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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csgreetings | @csgreetings | Apr 14, 2023

In reply to @nypara66 "Hi Carol! Yes, sometimes you feel light headed and get a slight blurred vision that comes..." + (show)

Thanks Kit. Appreciate the kind words. I'm 68 and I think I may have had this a while. Looking back I've had syptoms for a while. My former doctor last fall did a 'complete' blood work up on me, but failed to do a HCT. I thankfully have switched physicians and am now with a University medical system, which I am so glad for. Will keep you posted - and thanks. Carol

themyth | @themyth | Apr 14, 2023

In reply to @csgreetings "Hello NYpar66 (New York?), I am just in the infancy of all this, and I too..." + (show)

Hey Carol! I was diagnosed in December 2022. So I’m fairly a newbie as well. I was completely floored with diagnosis! My spouse is the type just to brush it off and say oh you will be okay. I struggle with fatigue, joint pain, nose bleeds, bleeding gums, headaches and terrible discoloration and spots on feet/legs. But the good news is that the phlebotomies help me! I can feel a big difference. They were hoping to try every 3 months, after the first 3 months helped get numbers leveled. But I went primary dr last week and my hemacrit has came back up to 54. I’m 53 year old male. I’ve been having symptoms for several years. Terrible kidney stones. I’m just glad to find out what’s going on. Hang in there! It’s not a death sentence like you will read online! Finding good dr and taking care of yourself, you can live fairly normal. The Myth in TN

nypara66 | @nypara66 | Apr 14, 2023

In reply to @csgreetings "Hello NYpar66 (New York?), I am just in the infancy of all this, and I too..." + (show)

Hi Carol! Yes, sometimes you feel light headed and get a slight blurred vision that comes out of no where but passes pretty quickly. My biggest issue currently is the tingling in my hands/ feet and arms/legs(not as often) I’m taking the baby aspirin and Hydroxyurea. After being diagnosed and put on the meds I had four weekly phlebotomies and everything was great so he took me off meds. Next phlebotomy was about six weeks later. Labs every two weeks, then showed platelets back just over 600 so back on the meds for a month now. I really don’t want to take them and read the tingling can be the PV and the meds can cause it also BUT my body will probably adjust to it in time. I hope so! I’m a 56 yr old female and have never had any health issues and didn’t take any daily meds until this. My husband cried and is so scared for me but I feel like I just need to stay on it and make sure I do my labs. It took a while to process… Also, many things I read on line weren’t true when I asked the oncologist, so try not to obsess with reading. KIT

csgreetings | @csgreetings | Apr 14, 2023

In reply to @nypara66 "Hello I’m new to PV also. Recently diagnosed in January this year. Are you getting phlebotomies..." + (show)

Hello NYpar66 (New York?), I am just in the infancy of all this, and I too had covid in the past 6 weeks (took me 3 weeks to get back to feeling like myself again). I have one more test before my journey begins, though I have all the symptoms and we are moving forward with the 'diagnosis' of polycythemia. I'm scared, my husband isn't overly supportive and is responding as pretty clueless. I had a horrble dizzy event a couple of weeks ago that has never happened to me before. I appreciate your contacting me and look forward to hearing from you and learning your progress! Carol in New Mexico

nypara66 | @nypara66 | Apr 14, 2023

In reply to @anitarose "I was diagnosed just about a year ago with PV. Been on Hydrea since May. My..." + (show)

Hello I’m new to PV also. Recently diagnosed in January this year. Are you getting phlebotomies as well? You had t mentioned that. I have t reached any sort of normalcy yet. Hoping the Hydroxyurea stables it out. I’m taking 5 days on 2 off. My platelets stemmed to drop nicely but suddenly jumped back up so I was told to give it time. I had just recovered from a nasty COVID experience so I’m hoping that had something to do with it. Glad you are well!

Lori, Volunteer Mentor | @loribmt | Apr 13, 2023

In reply to @anitarose "I was diagnosed just about a year ago with PV. Been on Hydrea since May. My..." + (show)

Hi @anitarose, Welcome to Connect! Thank you for sharing your experience with PV. We often only hear the negative stories so it’s great that you’re doing pretty well on the Hydrea. It’s keeping your numbers even and that’s the goal.

Another positive is only needing bloodwork every 3 months. I felt liberated when my leash was lengthen to 3 month intervals. That meant my oncologist was seeing a predictable pattern and not anticipating anything out of the ordinary. So that’s a good indication that your meds are working.

Do you take Hydrea daily or every other day?

anitarose | @anitarose | Apr 13, 2023

In reply to @loribmt "Hello @itsmepeggysue, welcome to Connect. It’s a mixed welcome because I’m happy you found us, though..." + (show)

@loribmt

Hello @itsmepeggysue, welcome to Connect. It’s a mixed welcome because I’m happy you found us, though not happy that you have Polycythemia Vera. But you came to the right place. As you can see you’re not alone with this blood condition. There are several members in our support group for PV and they’re willing to share their experiences and offer support.

Since you’re new to the blood disorder, I thought I’d load you up on some reading material. PV is considered a blood cancer but it’s generally slow to develop and is managed with medications to impede its progression.

It’s actually in a classification of blood conditions referred to as Myeloproliferative disorders…where the bone marrow is producing too many of a particular blood product whether it’s red or white blood cells or platelets. In your case it’s red blood cells.
The Jak2 mutation (which happens randomly) is frequently the culprit behind PV. Though it can happen without the mutation. Jak2 tricks the marrow into over production.

I’ve posted a link to that information on Jak2 below, along with a few others on proliferative neoplasms and PV. Knowledge is power and it will give you a head start with potential questions to ask your hematologist
https://www.mayoclinic.org/departments-centers/myeloproliferative-disorders-group/ovc-20201578
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
https://www.verywellhealth.com/jak2-mutation-5217909
It’s encouraging that you found a better hematologist. It’s important to find someone you trust to give you the proper diagnosis and help you along with the right treatment plan. I know how frightening it can be when you receive an unexpected diagnosis like this. I had a very aggressive form of leukemia a few years ago. It clipped me off at the knees!! I’d done everything right in my life…but cancer, unfortunately, doesn’t care. It had other plans. But now, 4 years later I’m healthy, active and feel as though nothing ever happened. So please don’t fear the worst because often, the stories we tell ourselves are worse than reality.

In your case, with all the symptoms you’re having, starting the treatment will be a relief. Medication can often help bring the blood levels down to get you feeling healthy again.
Are you taking any blood thinners at this time?

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I was diagnosed just about a year ago with PV. Been on Hydrea since May. My RBC,WBC & platelets were all extremely high. Numbers are now within range and except for always being tired & needing meds to sleep I feel pretty good. Did test positive for JAK2. See my oncologist every 3 months for bloodwork.
So at 76 yrs actually just hope I continue the way I am.😊

itsmepeggysue | @itsmepeggysue | Apr 12, 2023

May I ask... what was everyone's Erythropoietin results? Mine was 5.. it's not "low" but more "low-normal"? Right? I'm still anxiously awaiting my JAK2 results.. it's only been 5 business days, but feels like forever.

cindy1209 | @cindy1209 | Apr 12, 2023

In reply to @sammy123 "Cindy1209----- Been busy the last few days- trying to get things organized- We had Chris's 3..." + (show)

Hi Sarah
It sounds like you had a wonderful Easter weekend with your family especially the grandchildren. I also had a busy weekend hosting Easter and spending time with family and especially my new grandson Jackson. I have been thinking about you and yes totally agree, I also worry too much. I have learned that positivity is your best medicine. My PV thus far has been treated with blood withdrawals and baby aspirin and I see my oologist in May. Jackson is bringing so much joy into our lives, and I love that they live across the street. I am sending you positive thoughts and wishes. I will be thinking about you on the 18th. Best wishes Cindy

sammy123 | @sammy123 | Apr 11, 2023

Cindy1209----- Been busy the last few days- trying to get things organized- We had Chris's 3 kids for easter weekend. They are great kids and enjoy their company. My initial appt with the oncologist isnt until next Tuesday (4/18) Seems like it is never going to happen. I have stopped reading about this and will wait for the Dr to tell me what I need to know. I worry way tooo much- How are you doing? Hope all is going well for you and that you are enjoying that baby. What joy the bring us. Thank you for being my sounding board. Sarah

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