Jak 2 Positive PV diagnosed 6.5 years ago- Aspirin 0.75mg and until now Venesection every 3-4 mths
Recently moved home and changed hospital care. During the transition I had my last venesection Oct 27th. A blood Test Mid January where HCT was 0.38 just had my results for todays blood test and its 0.39. So no venesection needed . Thats 5 mths since the last one whereas previously its 3-4 mths. It will be 7-8 mths to my next blood test.
Feeling pretty wasted but am worried something is changing in my condition. I'm waiting to speak with my new consultant face to face just had a brief call on the phone, but they don't seem concerned at all that HCT is low and not increasing which I thought was what PV did.
It just seems very odd my HCT isnt climbing as much as it used to
Any thoughts as to what may be happening or any advice
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Andyf24
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You would need a more complete analysis to answer the question about your HCT. Specially, you would need a full iron panel as well as some additional testing (CMP, possible other nutritional analysis). The intention of the venesections is to make you iron deficient to control the erythrocytosis. The intent is to reduce the erythrocytosis without overshooting the mark and making you anemic. Many reference ranges for males would rate anything below 0.40 as anemia. What matters more than the different reference ranges is how you feel.
I was in a similar situation. We overshot the mark and my HCT dropped all the way down to 0.32. I was very severely iron deficient due to the repeated venesections. I let my body slowly recover by eating an iron-rich diet. Note that iron is not easily absorbed. Once you reach a certain point, it it hard for the body to restore iron the iron levels needed to produce RBCs.
Over a longer period of time I came to realize that even when the anemia resolved, the iron deficiency was still causing adverse effects (fatigue, loss of concentration, alopecia, reactive thrombocytosis). This lead me to change my treatment plan and I started treatment with the interferons (Pegasys/Besremi). The IFNs have been a much better treatment approach for me. Better for controlling and erythrocytosis and thrombocytosis. Easier to tolerate than venesections/iron deficiency. Definite improvement in quality of life.
Suggest that you consult with a MPN Specialist about your current status and treatment options. Sometimes we need to remind our care team about the priority for quality of life and that certain adverse effects are not acceptable. We each tolerate different levels of HCT and iron deficiency differently. It is not just about numbers on a lab. It is about how you are experiencing managing the MPN and your treatment outcome.
Hunter amazing that's completely helped my understanding, to be fair I managed to get a call with the consultant and she is going to review my Iron "film" . I try not to get too bogged down in the detail and try and live my life as much as I can but I think what you say makes total sense and my iron is now too depleted....I will be speaking with her again soon and I'm now armed with more knowledge to advocate. Really appreciate your advice my friend! 🙂
Here is a bit of information that will help to understand your iron panel.
IRON PANEL
• Serum iron. This test measures the amount of iron in your blood.
• Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.
• Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.
• Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.
• Transferrin saturation. This test measures the percentage of transferrin that is attached to iron.
First thing is I dont think you have anything to worry about regarding your condition changing, if diag 6.5 years ago its very very unlikely to be changing so soon, what is more than likely is that you dont need a venisection because you have been over venisected, I have been there several times. Venisection is designed to make you iron deficient to slow down the process of making more red cells , more reds equal higher Hct and Hgb. 39/39 is very low for a male and even a female, I wonder why you have been over venisected.?
Most haems will focus on your MCV (mean cell volume) to assess your degree of iron deficiency. This is the size of your red cells, when you venisect there is less iron to make big red cells but your PV still wants to make plenty red cells so it makes more smaller ones so when on venisection only red cells can be above normal with normal Hct because Hct is a calculation of RBCxMCV=Hct. The other iron markers such as Ferritin etc are considered but the MCV is the actual measure of how effective the vensisecting is going. On diagnosis most peopel will have a MCV in normal range ie 78-98 (UK) but as you start venisecting the MCV will fall and most on venisection will drop to MCV in 60's or 50's ,as the MCV drops you will need less venisections. When I was venisecting only for PV afer about 7 years my MCV dropped to 56 which is probably a record low, at that point my Hct was still 43 and Hgb about 140 and I could go for many months without venisections (like you now) but I was very iron deficient and felt strung out and tired, once my MCV went back up to 57-79 I needed to venisect again, it will go back up slowly on its own, be careful about adding iron in supplement form as it will raise Hct usually too quickly, my Haem recommended red meat with a glass of orange juice which he reckoned supplied a steadier slow release form of iron.
Whether you stay on venisections or not is a decision for you and your haem to make, all drugs have pros and cons. I am now on Ruxolitinib and feel beter overall with normal counts and iron levels, others do well on Pegasys or Bes and UK haems seem to prescribe HU first line, the pros and cons of all of these are maybe something for a different post you could do.
In the meantime, your venisecting regime is definitely not optimal (unless there are other factors you havnt mentioned yet?), males with PV should keep their Hct under 45, you are likely to feel better with a higher Hct and Hgb. What I used to do is get regular blood tests at my GP and never get a venisection if I didnt need one, with a Hct of 38 on venisection only you are bound to be more iron deficient than you ned to be. Or get a blood test a week before they have scheduled you for a venisection, get a printout of the results and check yourself if you are at 45 or near, I wouldnt venisect if mine was 43 or less . A word about testing , different labs will give different results a bit so factor that in if you moved hospitals, also try to get your blood test at the same time eg say 11am always because Hct varies throughout the day and Hct is higher on rising and drops throughout the day as you become more hydrated. I try to avoid 9am likely to be a bit dehydrated, if the want 9am ,wake at 7 and drink two glasses of water.
The other thing I used to do is instead of venisecting 450ml every 3 months or so I used to venisect 125ml monthly, this gives a very steady Hct , mine was nearly always 43 on that regime. This eased the iron deficiency symptoms but eventually after 7 years of venisecting I started Rux having failed on Peg. But some people are fine on venisectiosn only for decades. To drug or not to drug is a seperate discussion.
I hope that wasnt info overload, the main message is dont worry, as your iron rises you will need venisecting more often again and try not to over venisect.
At first I was thinking the fact your Hct isn't going up was a great thing (means treatment is working), but then I realized being male, you are concerned about your Hct being too low. Do I have that correct? That is your concern?
Just curious Andyf24, how's your Hgb? Are you still in range or have you dipped into the Anemic range. I also get venesections and had been getting them every two weeks until my HCT went down to 39 (it had been 52.2 and 7my target is 42 for female). I've been able to go as long as 6 weeks without one now. My blood levels are checked every two weeks. I am seen by an MPN specialist at a major cancer center. I am also seen by another specialist there for a different cancer-related issue. She suggested eating a small amount of steak to get me out of the anemic range, which it did. By doing that Hgb went back into the normal range and my HCT increased a slight bit as well.
As so many on here say, we are all different, respond differently to different treatments, have dr.s who tell us different things, and labs which have different ranges. Hopefully you will get some answers to your questions from your dr. soon. The not knowing is sometimes the hardest part.
Hey Ainslie....thank you...I definitely value your insight. I think what you describe is exactly the case. I would only ever get a venesection when over the 45 mark. So I never really considered "quarterly" treatments as being over venesected.... but now I know more about the Iron element from Hunters post yesterday and researching some more ... seems that is exactly what has gone on. Thank you.
Hi Andy! I am PV Jak2 (20 yrs. now) and have been on 2x aspirin and day and get a plebotomy every 3-4 months. The exact situation that your describing happened to me last year. My HCT quit climbing and I went 5 months. I spend the winters in Arizona and go back to Alaska in the summer. I've had to find the right doctors in Az. which was difficult at first. My Alaska hematologist was certain that things were changing and so I had a BMB which showed no progression or increased fibrosis and no other bad driver mutations. Wonderful results! I knew all along that it was probably severely low iron reserves and ferritin.
My workout regimen in Arizona is really high and I think contributes to the iron depletion. I started taking iron pills which immediately jump started my bone marrow and my HCT steadly climbed. Now I have to balance taking iron pills so my HCT doesn't climb too fast but don't have the terrible low iron symptoms. The low iron symptoms for me is extreme mental fatigue and my hair starts breaking off. Have you had your iron checked? Good luck to you! Kerry
Andy, I wanted to add to my other post that your HCT is very low. I don't get phlebotomys until my HCT is 45-47. It used to be 42 but it was making me super fatigued because of low iron. Have you doctors look into your iron levels and perhaps changing the HCT level to a higher level. Kerry
Hey thanks..not yet will be speaking to them once the iron analysis is done, I feel less worried now thanks to everyone's knowledge...and am already changing my diet to support natural iron inputs and awareness....
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