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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)Comment receiving replies
First time joining a group here used mayo for research but now ...Im recently placed in a 6 month observation for Polycythemia Vera. We have excluded other factors, I came back negative for the Gene however my hematologist says 20% of results for negative can be false. I've had elevated RBC and hematocrit for several years now. I noticed I didn't feel well most days when I turned 60 and have been talking with doctors ever since about not feeling myself. Recently I was referred to a hematologist/oncologist and she did her process of illumination tests. I have many of the symptoms, and they come and go in the range of severity. I'm taking a slew of supplements to help and some have been good. I am in my 3rd month of the 6 month observation period, just went to the lab, and again both are elevated. I will go back in 3 more months and if still elevated she advised she will confirm the diagnosis and decide the course of treatment. I wonder if the other changes in health Im experiencing is attributed to this...
Replies to "First time joining a group here used mayo for research but now ...Im recently placed in..."
@chella65 Hello, sorry you have not gotten and definitive answers yet. I can say this. I am a soon to be 57 year old female who was diagnosed in Jan with PV. I just started menopause about a year and a half ago. Sooo many symptoms of this disease are identical to the change of life. Tingling, especially in hands and feet, hotness, flush face, headaches, fatigue, lack of concentration(AKA Brain fog)muscle/body aches, itchy skin, ALL are listed under both PV and Menopause. I know you are a bit older than me but they say this can last for up to 15 years or so? I am finding it difficult to differentiate which is which, but in the end I just have to pay attention and make sure that I get my labs done on schedule. I currently get Phlebotomies about every 6 weeks and take Hydroxyurea 500 mg 3X a week. It took until this month, 6 months later to get to dosage right. I am hoping my numbers stay stable. Hematocrit, hemoglobin, red cells and platelets were all high. Everything is acceptable currently. Fingers crossed for you and I both! Keep us posted.
I've got a question, doing some research and found some advice about food. I have been having problems with digestion and bloating but I eat well, mainly salad with a side of protein. I just found recommendations not to eat certain veggies, and green leafy is one of those. Does anyone know or have an accepted menu of food? I'm now wondering if all my healthy eating has been irritating my stomach and that's why I feel uncomfortable after I have dinner and have digestion problems. I really make a great salad with alot of fresh things in it and I eat salad almost every night oops!
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Welcome to Connect, @chella65. As you can see you’re not alone with your new diagnosis of PV. You’ve landed in the right support group. There are a number of other members who also have Polycythemia vera, many with the mutated JAK2 gene. Sometimes it can be a little challenging to get a definitive diagnosis but it sounds as though you have a good hematologist oncologist on your team now and doing regular followup appts.
There can be a number of symptoms with PV and because is generally slow to develop it can be difficult to put your finger on any one symptom. Often the first sign is itching after a bath or shower, some patients feel tired, breathless, achy, etc.
Looking through the conversations in the forum, if there are particular replies with whom you’d like to respond, just click the blue Reply button and a box will open where you can type your message. That person will be notified that there’s been a reply. Also, if you’d like to tag someone so they get a notification, simply type in the person’s @name so they get the message.
Do you have any specific symptoms you’d like to share with us? Has your doctor mentioned the need for a phlebotomy to reduced the amount of red blood in your body which will lower your numbers?