too many phlebotomies?

[Moonflowers_]

How many phlebotomies are too many? I just had my 9th phlebotomy this year, with possibly one more next month. The frequency has increased every year over the past three years since I was diagnosed with Polycythemia Vera. Thank you.

[hunter5582]

There would be a couple of ways too many phlebotomies could occur from my experience. One way would be if you had so many phlebotomies that you end up anemic, overshooting the mark. This happened to me when my HCT - 32%. Another way that you could experience too many has to do with the long-term effect of phlebotomy-induced iron deficiency. While iron deficiency without anemia is the gol of phlebotomies, the iron deficiency can have adverse effects even when you are not anemic. For me this included reactive thrombocytosis (PLT+200), decreased energy levels, decreased memory/concentration, and cold intolerance.

The best way to tell if the phlebotomies are in the right range for you is to pay attention the your treatment targets on the CBCs and also how your body s reacting to the treatment. I would note that when I stopped doing the regular phlebotomies and started on the interferons my quality of life improved. While the interferons can bring their own issues, some of us find that this treatment works better for us.

[Moonflowers_ in reply to hunter5582]

Hi Hunter, thank you for your reply. The only treatment targets I have been given for CBC is hematocrit 42. Yesterday before phlebotomy my CBC was:

WBC 14.5

Red blood cell count 5.51

Hgb 13.2

Hematocrit 43.5

MCV 79

RDW, RBC 19.9

Platelets count 873

The last time my iron and ferritin was checked was Feb 2024. Iron was 19 and ferritin was 4. My previous hematologist told me to take an iron supplement which I knew was wrong and I switched hematologists. My health care plan has limited doctor choices and no MPN specialist.

My symptoms seem okay, just worried if I’m getting the right treatment of just aspirin and phlebotomies at an increasing rate.

Thank you for any help you can provide.

[hunter5582 in reply to Moonflowers_]

Getting the right treatment depends on how you have set your treatment goals and what your risk tolerance is. The primary short term goal is to reduce the risk of thrombosis. This is accomplished by keeping the erythrocytosis in check since it is the primary risk factor. Many MPN experts use 42% or 43% for females and 45% for males. Some use 45% for everyone. This is a nuanced decision you would want to make with a MPN Specialist who can best define the rationale for your HCT target.

It appears you are not using platelet levels as a treatment goal. There has been movement away from trying to normalize platelet levels in PV since there is not a linear increase in thrombosis risk due to the thrombocytosis. It is worth noting that there is an increase in risk of hemorrhage as platelet levels get higher. It should also be noted that phlebotomy-induced iron deficiency can cause reactive thrombocytosis. This is another nuanced discussion to have with a MPN Specialist.

You did not mention any of the constitutional or secondary symptom we can experience with PV. If you are experiencing any of these then they should also be a treatment goal.

Another treatment goal to consider is reducing the risk of progression of the PV. This is where the treatment strategy could be different. Is this something you want to set as a treatment goal? Phlebotomies will have not affect risk of progression in any way. Some of us are opting for earlier intervention with an interferon for this purpose. The use of interferons for low-risk PV is now part of the NCCN guidelines. Whether this would be appropriate for you would be based on whether you wish to make reduced risk of progression a treatment goal and whether the intrinsic risks of the interferons are worth it to you. Again, this is a conversation to have with a MPN Specialist.

Phlebotomies + aspin has been a staple of PV treatment for many years. It remains in the standard protocols, but we now have other options. It is up to you and your MPN care team to determine what treatment option is best for you.

[Roxanne22]

Hello Moonflowers, just to share that I have used aspirin and venesection for 7 years since diag in 2017. I recently started interferon on the basis that my progression was at risk due to a high VAF reading, 77%, which until Sept I had no idea of! You havent mentioned VAF in your post, but if you are 'borderline' about treatment, then this may be a part of the puzzle that you wish to investigate. I am due my 2nd injectiom today but am amazed to report that even after one small dose, my 1st injection, a fortnight ago, my noghtsweats have already improved significantly so I am v pleased with the avenue I have now taken. I hope that this is helpful, very best wishes to you all. Sarah (ps learnt somethg new today, as my team only venesect when over .45 didnt realise that some females are urged to keep under the .43 mark. That's interesting. I have been having 5 or 6 per year.

[ainslie]

some experts used to say that if we are having 5-6 venisections a month that’s enough, average is 3-4 a year, my personal view is 9-10 is too high. Surprisingly your red counts are good, very surprisingly your MCV at 79 is near normal, when I stopt venisecting my MCV was 56/57 which is very iron deficient, haems tend to look at MCV to see how iron deficient you are, ferritin etc will always be low unless on cyto drugs. Your whites are getting up a bit and some experts like to keep them under 15.

I don’t know how good your doc is but it might be worth seeing a MPN expert to try and decide the best plan for you, I suspect most experts would suggest starting meds.

Meds for some might slow progression, some meds eg Peg., Bes, Rux can for some reduce allele burden which might be useful. Some meds may reduce thrombotic risk and some meds might make you feel better. If one drug doesn’t suit you you can try another perhaps.

The fact that your venisection rate is increasing indicates some change which could be addressed with the right meds. Time for considering some action I think, even if it’s getting a second opinion if you can.

[Jamesxyz]

I think that's alot of tps.

That's alot of wear and tear on your veins.

[saltmarsh]

These posts are spot on. It does seem like a lot of phlebotomies and that can have negative effects on iron levels and general well being. I originally had a doctor who was aggressive with phlebotomies and I became iron deficient. Changed doctors and new doctor stopped the phlebotomies - haven't had one in over 2 years and my numbers are fine. I am on HU and aspirin currently. Some afternoon fatigue but otherwise fine. Good luck sorting this out.

[Meatloaf9]

You have received some good advice. My MPN specialist does not like to treat PV with Phlebotomies only, he says it makes it too hard to control the Hct, but I am much older than you and that may make a difference. I am on HU and have not needed a phlebotomy since 2 wks after starting HU. I have no troubles with HU, some people do. I only had one phlebotomy but hated that one, I have poor veins, they said. There are now several different treatments for PV that a good MPN specialist could explain to you. If I were 53 I think I would try something that has a potential of slowing or stopping progression, a good MPN specialist can best explain your options. Best to you always.