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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (400)Comment receiving replies
Hi Lori, thanks for all your amazing support and information. My family is finding the articles very helpful as well.
I am not Jak2 positive but the oncologist said I have PV and won't likely need a bone marrow biopsy for a couple/few years. I'll get the ultrasound of my spleen for a baseline, I'm not a large person and he said there would be a bulge if it were enlarged with my size and I have no pain there. I'll get a brain & lung scan at some point for a baseline with the fact I've had bad headaches my entire life, often due to allergies/sinus. The more recent past few years have been different, not the same location and stabbing intense pain so just to be sure nothing else is going on or to see if I've ever had a bleed. I've been in major car accident with internal bleeding (my spleen but it stopped after a few days, more like a leak) and have had falls of 25+ ft with broken bones etc. I was rather active and a bit daredevil as a kid, my back is paying for it with a complete degenerated disc but keep it in check with keeping in shape. That has been harder lately with the SIBO last year and then the PV creeping up on me.
Sorry for novel, wanted to give some background.
If I'm not Jak2 positive could that mean it may not be PV but could be something else?
My lungs are sensitive and I get pneumonia easily but always when I run myself into the ground and didn't rest when quite sick.
Is there a good article that explains if you're Jak2 negative, I can still have PV with my hemoglobin & hemocrit levels?
Thank you for your help & support!
Replies to "Hi Lori, thanks for all your amazing support and information. My family is finding the articles..."
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Hi Wendy, it’s my pleasure to help any way I can. Going through my leukemia and bone marrow transplant journey, I didn’t know a thing about that cancer or the transplant, nor anyone who had gone through either of those.
Fortunately I had amazing medical teams for both and learned a great deal, especially from my transplant team at Mayo-Rochester. But no matter how much they told me that I would feel better in a few months it was hard to fathom a positive future. Until about 2 months after my transplant, I was in the lab waiting to be called for blood work. I met 2 people in waiting room…a woman 2 years post and a gentleman right next to her who was 5 years post transplant. We talked at length and I was so inspired and encouraged to see what would be possible for me! I learned the value of a mentor…they gave me hope. ☺️ That’s why I’m here.
You obviously have that all important spirit of endurance. That keeps you moving forward and adapting to your newly diagnosed condition. I think you’re finding out that you need to listen to your body. If you’re tired, you need rest. I know how hard that is when you’re a ‘mover and a shaker’!! I’m the same way. Resting? What’s that? 😅
Thank you for sharing your story! Wow, you were quite the little daredevil. Makes for awesome stories and memories but hard on the body. It’s really inspiring to hear that you keep right on pushing yourself in spite of all the discomfort. I also hope your gut issues get back under control. Do you know what prompted the first case of SIBO? Were you on antibiotics?
Back to the PV…sorry this is getting longer than I intended.
From my limited understanding, there are several subtypes of PV. If you’re not JAK2 positive there you can still have high hemoglobin and hematocrit levels with primary PV. It isn’t always the JAK2 mutation.
There is also secondary PV which is caused by an underlying condition where, basically, the body is being deprived of oxygen for some reason, such as sleep apnea for example. That can cause the kidneys to call for more red blood cell production to increase the oxygen level. It’s driven by a hormone in the blood called erythropoietin (EPO). One way to discern the difference, in secondary polycythemia, your EPO level will be high and you’ll have a high red blood cell count. In primary polycythemia, your red blood cell count will be high, but you’ll have a low level of erythropoietin (EPO)
A little heavy reading:
https://www.hematologyandoncology.net/archives/january-2019/diagnosing-or-ruling-out-polycythemia-vera-in-patients-with-erythrocytosis/
You may have seen this article before:
https://www.healthline.com/health/secondary-polycythemia#causes
Do you remember seeing an EPO reading in your blood work?