caret icon Back to all discussions


I am newly diagnosed and my HCT and hemoglobin numbers are very high. I have started phlebotomies but my numbers are going down slowly. I need some help with what to and not to eat. Can I never drink again? Eat steak occasionally? Desserts? I normally eat healthy but also like to enjoy my life. I am so scared and don’t know what is right and realistic.

  1. Sorry I have polycythemia Vera.

    1. Welcome to this community, and sorry to hear about your diagnosis. You have some very reasonable and valid points. You should air out these exact concerns and have your doctor give the yeah and nay to your specific situation.
      I was diagnosed with multiple myeloma and I did ask my doctor if I could drink occasionally again...the reply was in moderation a glass of wine. If I went past that 1 glass for 2 my body definitely was the ruler of "no, just one". You begin to learn real quick what is good for your body and what is not when it's now compromised. I think by being clear on what you want to do, allows for some transparency on whether the requests are history or still possible with limitations. I know it feels scary right now, but just build a relationship with your team to ask those normal questions, and hopefully, you'll get those replies that put you more at ease in getting through this. Wishing you the very best!

      1. Thank you

        1. I have been battling several cancers since 2013 including blood cancer. And understand it is not easy to suddenly learn you have some form of this disease.

          Just understand that being scared, confused and feeling lost just means you are normal and it happens to all of us. As Yolanda pointed out your best source of information is your MD. I would add that over time you will find that the oncology nurses are really great sources of information and often can give you a few hints on life style.

          You are on a new path and it takes some time to figure out what direction is best when it comes to diet and hydration. For me the latter was quite important and I needed to increase my water intake. I also found when I was on various medications some things did not agree with me but over time I was able to enjoy (in moderation) a few things like chocolate and a more.

          One piece of advice that helped me early on and still does is reach out to others here. Being in touch with folks facing similar challenges has a way of calming fears and tension. Just know there are a lot of people here who will listen and offer support . Dennis ( TEAM)

          Please read our rules before posting.