Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure what to expect. Also live at a higher altitude and live in a somewhat stressful environment. Any thoughts or words of wisdom would be appreciated. And thank you.
Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure what to expect. Also live at a higher altitude and live in a somewhat stressful environment. Any thoughts or words of wisdom would be appreciated. And thank you.
Good morning, @csgreetings and welcome to Mayo Connect. So many of us in this support group have been exactly where you are…receiving a new diagnosis and not knowing what to expect. While Polycytmenia Vera (PV) is considered a blood cancer it is generally very slow to develop and as @inevanmac mentioned in her reply to you, it is often managed with medication and sometimes phlebotomies, which removes excess blood.
Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure what to expect. Also live at a higher altitude and live in a somewhat stressful environment. Any thoughts or words of wisdom would be appreciated. And thank you.
I’m a 56 yr old female and was just diagnosed with PV in January Jak2 positive. It’s been a shocker and a roller coaster ride thus far. Taking HU and having phlebotomies has brought my numbers down. Still trying to get to some sort of routine, correct dosage and schedule with phlebotomies. Currently getting labs every other week. From what I’ve read, we can live a pretty normal life once it’s under control.
Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure what to expect. Also live at a higher altitude and live in a somewhat stressful environment. Any thoughts or words of wisdom would be appreciated. And thank you.
Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure what to expect. Also live at a higher altitude and live in a somewhat stressful environment. Any thoughts or words of wisdom would be appreciated. And thank you.
@rabab101, I found this information and negative or non-detectable JAK2
"Negative results for all JAK2 mutations does not necessarily rule out an MPN—the person may have a JAK2-negative MPN or the JAK2 mutation was not detected during testing. The JAK2 tests are performed on the genetic material found in white blood cells called granulocytes (from blood or bone marrow) and red cell precursors (from bone marrow). Not all granulocytes and red cell precursors will possess the JAK2 mutations. The proportion of affected cells will vary from person to person and may change over time. If there is only a small number of cells that have the mutation in the blood sample tested, then it is possible that the mutation will not be detected." You can read more here:
- JAK2 Mutation Test https://www.testing.com/tests/jak2-mutation/#:~:text=The%20JAK2%20V617F%20test%20may,results%20associated%20with%20these%20MPNs.
What further testing is your brother scheduled for to confirm or rule out polycythemia vera?
@apr931 Hi there! I wanted to chime in on your question regarding the number 32. I have no idea where that came from. As of your post that I am responding to, where your hemoglobin was 10.7 and hematocrit 33, both of those results are below normal. For a man and for a woman. Polycythemia vera diagnostic criteria includes one of which that is a highly elevated hemoglobin and hematocrit. Which you do not have. However, another diagnostic criteria for PV is the JAK2 mutation. I'm guessing your PV diagnosis was based solely on the JAK2 mutation, which would be inaccurate according to your hemoglobin & hematocrit levels. Throughout my extensive research into PV and myeloproliferative disorders in general, your particular results seem to point more towards essential thrombocythemia (ET), or primary myelofibrosis (PMF). Your low hemoglobin and hematocrit point away from PV. The diagnostic criteria for PV was recently-ish revised in 2016, and still your low hemoglobin/hematocrit levels point away from PV. Bless you & fight the good fight! Just trying to provide some (hopefully) helpful information. 🙂
Yes they did the JAK test. We're not worrying about clotting because 28 years ago I had open heart surgery so I am on Warfarin all the time and my INR is checked monthly to weekly. And I am 82 years old but very active I've been out in my garden this morning. And I have done research on any of my conditions so much so that I have even done my own diagnosis.
Ok! Thanks, the extra information you gave now makes more sense for the phlebotomies without a forma diagnosis. ☺️ I’m jealous of you being out in your garden! Mine are still buried under many feet of snow! Hoping to see some spring flowers soon, but I’m not holding my breath. 🌷
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Thank you all for your comments. A tough or scary road is always easier with friends and mentors. Carol in New Mexico
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3 ReactionsGood morning, @csgreetings and welcome to Mayo Connect. So many of us in this support group have been exactly where you are…receiving a new diagnosis and not knowing what to expect. While Polycytmenia Vera (PV) is considered a blood cancer it is generally very slow to develop and as @inevanmac mentioned in her reply to you, it is often managed with medication and sometimes phlebotomies, which removes excess blood.
Here are a couple of websites that give some helpful information about PV, symptoms and treatments.
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
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https://www.hopkinsmedicine.org/health/conditions-and-diseases/polycythemia-vera
The benefit this amazing support group is to be able to connect with others who are sharing a similar experience. In the discussion posted below you’ll be able to meet @doris4benny @pamdg @arlenerun @nypara66 @seamus1010 and others or family members who have PV.
Polycythemia Vera: Just been diagnosed
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
Regarding altitude, this is a reply I posted for another member who has PV and concerned about the impact of high altitude. https://connect.mayoclinic.org/comment/737086/
Were you having any symptoms before your diagnosis? Did your hematologist mention if you have a JAK2 mutation which can be a cause for PV?
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1 ReactionI’m a 56 yr old female and was just diagnosed with PV in January Jak2 positive. It’s been a shocker and a roller coaster ride thus far. Taking HU and having phlebotomies has brought my numbers down. Still trying to get to some sort of routine, correct dosage and schedule with phlebotomies. Currently getting labs every other week. From what I’ve read, we can live a pretty normal life once it’s under control.
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5 ReactionsDon’t be, just trust your specialist. It is manageable with medication.
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2 ReactionsStill in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure what to expect. Also live at a higher altitude and live in a somewhat stressful environment. Any thoughts or words of wisdom would be appreciated. And thank you.
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1 Reaction@rabab101, I found this information and negative or non-detectable JAK2
"Negative results for all JAK2 mutations does not necessarily rule out an MPN—the person may have a JAK2-negative MPN or the JAK2 mutation was not detected during testing. The JAK2 tests are performed on the genetic material found in white blood cells called granulocytes (from blood or bone marrow) and red cell precursors (from bone marrow). Not all granulocytes and red cell precursors will possess the JAK2 mutations. The proportion of affected cells will vary from person to person and may change over time. If there is only a small number of cells that have the mutation in the blood sample tested, then it is possible that the mutation will not be detected." You can read more here:
- JAK2 Mutation Test https://www.testing.com/tests/jak2-mutation/#:~:text=The%20JAK2%20V617F%20test%20may,results%20associated%20with%20these%20MPNs.
What further testing is your brother scheduled for to confirm or rule out polycythemia vera?
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1 ReactionHello and I am new to this. My brother just got his JAK2 V617F back and it said NOT DETECTED. What does that mean?
Treatment for PV causes low iron. That is the goal.
My husband was just diagnosed with PV. His iron level is also very low. Tomorrow he starts iron infusions. Do any of you have a similar problem?
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1 ReactionOk! Thanks, the extra information you gave now makes more sense for the phlebotomies without a forma diagnosis. ☺️ I’m jealous of you being out in your garden! Mine are still buried under many feet of snow! Hoping to see some spring flowers soon, but I’m not holding my breath. 🌷