Mine is 45. Although now that my iron has tanked from phlebotomies he let it go to 49 and I felt like complete crap! Waiting on next labs. I was doing well, numbers wise for almost two years and then my iron was basically gone so they doubled my hydroxyurea and we will see my numbers in a few weeks. Normally that will lower platelets drastically but doesn’t help much with my red cells. We shall see. It’s a balancing act but I know that more meds make me feel horrible…
Hi I am new to this platform and I was diagnosed back in 2019, I think. Anyhow I have never gone on medication only baby aspirin. But my oncologist will not allow my HCT to go above 44. Even if it is 45 They will do the phlebotomy therapy. Ugh cause now for last year they give me an IV along with it so procedure is longer (cause I had anxiety once and passed out during so now they do an IV both. Ugh
I love my oncologist but I feel fine if my HCT is a touch high. It is like once a month that I Am constantly being drained
My other levels normal HGB. Platelets. My RBC is slightly high
I have never had a blood clot and my energy level has improved as I am very exercise conscious and love to be on the go
After reading other postings. I am wondering if I should change oncologist since they constantly do phlebotomy when it rises above 44.
I am 75. And tired of dr appointments when I am actually starting to feel much better.
Should I change oncologist since??
I’ve been having monthly blood tests (CBC) since my diagnosis of PV in 2021. My doctor was using Hematocrit to determine when I needed a phlebotomy. He changed that to using Hemoglobin as a determinant about a year and a half ago. He also keeps an eye on my platelet count but has used dosage adjustments (HU) to manage that.
I’ve been feeling really good and have not had a phlebotomy in well over a year now.
Wow. A year. I have PCV but I only take a baby aspirin. I have refused medication so I am constantly having to have phlebotomy. My oncologist will do when it is above 44. Even if it is only 44.5. It is annoying. I get blood work done every 2 weeks and usually one a month it goes over 44 I have never had a blood clot. My platelets. HGB and other levels normal or 1 or 2 number varies. But seems so draining to constantly poke me
Any comments appreciate
Hi I am new to this platform and I was diagnosed back in 2019, I think. Anyhow I have never gone on medication only baby aspirin. But my oncologist will not allow my HCT to go above 44. Even if it is 45 They will do the phlebotomy therapy. Ugh cause now for last year they give me an IV along with it so procedure is longer (cause I had anxiety once and passed out during so now they do an IV both. Ugh
I love my oncologist but I feel fine if my HCT is a touch high. It is like once a month that I Am constantly being drained
My other levels normal HGB. Platelets. My RBC is slightly high
I have never had a blood clot and my energy level has improved as I am very exercise conscious and love to be on the go
After reading other postings. I am wondering if I should change oncologist since they constantly do phlebotomy when it rises above 44.
I am 75. And tired of dr appointments when I am actually starting to feel much better.
Should I change oncologist since??
Both of the oncologists I had would let it go a few points over 45 to avoid having back to back phlebotomies. The research shows that most symptoms come with PV patients actually comes from the iron deficiency from the excessive phlebotomies. We can not take iron. It increases the red cells and causes the numbers to go even higher so they try to find a balance. I would def go to someone else. Medications on a low dose can make your numbers stay lower longer and that should be an option, depending on your other health conditions. Tell them to check your iron levels too. My first doctor did not, only upon diagnosis and then I had issues. Good luck!
I was diagnosed with secondary PV back in March and 50 HCT is current threshold for phlebotomy. Based on my research, I am going to push for 45 or lower HCT target during my upcoming hematologist appmt. Because
I am dealing with radiation-induced right carotid stenosis (total blockage), I am very concerned with clotting
risk on left side. Any comments welcome.
Sounds like you are dealing with a lot
I was diagnosed with PV
after having a stroke and two dvts while recovering in hospital. Immediately put on Eliquis and as soon as I was discharged my dr tested my blood and diagnosed me with PV I initially had two phlebotomies, then was prescribed hydroxyurea and have never had to have another phlebotomy (2018)
Dr wants my hct under 45
Never gone above 43
Oil/ hemat sees me and does bloodwork every two to three months
Wow. A year. I have PCV but I only take a baby aspirin. I have refused medication so I am constantly having to have phlebotomy. My oncologist will do when it is above 44. Even if it is only 44.5. It is annoying. I get blood work done every 2 weeks and usually one a month it goes over 44 I have never had a blood clot. My platelets. HGB and other levels normal or 1 or 2 number varies. But seems so draining to constantly poke me
Any comments appreciate
Regarding the concerns about clotting: I am also on a blood thinner as I had AFIB for some time. Even though it has been resolved, my doctor wants me to stay on the medication in the event that it returns without my knowing about it. I’m guessing that is why my Oncologist is OK with the higher readings.
My Hematologist wants my HCT below 45, so I have started phlebotomy every month. Not fun. Makes me tired and feel depleted. He is worried about stroke and Heart Attack. If I have to keep doing this to keep HCT down, then I will switch to Besremi injections. Not going there yet due to cost, but will consider it soon! I have ET, but by HCT is gradually going up to 48 at times. White count is above 10 but below 11, which is another milestone. Platelets have been fine on Hydroxyurea for years. staying below 500k. Hope this helps!
Sounds like you are dealing with a lot
I was diagnosed with PV
after having a stroke and two dvts while recovering in hospital. Immediately put on Eliquis and as soon as I was discharged my dr tested my blood and diagnosed me with PV I initially had two phlebotomies, then was prescribed hydroxyurea and have never had to have another phlebotomy (2018)
Dr wants my hct under 45
Never gone above 43
Oil/ hemat sees me and does bloodwork every two to three months
Thank you for your reply. Cannot take blood thineer and other meds, hence the
willingness for regular phlebotomy. Had kidney transplant in 2008, so my regimen of immunosuppressants restrict other medications. Hoping dr agrees to adjust phlebotomy routine to achieve HCT level in mid-40s. Continued good health.
Hi sounds like you have a lot on your plate. I have PCV
Is yours with JAK2 mutation
I can't recall if it is secondary.
Anyhow I have been dealing with it a few years only doing phlebotomy which is draining like once a month.
I have refused to go on any medication and only take baby aspirin. But I try to eat all organic. And try to avoid sugar except natural fruits
But my oncologist will not allow me to have anything over 44. (I am constantly having to have phlebotomies which cause low iron ).
Sounds like your oncologist allows your HCT to be higher and is ok with it
My energy level has improved as I have focused on God as my top priority and he has truly blessed me
My health pinnacle that I try
1. Spiritual
2 water
3 sleep
4 diet
5 exercise
Have you been able to sleep and hydrate etc
I hope your journey will improve since you were recently diagnosed
Thank you for your response. Since JAK2 test was negative, I chose to go with phlebotomy. Like you, I refuse new meds whenever possible. Due to kidney transplant in 2008, my transplant team contols my med/treatments. Cannot take any risk with negative interaction with my immunosuppressants. The Lord has blessed me with good health over 18 yrs post-transplant. I view this secondary PV diagnosis ust a 'bump in the road' and believe phlebotomy is the most prudent approach for me. May God's blessings immerse you with continued good health.
My average HCT readings are quite a bit higher than your target. But I’m on a blood thinner (Eliquis) so I guess that’s why my doctor seems to be OK with it remaining at that level.
Thank you for your response. Cannot take blood thinner, so I am fine with phlebotomy regimen whatever that turns out to be. Since I am kidney transplant patient, my transplant team conrols the meds to mke sure no risk of negative interaction with my immunosuppressants. All the best.
Thank you for your reply. Cannot take blood thineer and other meds, hence the
willingness for regular phlebotomy. Had kidney transplant in 2008, so my regimen of immunosuppressants restrict other medications. Hoping dr agrees to adjust phlebotomy routine to achieve HCT level in mid-40s. Continued good health.
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Hi I am new to this platform and I was diagnosed back in 2019, I think. Anyhow I have never gone on medication only baby aspirin. But my oncologist will not allow my HCT to go above 44. Even if it is 45 They will do the phlebotomy therapy. Ugh cause now for last year they give me an IV along with it so procedure is longer (cause I had anxiety once and passed out during so now they do an IV both. Ugh
I love my oncologist but I feel fine if my HCT is a touch high. It is like once a month that I Am constantly being drained
My other levels normal HGB. Platelets. My RBC is slightly high
I have never had a blood clot and my energy level has improved as I am very exercise conscious and love to be on the go
After reading other postings. I am wondering if I should change oncologist since they constantly do phlebotomy when it rises above 44.
I am 75. And tired of dr appointments when I am actually starting to feel much better.
Should I change oncologist since??
Wow. A year. I have PCV but I only take a baby aspirin. I have refused medication so I am constantly having to have phlebotomy. My oncologist will do when it is above 44. Even if it is only 44.5. It is annoying. I get blood work done every 2 weeks and usually one a month it goes over 44 I have never had a blood clot. My platelets. HGB and other levels normal or 1 or 2 number varies. But seems so draining to constantly poke me
Any comments appreciate
Both of the oncologists I had would let it go a few points over 45 to avoid having back to back phlebotomies. The research shows that most symptoms come with PV patients actually comes from the iron deficiency from the excessive phlebotomies. We can not take iron. It increases the red cells and causes the numbers to go even higher so they try to find a balance. I would def go to someone else. Medications on a low dose can make your numbers stay lower longer and that should be an option, depending on your other health conditions. Tell them to check your iron levels too. My first doctor did not, only upon diagnosis and then I had issues. Good luck!
Sounds like you are dealing with a lot
I was diagnosed with PV
after having a stroke and two dvts while recovering in hospital. Immediately put on Eliquis and as soon as I was discharged my dr tested my blood and diagnosed me with PV I initially had two phlebotomies, then was prescribed hydroxyurea and have never had to have another phlebotomy (2018)
Dr wants my hct under 45
Never gone above 43
Oil/ hemat sees me and does bloodwork every two to three months
Regarding the concerns about clotting: I am also on a blood thinner as I had AFIB for some time. Even though it has been resolved, my doctor wants me to stay on the medication in the event that it returns without my knowing about it. I’m guessing that is why my Oncologist is OK with the higher readings.
My Hematologist wants my HCT below 45, so I have started phlebotomy every month. Not fun. Makes me tired and feel depleted. He is worried about stroke and Heart Attack. If I have to keep doing this to keep HCT down, then I will switch to Besremi injections. Not going there yet due to cost, but will consider it soon! I have ET, but by HCT is gradually going up to 48 at times. White count is above 10 but below 11, which is another milestone. Platelets have been fine on Hydroxyurea for years. staying below 500k. Hope this helps!
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1 ReactionThank you for your reply. Cannot take blood thineer and other meds, hence the
willingness for regular phlebotomy. Had kidney transplant in 2008, so my regimen of immunosuppressants restrict other medications. Hoping dr agrees to adjust phlebotomy routine to achieve HCT level in mid-40s. Continued good health.
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Hug
1 ReactionThank you for your response. Since JAK2 test was negative, I chose to go with phlebotomy. Like you, I refuse new meds whenever possible. Due to kidney transplant in 2008, my transplant team contols my med/treatments. Cannot take any risk with negative interaction with my immunosuppressants. The Lord has blessed me with good health over 18 yrs post-transplant. I view this secondary PV diagnosis ust a 'bump in the road' and believe phlebotomy is the most prudent approach for me. May God's blessings immerse you with continued good health.
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Like -
Helpful -
Hug
1 ReactionThank you for your response. Cannot take blood thinner, so I am fine with phlebotomy regimen whatever that turns out to be. Since I am kidney transplant patient, my transplant team conrols the meds to mke sure no risk of negative interaction with my immunosuppressants. All the best.
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1 ReactionWishing you the very best
with your plan with your dr
Sorry you’ve had to deal with so much