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!
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’m new to PV also. Recently diagnosed in January this year. Are you getting phlebotomies as well? You had t mentioned that. I have t reached any sort of normalcy yet. Hoping the Hydroxyurea stables it out. I’m taking 5 days on 2 off. My platelets stemmed to drop nicely but suddenly jumped back up so I was told to give it time. I had just recovered from a nasty COVID experience so I’m hoping that had something to do with it. Glad you are well!
Very similar story here. About one and a half years since diagnosis. Started with daily hydrox. and phlebotomies every two weeks. Now down to phlebitomies every 3 or 4 months and hydrox 4x week. My doc uses that dosage based on hemoglobin and platelet levels. So far, no problems or side effects.
Last week my hermecrit went from .45 to .40 and it surprised me and my red blood count went below normal.I am still on the same amount of hydroxyurea 1000 week days and 500 weekends .It was at .42 for 2 months.Anyone know if it is normal to jump like that. Could it be because I walked 4 kms the day before the blood test.Thanks to all of you for this site and all the members.
Hi @anitarose, Welcome to Connect! Thank you for sharing your experience with PV. We often only hear the negative stories so it’s great that you’re doing pretty well on the Hydrea. It’s keeping your numbers even and that’s the goal.
Another positive is only needing bloodwork every 3 months. I felt liberated when my leash was lengthen to 3 month intervals. That meant my oncologist was seeing a predictable pattern and not anticipating anything out of the ordinary. So that’s a good indication that your meds are working.
Hi Lori,
I take one 500 mg Hydrea 6 days a week. Started with every day, but when numbers dropped, Dr told me to skip one day a week. That was about 6 months ago. Numbers still holding. 😊
Thanks Kit. Appreciate the kind words. I'm 68 and I think I may have had this a while. Looking back I've had syptoms for a while. My former doctor last fall did a 'complete' blood work up on me, but failed to do a HCT. I thankfully have switched physicians and am now with a University medical system, which I am so glad for. Will keep you posted - and thanks. Carol
I get annual labs with my physical so we know it's new for me. PLUS I began
menopause late when 54 almost 55 and many symptoms are exactly the same!
Headaches, tingling, stomach issues, flush face, loss of trend of thought
(AKA Brain Fog) So I honestly don't know which is causing what. I had the
complete ultrasound and all my organs and spleen are of normal size so they
say that means I am at the beginning of the disease. I do feel like I am
younger than most people on here, so I am very grateful I found out at the
very beginning. I am sure they will order that for you once you get final
diagnosis. I had the JAK2 Positive to confirm. No need to do bone biopsy if
all labs confirm. Good Luck!
Hey Carol! I was diagnosed in December 2022. So I’m fairly a newbie as well. I was completely floored with diagnosis! My spouse is the type just to brush it off and say oh you will be okay. I struggle with fatigue, joint pain, nose bleeds, bleeding gums, headaches and terrible discoloration and spots on feet/legs. But the good news is that the phlebotomies help me! I can feel a big difference. They were hoping to try every 3 months, after the first 3 months helped get numbers leveled. But I went primary dr last week and my hemacrit has came back up to 54. I’m 53 year old male. I’ve been having symptoms for several years. Terrible kidney stones. I’m just glad to find out what’s going on. Hang in there! It’s not a death sentence like you will read online! Finding good dr and taking care of yourself, you can live fairly normal. The Myth in TN
Thanks 'Myth' . It's scary for me at this point, and the lack of support is quite hard for me. I'm lucky that my medical facilities are quite close for me and I plan to just plug along one day at a time, and hope that I at least don't get covid again (and I've been careful about that to begin with). It so helps to connect with others. 🙂 Carol
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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
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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!
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
Excellent! I'm hoping for the same results...Thank you.
Very similar story here. About one and a half years since diagnosis. Started with daily hydrox. and phlebotomies every two weeks. Now down to phlebitomies every 3 or 4 months and hydrox 4x week. My doc uses that dosage based on hemoglobin and platelet levels. So far, no problems or side effects.
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Helpful -
Hug
2 ReactionsLast week my hermecrit went from .45 to .40 and it surprised me and my red blood count went below normal.I am still on the same amount of hydroxyurea 1000 week days and 500 weekends .It was at .42 for 2 months.Anyone know if it is normal to jump like that. Could it be because I walked 4 kms the day before the blood test.Thanks to all of you for this site and all the members.
Hi Lori,
I take one 500 mg Hydrea 6 days a week. Started with every day, but when numbers dropped, Dr told me to skip one day a week. That was about 6 months ago. Numbers still holding. 😊
-
Like -
Helpful -
Hug
1 ReactionI get annual labs with my physical so we know it's new for me. PLUS I began
menopause late when 54 almost 55 and many symptoms are exactly the same!
Headaches, tingling, stomach issues, flush face, loss of trend of thought
(AKA Brain Fog) So I honestly don't know which is causing what. I had the
complete ultrasound and all my organs and spleen are of normal size so they
say that means I am at the beginning of the disease. I do feel like I am
younger than most people on here, so I am very grateful I found out at the
very beginning. I am sure they will order that for you once you get final
diagnosis. I had the JAK2 Positive to confirm. No need to do bone biopsy if
all labs confirm. Good Luck!
Thanks 'Myth' . It's scary for me at this point, and the lack of support is quite hard for me. I'm lucky that my medical facilities are quite close for me and I plan to just plug along one day at a time, and hope that I at least don't get covid again (and I've been careful about that to begin with). It so helps to connect with others. 🙂 Carol