Has anyone had another therapeutic phlebotomy one week later?

Posted by wendy517 @wendy517, May 4, 2023

I've got PV, my HBG was 17.8 two days ago and I'm feeling lousy after my first TP and want another in a week. My oncologist said no, 2 weeks. I'm female, small build and just started this journey. My head hurts, my BP is spiking to diastolic numbers up to 110 after one flight of stairs. It does come down after rest. I've never felt this much fatigue.
Thank you for any feedback!

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If the reason for phlebotomy is to reduce your hematocrit levels because it is elevated, then that determines how often you go. I had to get phlebotomy treatments three weeks in a row to reduce my Hematocrit levels. I was at 65% and the standard levels are around 42-53%, for that reason I had to go weekly until I was back to standard levels.

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@new2this

If the reason for phlebotomy is to reduce your hematocrit levels because it is elevated, then that determines how often you go. I had to get phlebotomy treatments three weeks in a row to reduce my Hematocrit levels. I was at 65% and the standard levels are around 42-53%, for that reason I had to go weekly until I was back to standard levels.

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All this is all new to me, its was my hemoglobin that was very high, the oncologist didn't say anything in regards to my hematocrit levels. Thank you very much, I'll look up that number and ask more questions.

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I have had to go back when my platelets were so high that they couldn't get blood to flow -- the blood would clot in the needle almost instantly. I had one session where they went in five different locations trying to get it to flow but the clotting happened so quickly they couldn't get anything out of me. They asked me to drink enormous amounts of liquids and come back in a few days to try again. That time they opted to just draw the blood out with syringes instead.

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@chadknudson

I have had to go back when my platelets were so high that they couldn't get blood to flow -- the blood would clot in the needle almost instantly. I had one session where they went in five different locations trying to get it to flow but the clotting happened so quickly they couldn't get anything out of me. They asked me to drink enormous amounts of liquids and come back in a few days to try again. That time they opted to just draw the blood out with syringes instead.

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Wow, I'm so sorry. My first was a bit sludge like and very dark but got a pint out in about 10 mins. I've always been a quick bleed, I used to donate a lot. Which apparently was keeping the PV undiagnosed. I just received my weekly script from my GP. My current hem/onc is fired. Onto a very good doc at Sloan.
Be well and happy Cinco de Mayo 😉

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@wendy517

All this is all new to me, its was my hemoglobin that was very high, the oncologist didn't say anything in regards to my hematocrit levels. Thank you very much, I'll look up that number and ask more questions.

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When I was first diagnosed I had to have several weekly phlebotomies to get my hematocrit under control. The magic number for me is 42. If I go higher I schedule a phlebotomy. The HU is keeping my platelets stable. I’m now on HU every other day with monthly lab draws. We’re hoping I’ll only need phlebotomies every few months. It takes a while to,get adjusted.

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@new2this

If the reason for phlebotomy is to reduce your hematocrit levels because it is elevated, then that determines how often you go. I had to get phlebotomy treatments three weeks in a row to reduce my Hematocrit levels. I was at 65% and the standard levels are around 42-53%, for that reason I had to go weekly until I was back to standard levels.

Jump to this post

I had the same experience as new2this when I was first diagnosed. Every two weeks, I think for a couple of months. Then we switched to monthly blood test monitoring with a HCT trigger of 16 to determine when to get a phlebotomy. I’m taking hydroxyurea (4x week) and I’m now just needing a phlebotomy every 5 or 6 months.

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@beebo

I had the same experience as new2this when I was first diagnosed. Every two weeks, I think for a couple of months. Then we switched to monthly blood test monitoring with a HCT trigger of 16 to determine when to get a phlebotomy. I’m taking hydroxyurea (4x week) and I’m now just needing a phlebotomy every 5 or 6 months.

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Sorry - On this reply I meant to say hemoglobin of 16 for monitoring not HCT.

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@holbrop

When I was first diagnosed I had to have several weekly phlebotomies to get my hematocrit under control. The magic number for me is 42. If I go higher I schedule a phlebotomy. The HU is keeping my platelets stable. I’m now on HU every other day with monthly lab draws. We’re hoping I’ll only need phlebotomies every few months. It takes a while to,get adjusted.

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Same here! Weekly phlebotomies fir 5 weeks and now trying to get the HU to where my platelets stabilize. They were at 777 after 5 phlebotomies and HU they dropped in the 200’s. Off HU and no phlebotomy for 7 weeks, platelets back up to 600 now taking every other day and they’re 360 which is acceptable. Hoping they don’t jump back up. I was diagnosed in January. My doctor says Hematocrit needs to be 45 or under. I’m at 42.9 so probably next lab draw in 4 weeks I’ll hit that.

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Hi there, I was diagnosed with PV in march, Hg 198 and Hct 60%. Had three phlebotomies every other day for a week, Hg went down to 153, Hct 48%. One month later Hg 165, Hct 51%, so one another phlebotomy and Hg was 153,Hct 48%. A was regularly monitoring serum iron levels and after these four interventions it was depleted below normal range and this slowed down the process of erythrocytes production. At the beginning of July I had another phlebotomy because Hct was up to 0,49, Hg 145. Next week I will make another blood test to see the situation.

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