seen (which may tell me there isn't) - is if there are any dietary limitations with this particular Polycythemia diagnosis. Any limits on any types of foods, beverages, additional vitamin supplements - etc? Any dietary items that may help with this? All comments appreciated. Carol in New Mexico
My dianosis story was somewhat similar. What I haven't seen (which may tell me there isn't) - is if there are any dietary limitations with this particular Polycythemia diagnosis. Any limits on any types of foods, beverages, additional vitamin supplements - etc? Any dietary items that may help with this? All comments appreciated. Carol in New Mexico
Dépendant on your meds - example Jakafi : NO grapefruit in any kind of form. And I’ve had to drastically limit wine (I only ever drunk 1-1.5 glass/day) as it aggravates my weakness for UTIs…
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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.
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 😉
What made you get that diagnosis. Was that blood test routine or did your doctor schedule a particular test based on what concern.
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!
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
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
Hi Darryl. My HCT (hematocrit - may have spelled that wrong) was waaaay out of whack and high. I had blood testing last fall and they failed to do a complete blood count (CBC). That's the first indication that showed it and will for most people. I started with a new physician and she ran the full gammit of blood tests on me to get a baseline on my health when I started with her a couple months go. Bam. There it was. Associate yourself with a good medical system. My preious doctor ran tests on me but NOT a CBC. No idea how long I have had this.
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2 ReactionsIn my case the diagnosis came about as a result of my regular doctor being out on my appointment date and the one filling in though I looked “ruddy “. He ordered a CBC test on me and the hematocrit reading was in mid 60’s. That led to a referral and diagnosis.
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Like -
Helpful -
Hug
1 ReactionMy dianosis story was somewhat similar. What I haven't seen (which may tell me there isn't) - is if there are any dietary limitations with this particular Polycythemia diagnosis. Any limits on any types of foods, beverages, additional vitamin supplements - etc? Any dietary items that may help with this? All comments appreciated. Carol in New Mexico
Dépendant on your meds - example Jakafi : NO grapefruit in any kind of form. And I’ve had to drastically limit wine (I only ever drunk 1-1.5 glass/day) as it aggravates my weakness for UTIs…