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Polycythemia Vera: Just been diagnosed

Posted by atir @atir, Nov 30, 2018

Have been diagnosed with polycythemia Vera recently, Any feed back

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rabab101 | @rabab101 | Mar 30, 2023
In reply to @simple27 "@apr931 Hi there! I wanted to chime in on your question regarding the number 32. I..." + (show)
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@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. 🙂

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Hello and I am new to this. My brother just got his JAK2 V617F back and it said NOT DETECTED. What does that mean?

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Colleen Young, Connect Director | @colleenyoung | Mar 30, 2023
In reply to @rabab101 "Hello and I am new to this. My brother just got his JAK2 V617F back and..." + (show)
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Hello and I am new to this. My brother just got his JAK2 V617F back and it said NOT DETECTED. What does that mean?

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@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/.

What further testing is your brother scheduled for to confirm or rule out polycythemia vera?

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csgreetings | @csgreetings | Apr 2, 2023

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.

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inevanmac | @inevanmac | Apr 3, 2023
In reply to @csgreetings "Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure..." + (show)
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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.

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Don’t be, just trust your specialist. It is manageable with medication.

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nypara66 | @nypara66 | Apr 3, 2023
In reply to @csgreetings "Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure..." + (show)
Profile picture for csgreetings @csgreetings

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.

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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.

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Lori, Volunteer Mentor | @loribmt | Apr 3, 2023
In reply to @csgreetings "Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure..." + (show)
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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.

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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.

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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csgreetings | @csgreetings | Apr 3, 2023
In reply to @csgreetings "Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure..." + (show)
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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.

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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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seamus1010 | @seamus1010 | Apr 3, 2023
In reply to @csgreetings "Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure..." + (show)
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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.

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An unexpected complication has occurred in my situation.

I developed peripheral artery disease which led to a blocked femoral artery. To correct that, I had an angioplasty and a stent about two years ago. Subsequently, I was diagnosed with PV. Recently, the stent found to be occluded and will need to be replaced very soon. The occlusion is most likely due to the excess RB cells and platelets.

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nypara66 | @nypara66 | Apr 3, 2023
In reply to @chadknudson "I've had PV for three years and do phlebotomies generally about once a month. In discussion..." + (show)
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I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased -- I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high -- my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).

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Hello, I read you do your phlebotomies about once a month? Are you taking Hydroxyurea also? I currently am and it does lower my platelets substantially. I also noticed that after a phlebotomy, my platelets seem to drop about 100 pts? My doctor has the same expectations, Hematocrit at 45 and platelets below 600. I’m newly diagnosed and they are still trying to figure out dosage etc.

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albertedward | @albertedward | Apr 4, 2023
In reply to @csgreetings "Still in the diagnosis stages, female age 68. Gotta say I’m very scared and not sure..." + (show)
Profile picture for csgreetings @csgreetings

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.

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I found out 5 months ago and realize I had it for some time.It gets better in time as you get a schedule for hu and blood drops.It is scary at first and such a surprise but this site has given me much info and support.Hope you all have a good day.

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