Polycythemia Vera: Just been diagnosed

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

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

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

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

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?

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!

I was diagnosed with PV in February 2021. My hematologist goes by my hemoglobin number, which he wants to maintain at under 15.0. I started off at 20.0 and had to have four phlebotomies in four weeks, then to one per month. Now im at one every 3-4 months. I also take one 81 mg aspirin tablet per day . My hematologist also wants me to drink black or green tea with my meals, as he showed me it helps to regulate my iron absorption from the meal, which he's trying to keep as low as possible. Im a 4.0-level tennis player so my energy level is extremely important to me; I also walk on a regular basis. So far so good, plus im planning to do my first zoom meeting in a blood cancers support group this coming Thursday. Im a 59 year old male, no smoking, very light drinker and do my very best to keep my emotions in check. Fortunately my family is all very supportive. I am open to any feedback since this is my first time on any type of online forum for Polycythemia Vera, or any other blood cancer for that matter