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Posts (7)

Tue, Feb 12 9:13pm · Polycythemia Vera in Blood Cancers & Disorders

@simple27 — Agree that my anemic hematocrit points AWAY from PV. I wish I could convince my oncologist of how ridiculous this diagnosis is. Almost like saying "you are obese because you weigh 80 pounds." I suppose it is POSSIBLE to have masked polycythmia vera, but that's usually only true if there is substantial, consistent bleeding. But, in any case you cannot DIAGNOSE PV BASED on a low hematocrit– it makes no sense.

My EPO levels also point away from PV, as they are high. So, yes, my brilliant oncologist diagnosed me with PV based solely on the JAK mutation, while I am the OPPOSITE of two of the other criteria, and have never had a bone marrow biopsy.

Sun, Jan 13 7:47am · Polycythemia Vera in Blood Cancers & Disorders

@gjb1 – My EPO is high as well. In my case the high EPO makes sense, given my hematocrit is anemic. I'm still confused by my PV diagnosis, given now the only criteria I meet is that I have the JAK2 mutation. Feels a bit to me like an "eeny-meeny-miney-mo" diagnosis. It could be possible that I'm in early stage PV, but, currently there is no bone marrow biopsy to confirm that, and two of the bloodwork parameters (hematocrit/hemoglobin and EPO levels) are contradictory to the diagnostic criteria.

Fri, Jan 11 9:57am · Polycythemia Vera in Blood Cancers & Disorders

As a follow up to my question, I searched for diagnostic criteria for PV (since they kept emphasizing that DIAGNOSTIC criteria is a hematocrit over 32." They kept using "32" as some magical number. I know that internet resources aren't always accurate, but EVERY paper I have found in the peer-reviewed literature states that one of the major diagnostic criteria for PV is: "Hemoglobin >16.5 g/dL in men and >16 g/dL in women, or hematocrit >49% in men and >48% in women, or red cell mass >25% above mean normal predicted value" (reminder, my hemoglobin today was 10.7, and hematocrit 33, my red cell mass has never been studied." So, where did this magical number of 32 come from? And, does it make sense considering that value would make me anemic (not polycythemic)? Not sure if this is the case, but OLD criteria (from 1970 group), included as one of the major diagnostic criteria as "Category A criteria are as follows: Total red blood cell mass ≥36 mL/kg in males or ≥32 mL/kg in females" I'm wondering if I was literally just diagnosed with PV based on the WRONG measurement (as I have never had red cell mass measured), from an old set of criteria. This would explain the PV diagnosis, which is seemingly contradictory with my (albeit slightly) anemic hemoglobin/hematocrit. Any thoughts on this explanation, or, just in general about if/ow a definitive diagnosis of PV can be made based on just the JAK2 mutation and LOW RBCs?

Fri, Jan 11 9:57am · Polycythemia Vera in Blood Cancers & Disorders

Hi all. In December, I was diagnosed with a JAK2 mutation. Finally had my appointment with hematologist/oncologist today. They gave me a definitive diagnosis of Polycythemia Vera. I found this shocking, given that I am always slightly anemic (Hemoglobin is in 10-11 range, Hematocrit averages around 34-35. My white blood cell count is always a bit high- in the 15-25K range, platelets are typically in the high-end of normal range. Does this make sense to be diagnosed with Polycythemia Vera with anemic blood counts? I asked for the rationale, and was told (a) PV affects all blood cell types, not just RBCs, so that's why your white count is high (or those counts could be due to stress alone they said. (b) They kept emhasizing that the DIAGNOSTIC criteria for PV is "any hematocrit over 32" — which just doesn't make sense to me, that an anemic hematocrit would indicate PV. Maybe this is just a diagnosis of exclusion? I'm very confused by this diagnosis. Thinking about needing a second opinion, in any case.

Dec 26, 2018 · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Thanks chadknudson. It's great to hear a positive experience, and your response makes me hopeful that the effects will be minimal.

Dec 26, 2018 · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Thanks for the article. It was useful. It seems to me when discussions get moved, they are just buried in old discussions, so I'm not sure this will not get any replies other than that of the moderator. But, I appreciate the article you did send. It is very useful, and along with some other internet research, indicates that it is possible to test positive for the mutation without having overt disease. Given my consistently high WBC counts, I'm going to *guess* that the mutation has already had some effect, but will have to wait for a bone marrow biopsy to be certain. And, my allele burden is significantly above the cut off typically given for "mutation in healthy individuals" …although my testing was done in purified granulocytes, while the articles report testing in whole blood, so I'm not certain if the numbers can be meaningfully compared. Ugh! I have just enough information to be worry over the holidays, without enough information to have any sort of a plan.

Dec 26, 2018 · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Hello all. About a year ago, I had a nephrectomy due to renal cell carcinoma. Since then, I've had bleeding events, high WBC count (up to 25,000), corresponding high granulocyte counts, and slight anemia, and overwhelming waves of nausea. My oncologist always chalked it up to stress and anxiety. But, recently did a test for JAK2 mutation and it came back positive. I found out about it online from the diagnostic lab results, my oncologist refuses to talk to me about it on the phone, and now need to wait weeks until after the holidays for appointment. Of course, this leaves me to searching the internet and trying to piece together information– never a good thing! I can see this mutation is positive in X% of patients with PV, ET, PMF, but what I'm trying to figure out is the opposite statistic– what is the possibility that I HAVE this gene, but DO NOT have any problems associated with the gene. I know that nobody can diagnose me online, but wondering if it's POSSIBLE to have the mutation with no associated disease?