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.
I had symptoms for six months and found out through a blood test that an internist ran ; very next day I received a call from a nurse at the cancer center- two hours later was sitting in front of my hematologist telling me I have PV. Began treatment shortly afterward. Sorry you dont have more support from your husband. im a 59 yr old white male, no wife or gf and no kids but both of my parents are alive and have one sister; I get support through all of them fortunately . I also have a few supportive friends. This is my first support group and will be doing my first zoom meeting of blood cancers support group here in the Bay Area this Thursday evening.
I’m reading so many have PV yet it’s considered rare blood cancer. Like you, I never have had health issues or been on medication. I am 69 white female. Was told I have PV three weeks ago. Having weekly phlebotomy and on Hydroxyurea 1000mg daily. My hematocrit number was higher than any my doctor has seen. 69.5 I feel the same healthy person I’ve always been. No symptoms here. Yet my life is now changing because I’m told to take medicine which I use gloves to take!! So many tests to undergo now. My EKG was fine so I’m scheduled next for a full body Cat Scan. Pray I don’t have anything wrong internally. I’ll pray for you. Hugs
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
Sounds like we are on the same journey. I'm in the beginning of all this, haven't done scans or any of that yet. I know it's coming. Wish I had more support from the husband. Sigh. I wait to hear from you and hope all will continue to go well. Carol
I had symptoms for six months and found out through a blood test that an internist ran ; very next day I received a call from a nurse at the cancer center- two hours later was sitting in front of my hematologist telling me I have PV. Began treatment shortly afterward. Sorry you dont have more support from your husband. im a 59 yr old white male, no wife or gf and no kids but both of my parents are alive and have one sister; I get support through all of them fortunately . I also have a few supportive friends. This is my first support group and will be doing my first zoom meeting of blood cancers support group here in the Bay Area this Thursday evening.
I’m reading so many have PV yet it’s considered rare blood cancer. Like you, I never have had health issues or been on medication. I am 69 white female. Was told I have PV three weeks ago. Having weekly phlebotomy and on Hydroxyurea 1000mg daily. My hematocrit number was higher than any my doctor has seen. 69.5 I feel the same healthy person I’ve always been. No symptoms here. Yet my life is now changing because I’m told to take medicine which I use gloves to take!! So many tests to undergo now. My EKG was fine so I’m scheduled next for a full body Cat Scan. Pray I don’t have anything wrong internally. I’ll pray for you. Hugs
Sounds like we are on the same journey. I'm in the beginning of all this, haven't done scans or any of that yet. I know it's coming. Wish I had more support from the husband. Sigh. I wait to hear from you and hope all will continue to go well. Carol
Hi Carol! Yes, sometimes you feel light headed and get a slight blurred vision that comes out of no where but passes pretty quickly. My biggest issue currently is the tingling in my hands/ feet and arms/legs(not as often) I’m taking the baby aspirin and Hydroxyurea. After being diagnosed and put on the meds I had four weekly phlebotomies and everything was great so he took me off meds. Next phlebotomy was about six weeks later. Labs every two weeks, then showed platelets back just over 600 so back on the meds for a month now. I really don’t want to take them and read the tingling can be the PV and the meds can cause it also BUT my body will probably adjust to it in time. I hope so! I’m a 56 yr old female and have never had any health issues and didn’t take any daily meds until this. My husband cried and is so scared for me but I feel like I just need to stay on it and make sure I do my labs. It took a while to process… Also, many things I read on line weren’t true when I asked the oncologist, so try not to obsess with reading. KIT
I’m reading so many have PV yet it’s considered rare blood cancer. Like you, I never have had health issues or been on medication. I am 69 white female. Was told I have PV three weeks ago. Having weekly phlebotomy and on Hydroxyurea 1000mg daily. My hematocrit number was higher than any my doctor has seen. 69.5 I feel the same healthy person I’ve always been. No symptoms here. Yet my life is now changing because I’m told to take medicine which I use gloves to take!! So many tests to undergo now. My EKG was fine so I’m scheduled next for a full body Cat Scan. Pray I don’t have anything wrong internally. I’ll pray for you. Hugs
Hello, I started off with the exact same treatment. I’m curious as to how your platelets are doing? My doctor wants them below 600. After my four phlebotomies and put on baby aspirin AND Hydroxyurea, mine went down from 777(when diagnosed) to 265. I saw them go down about 100 each phlebotomy although those are more for lowering hematocrit. Was taken off meds and then within six weeks platelets slowly creeped back up to 600on the seventh week so back on hydroxyurea. I then had the next phlebotomy. Can’t seem to wonder if the phlebotomies alone more frequently will do the trick? I was told it’s early and it takes a while to get some sort of normalcy. From what you wrote, you are doing great!
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 was diagnosed with PV in February 2021. My hematologist goes by my hemoglobin number, which he wants to maintain at under 15.0. I started off at 20.0 and had to have four phlebotomies in four weeks, then to one per month. Now im at one every 3-4 months. I also take one 81 mg aspirin tablet per day . My hematologist also wants me to drink black or green tea with my meals, as he showed me it helps to regulate my iron absorption from the meal, which he's trying to keep as low as possible. Im a 4.0-level tennis player so my energy level is extremely important to me; I also walk on a regular basis. So far so good, plus im planning to do my first zoom meeting in a blood cancers support group this coming Thursday. Im a 59 year old male, no smoking, very light drinker and do my very best to keep my emotions in check. Fortunately my family is all very supportive. I am open to any feedback since this is my first time on any type of online forum for Polycythemia Vera, or any other blood cancer for that matter
Hello, I started off with the exact same treatment. I’m curious as to how your platelets are doing? My doctor wants them below 600. After my four phlebotomies and put on baby aspirin AND Hydroxyurea, mine went down from 777(when diagnosed) to 265. I saw them go down about 100 each phlebotomy although those are more for lowering hematocrit. Was taken off meds and then within six weeks platelets slowly creeped back up to 600on the seventh week so back on hydroxyurea. I then had the next phlebotomy. Can’t seem to wonder if the phlebotomies alone more frequently will do the trick? I was told it’s early and it takes a while to get some sort of normalcy. From what you wrote, you are doing great!
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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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1 ReactionYeah, it's hard going through without support from someone who should be bendin backwards at this time. I can connect with your feelings. Carol
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1 Reactionmy 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
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Helpful -
Hug
3 ReactionsI had symptoms for six months and found out through a blood test that an internist ran ; very next day I received a call from a nurse at the cancer center- two hours later was sitting in front of my hematologist telling me I have PV. Began treatment shortly afterward. Sorry you dont have more support from your husband. im a 59 yr old white male, no wife or gf and no kids but both of my parents are alive and have one sister; I get support through all of them fortunately . I also have a few supportive friends. This is my first support group and will be doing my first zoom meeting of blood cancers support group here in the Bay Area this Thursday evening.
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3 ReactionsSounds like we are on the same journey. I'm in the beginning of all this, haven't done scans or any of that yet. I know it's coming. Wish I had more support from the husband. Sigh. I wait to hear from you and hope all will continue to go well. Carol
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Helpful -
Hug
1 ReactionI’m reading so many have PV yet it’s considered rare blood cancer. Like you, I never have had health issues or been on medication. I am 69 white female. Was told I have PV three weeks ago. Having weekly phlebotomy and on Hydroxyurea 1000mg daily. My hematocrit number was higher than any my doctor has seen. 69.5 I feel the same healthy person I’ve always been. No symptoms here. Yet my life is now changing because I’m told to take medicine which I use gloves to take!! So many tests to undergo now. My EKG was fine so I’m scheduled next for a full body Cat Scan. Pray I don’t have anything wrong internally. I’ll pray for you. Hugs
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Helpful -
Hug
3 ReactionsHey 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.
-
Like -
Helpful -
Hug
3 ReactionsHello, I started off with the exact same treatment. I’m curious as to how your platelets are doing? My doctor wants them below 600. After my four phlebotomies and put on baby aspirin AND Hydroxyurea, mine went down from 777(when diagnosed) to 265. I saw them go down about 100 each phlebotomy although those are more for lowering hematocrit. Was taken off meds and then within six weeks platelets slowly creeped back up to 600on the seventh week so back on hydroxyurea. I then had the next phlebotomy. Can’t seem to wonder if the phlebotomies alone more frequently will do the trick? I was told it’s early and it takes a while to get some sort of normalcy. From what you wrote, you are doing great!