PV positive & Jak2 neg - good thing??

Posted by wendy517 @wendy517, Jun 27, 2023

My understanding from reading is 95% of PV'ers are Jak2 positive, so I'm in the 5% with Jak2 neg. Is that a good thing? I can't seem to find much info, I'm asking my oncologist at my next visit in July.
Thank you all, this group is such a great support ❤️

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@buckaroobanzai

Hi Chella,

Yes, I have serious fatigue issues. I often need a nap in the afternoon. I seem to need a lot of sleep in general.

I must also pace myself. In fact, my law school accommodates me by splitting each of my exams into two pieces so that I only take one half exam per day during midterms and finals. I wonder how I will manage the bar exam!

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Hi back buckaroobanzai, I truly get the pacing one's self. Law school awesome learning category. I hope they also allow you to pace on the exam.
My mother could not teach me needlepoint or crochet because I couldn't sit still, as a kid and most of my life ...now? wow, sometimes I forget how long I've been sitting. I have been devoted to wearing a tracker and I make myself get up and move every hour even if it's just a couple of minutes. Im doing research on eating for and managing PV and getting myself stronger to either beat it up and let it know who's boss. LOL.... I usually dont rest well but fill my night with naps. There is an occasional night I will have normal sleep.

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@chella65

Hi back buckaroobanzai, I truly get the pacing one's self. Law school awesome learning category. I hope they also allow you to pace on the exam.
My mother could not teach me needlepoint or crochet because I couldn't sit still, as a kid and most of my life ...now? wow, sometimes I forget how long I've been sitting. I have been devoted to wearing a tracker and I make myself get up and move every hour even if it's just a couple of minutes. Im doing research on eating for and managing PV and getting myself stronger to either beat it up and let it know who's boss. LOL.... I usually dont rest well but fill my night with naps. There is an occasional night I will have normal sleep.

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Yes, I definitely relate.

Consider testing for sleep apnea and, if appropriate, CPAP. As fatigued as I am, things definitely improved after I started CPAP therapy. I love my CPAP (actually an APAP) machine!

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@chella65

My doctor who I had for several years retired so then I found an excellent DO however she stopped taking PCP work after the first year which was last year so then I found another for PCP items, well it was that PCP new to me who suspected the PV after lab work and questions and sent me to her group hematologist however when I called to that office the clerk was rude to me so I struck out on my own and found one closer to me. Then I sent the PCP her name and asked to change her referral. If they are rude at the start it's not a good sign. This hematologist/oncologist is connected to the cancer center in Houston so like I told her, if it's serious or not having both hematologist and oncologist in one I have covered both. I like her too so far.
Has anyone have trouble with dropping energy, like just bam! in the day like wow just a big drop where you feel like you should lay down and take a nap feeling.?

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I would love the name of your hematologist in Houston. I am searching and reading up on healthgrades.com to find someone within driving distance. My doctor doesn't believe I have PV although my symptoms are text book. The doc I liked moved two states away.

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Dr. Mary K. Crow MD with Millennium Physicians Medical Oncology & Hematology. They have multiple offices, Houston, Kingwood and The Woodlands but several others too. Im going to the Kingwood office. I didn't have to wait long for an appt where the other place they were booked way out. Hope this helps you but if she isnt a good fit dont stop looking.

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@chella65

Dr. Mary K. Crow MD with Millennium Physicians Medical Oncology & Hematology. They have multiple offices, Houston, Kingwood and The Woodlands but several others too. Im going to the Kingwood office. I didn't have to wait long for an appt where the other place they were booked way out. Hope this helps you but if she isnt a good fit dont stop looking.

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Thank you so much. I will check out that group. Katy or Cypress would be closer for me since I am in Brenham.

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@chella65

Hi back buckaroobanzai, I truly get the pacing one's self. Law school awesome learning category. I hope they also allow you to pace on the exam.
My mother could not teach me needlepoint or crochet because I couldn't sit still, as a kid and most of my life ...now? wow, sometimes I forget how long I've been sitting. I have been devoted to wearing a tracker and I make myself get up and move every hour even if it's just a couple of minutes. Im doing research on eating for and managing PV and getting myself stronger to either beat it up and let it know who's boss. LOL.... I usually dont rest well but fill my night with naps. There is an occasional night I will have normal sleep.

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Would love to know what you have found out about foods & PV. I’m sure proper eating helps a lot with fatigue also.

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@lynniej

Would love to know what you have found out about foods & PV. I’m sure proper eating helps a lot with fatigue also.

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So far, I may have been eating too much of good things. I mainly eat big plate of a mixed salad with a protein. Very little to no sugar and starch most days. However I seeing very little recommendation on nutrition specifically and what little I've found says not to eat alot of green leafy veges and beans and even mentions cold water fish. It's a little confusing because this is normally considered a healthy diet. I think my insurance will pay for a meeting with a dietician so I may go that route. I do eat alot of salads and seafood proteins. So for now I'm alittle confused, I've changed about half the leaf salad out with Cucumber and talapia is a warm water fish.

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@chella65

So far, I may have been eating too much of good things. I mainly eat big plate of a mixed salad with a protein. Very little to no sugar and starch most days. However I seeing very little recommendation on nutrition specifically and what little I've found says not to eat alot of green leafy veges and beans and even mentions cold water fish. It's a little confusing because this is normally considered a healthy diet. I think my insurance will pay for a meeting with a dietician so I may go that route. I do eat alot of salads and seafood proteins. So for now I'm alittle confused, I've changed about half the leaf salad out with Cucumber and talapia is a warm water fish.

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Things like spinach and red meat produce more hemoglobin so that's why they say to stay away from those kinds of foods.
The shoprite grocery stores all around my area have free Dieticians available for guidance and my local YMCA offers many free health related classes. Try asking your local social services if they know where you can get some free guidance, if your insurance will pay that is terrific. Maybe even try AARP.
Google foods that produce red blood cells and try to avoid them but I don't think there's any harm in a little now and then, I love spinach so I won't eliminate it, I've just cut way back.

Good luck!

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@chella65

So far, I may have been eating too much of good things. I mainly eat big plate of a mixed salad with a protein. Very little to no sugar and starch most days. However I seeing very little recommendation on nutrition specifically and what little I've found says not to eat alot of green leafy veges and beans and even mentions cold water fish. It's a little confusing because this is normally considered a healthy diet. I think my insurance will pay for a meeting with a dietician so I may go that route. I do eat alot of salads and seafood proteins. So for now I'm alittle confused, I've changed about half the leaf salad out with Cucumber and talapia is a warm water fish.

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Here's a good article, PV is opposite of anemia basically, this article explains what to eat to produce more red blood cells so its foods to limit if you have PV..
https://www.verywellhealth.com/how-to-increase-red-blood-cells-5211834#:~:text=Vitamin%20B12%20helps%20the%20body,fish%2C%20dairy%2C%20and%20eggs.

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@chella65

So far, I may have been eating too much of good things. I mainly eat big plate of a mixed salad with a protein. Very little to no sugar and starch most days. However I seeing very little recommendation on nutrition specifically and what little I've found says not to eat alot of green leafy veges and beans and even mentions cold water fish. It's a little confusing because this is normally considered a healthy diet. I think my insurance will pay for a meeting with a dietician so I may go that route. I do eat alot of salads and seafood proteins. So for now I'm alittle confused, I've changed about half the leaf salad out with Cucumber and talapia is a warm water fish.

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I have just started a plant based diet. I’ve avoided red meats and high iron content greens like spinach for most of the past 10 years, I believe it has somewhat helped. I am now on Jakafi and have a hemotcrit under 40%.
My next goal is to cut out sugars which I know are bad for me!!

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