Polycythemia Vera: Just been diagnosed

My husband is 67, diagnosed past December. He started hydroxy a few months ago and hasn’t had any side effects yet (I was very worried about side effects). Also 1 80mg aspirin daily. The one change is applying sunscreen regularly and more sun shirts.
Still having phlebotomy to get hematocrit down but the hydroxy seems to help keep it stable and has reduced platelets to normal levels(which was needed).
He is still very active although some fatigue. We hope once phlebotomy stopped fatigue will lessen or even go away.

I have a question. I take 2 baby aspirin a day and down to a phlebotomy every 3 months. I’m doing well with this, just some fatigue and itching comes and goes. Last visit my hematologist/ oncologist suggested I could go on hydroxyurea but I don’t want chemo drugs in my body if I don’t need them, but then I have read that this drug can slow the production of red blood cells in the bone marrow. Does anyone have any information on this.?If something can slow the disease, I don’t want to be foolish and not start on it. I am 74 and very active. I’ve tried to not read every little thing into this disease but would love to hear what your Drs have told you.

Hi @chella65 I found a relevant discussion for you with other members who have PV and diet questions.

Here’s the link: https://connect.mayoclinic.org/discussion/polycythemia-vera-and-nutritional-ketosis/

Do you know if you’re having any swelling of your spleen? That can often be a side effect of PV if you feel full soon after eating, experience bloating or discomfort in your upper right abdomen.

I will be 69 in July and was diagnosed with PV in April of 2021… Because my HCT was high, I was immediately put on hydroxyurea. I was already taking a baby aspirin and that was also recommended to continue taking.. I did not know what to expect and very concerned about taking a chemo pill.. When you hear the word chemotherapy, you think about potential side effects and how they could impact your life.. I was and still am very active despite having my dose of Hydroxyurea increased to 8500 mg per week.. So far, I have not experienced any known side effects from the HU and have been able to stay very active.. I don’t know how long it will last for me and I know some people have a very hard time tolerating HU.. It seems to be an individual thing… In my case, I have monthly blood tests and the results have been good now for over a year.. I’m not happy about taking these very potent pills, but so far they have been working for me… I hope this helps..

I have a question. I take 2 baby aspirin a day and down to a phlebotomy every 3 months. I’m doing well with this, just some fatigue and itching comes and goes. Last visit my hematologist/ oncologist suggested I could go on hydroxyurea but I don’t want chemo drugs in my body if I don’t need them, but then I have read that this drug can slow the production of red blood cells in the bone marrow. Does anyone have any information on this.?If something can slow the disease, I don’t want to be foolish and not start on it. I am 74 and very active. I’ve tried to not read every little thing into this disease but would love to hear what your Drs have told you.

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!

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...

I have a question. I take 2 baby aspirin a day and down to a phlebotomy every 3 months. I’m doing well with this, just some fatigue and itching comes and goes. Last visit my hematologist/ oncologist suggested I could go on hydroxyurea but I don’t want chemo drugs in my body if I don’t need them, but then I have read that this drug can slow the production of red blood cells in the bone marrow. Does anyone have any information on this.?If something can slow the disease, I don’t want to be foolish and not start on it. I am 74 and very active. I’ve tried to not read every little thing into this disease but would love to hear what your Drs have told you.