@simple27 I took my promethease jak2 variant information with me to my Dr appointment. I’m showing three areas of increased risk. I’m now waiting for Jak2 lab results. Blood was drawn last Thursday (feb14) at Mayo, any idea on the turn around time for results there?
@simple27 I took my promethease jak2 variant information with me to my Dr appointment. I’m showing three areas of increased risk. I’m now waiting for Jak2 lab results. Blood was drawn last Thursday (feb14) at Mayo, any idea on the turn around time for results there?
For everyone’s info, I messaged through the patient portal and was told up to 10 days for Jak2 results. But the nurse suggested I check in at 7 days in case it is available. Wonder why it takes so long.
I just hope this isn't preventing you from getting the correct treatment/relief. I would imagine it does and understand your frustration. I have the exact opposite situation. High hemoglobin and hematocrit, low EPO but no JAK2 mutation. According to a DNA report that I just ran the other night, I do have variants in my JAK2 genes so I emailed my hematologist to ask if that would be helpful in a diagnosis. I'm pretty sure he doesn't like me much because I am VERY proactive in my healthcare. Have to be. I'm just a number to these doctors.
@simple27 I took my promethease jak2 variant information with me to my Dr appointment. I’m showing three areas of increased risk. I’m now waiting for Jak2 lab results. Blood was drawn last Thursday (feb14) at Mayo, any idea on the turn around time for results there?
@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.
I just hope this isn't preventing you from getting the correct treatment/relief. I would imagine it does and understand your frustration. I have the exact opposite situation. High hemoglobin and hematocrit, low EPO but no JAK2 mutation. According to a DNA report that I just ran the other night, I do have variants in my JAK2 genes so I emailed my hematologist to ask if that would be helpful in a diagnosis. I'm pretty sure he doesn't like me much because I am VERY proactive in my healthcare. Have to be. I'm just a number to these doctors.
@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.
According to the Hematologist, even a high EPO of 61 is still lower than what she would expect with secondary polycythemia from a tumor etc. Continuing to treat me as if PV with phlebotomy.
Do any of you who have been diagnosed with PV experience flushing of your skin? Specifically face, neck and chest areas. Sometimes spreading down the arms? Like this...
I’m a pediatrician working for more than 27 years.I have been diagnosed as a polycythemia patient 10 years ago with ability to mention either a primary or secondary
I did everything for diagnosis
Erythropoietin
Sonar kidneys
Bone marrow biopsy
MRI brain
Jack test
Everything and nothing is there
What I used to do is venisection every 3 month when hematocrit ratio exceeds 52 and when HB reaches 17gm
The best thing I noticed that vitamin C delays the intervals between blood donation
Now I’m taking Vitamin C 1 gm daily regulary for 6th months
Good news that HCT back to 48 without venisection for 2 times 3 months apart
Also, I am in no way a medical professional. However since my journey began of being evaluated for PV in 2015, I have become a 'professional' researcher in the disease. I have spent countless hours researching since 2015. I am only trying to share what I have learned and I truly wish you all the very best.
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@thlas1971 Hi there! Sorry for the late reply. I uploaded my 23 and Me raw data onto livewello and these are my JAK2 results...
For everyone’s info, I messaged through the patient portal and was told up to 10 days for Jak2 results. But the nurse suggested I check in at 7 days in case it is available. Wonder why it takes so long.
@simple27 I took my promethease jak2 variant information with me to my Dr appointment. I’m showing three areas of increased risk. I’m now waiting for Jak2 lab results. Blood was drawn last Thursday (feb14) at Mayo, any idea on the turn around time for results there?
I just hope this isn't preventing you from getting the correct treatment/relief. I would imagine it does and understand your frustration. I have the exact opposite situation. High hemoglobin and hematocrit, low EPO but no JAK2 mutation. According to a DNA report that I just ran the other night, I do have variants in my JAK2 genes so I emailed my hematologist to ask if that would be helpful in a diagnosis. I'm pretty sure he doesn't like me much because I am VERY proactive in my healthcare. Have to be. I'm just a number to these doctors.
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4 Reactions@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.
-
Like -
Helpful -
Hug
1 ReactionAccording to the Hematologist, even a high EPO of 61 is still lower than what she would expect with secondary polycythemia from a tumor etc. Continuing to treat me as if PV with phlebotomy.
Do any of you who have been diagnosed with PV experience flushing of your skin? Specifically face, neck and chest areas. Sometimes spreading down the arms? Like this...
-
Like -
Helpful -
Hug
1 ReactionI’m a pediatrician working for more than 27 years.I have been diagnosed as a polycythemia patient 10 years ago with ability to mention either a primary or secondary
I did everything for diagnosis
Erythropoietin
Sonar kidneys
Bone marrow biopsy
MRI brain
Jack test
Everything and nothing is there
What I used to do is venisection every 3 month when hematocrit ratio exceeds 52 and when HB reaches 17gm
The best thing I noticed that vitamin C delays the intervals between blood donation
Now I’m taking Vitamin C 1 gm daily regulary for 6th months
Good news that HCT back to 48 without venisection for 2 times 3 months apart
-
Like -
Helpful -
Hug
3 ReactionsAlso, I am in no way a medical professional. However since my journey began of being evaluated for PV in 2015, I have become a 'professional' researcher in the disease. I have spent countless hours researching since 2015. I am only trying to share what I have learned and I truly wish you all the very best.
-
Like -
Helpful -
Hug
2 Reactions