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a woman surrounded by healthy food, creating a barrier between her and unhealthy food

My PV Diet

When I was first diagnosed with polycythemia vera (PV) three years ago, one of my first questions was what should I be eating. I have always eaten healthy…well…at least ever since that first year of college and gaining that “freshman 10.” Most of my life, I have made sure my diet contained the four food groups and a good mix of all, just like I learned way back in elementary school.

My polycythemia vera diet considersations

Should I avoid foods with iron?

PV causes all my blood levels to be elevated which, in turn, causes a multitude of cardiac issues and symptoms like anemia. I learned that iron fuels the creation of red blood cells. Since excess red blood cells was what I was trying to avoid, my logic was I should avoid all foods that were high in iron.

I knew red meat had a lot of iron. Other than a steak every so often, I wasn’t a particularly big red meat eater, so that was easy to eliminate. However, I do get some strange looks when I go to a BBQ place and order a salad. I mean, I live in Texas after all.

I researched what other foods were high in iron, spending hours at the grocery store looking at the nutrition labels (and likely annoying my fellow shoppers) trying to find foods that weren’t iron-enriched or iron-fortified. It was actually more of a challenge than one would think. Even dark chocolate has iron.

About a year after diagnosis, I met with a nutritionist who explained the difference between animal (heme) and plant iron (non-heme). Plant iron, she explained, is not as easily absorbed into the system. I learned that Vitamin D combined with iron adversely impacts the absorption of iron. I also heard that Vitamin C increases the absorption of iron. With this newfound knowledge I pondered…so if I have oatmeal with fruit and milk, do they cancel each other out? Clearly, I was overthinking this.

Both my hematologist and PV specialist agreed, emphasizing that food iron consumption really doesn’t make that much of an impact on red blood cell production.

Should I try to decrease my platelets?

When I was first diagnosed my platelets were very high so I Googled “foods to lower your platelets.” Pomegranate was top on the list. Raw crushed garlic was also a top contender for platelet-reducing. I tried taking it, but no matter how I disguised it, it was horrible. I decided even if it dropped my counts dramatically, it wasn’t worth it.

Knowing that PV can cause cardiac events like stroke and heart attacks, I scrolled the Internet looking for foods that were heart-healthy. Berries, salmon, nuts, avocados, olive oil, oatmeal and vegetables were all high on the list. These became my diet mainstays. Especially nuts because I now eat a mixed nut concoction I created like a squirrel storing up food for the winter.

Should I try to shrink my enlarged spleen?

One of the symptoms of PV is an enlarged spleen. Mine, upon diagnosis, was large enough that it caused discomfort and early satiety (meaning I always felt full). At first, I consulted Dr. Google to see if there were any foods that would decrease the spleen size. Foods like apple cider vinegar, milk thistle and apple tree bark were some of the recommendations. I decided that those were a bit over the top so didn’t try any of these. Instead, I started eating smaller healthy food portions more frequently. Between doing that and medication, my spleen is back inside my rib cage where it belongs.

What foods should I avoid?

I already knew before researching what foods I should avoid: sugar, carbohydrates, fast and processed foods. Limit sugar? …Ugh…I admittedly did have a slight candy habit…okay maybe more than slight. I used to spend my workdays perusing the candy dishes spread out at various locations at the office. Since I now avoid sugar, my candy dish walk-bys have decreased significantly.

I absolutely love carbs: pasta, bread, pizza, rice, you name it. I decreased my intake and replaced most everything I do eat with whole-wheat options. I did try a few gluten-free breads… nope… nope… not for me.

I have never been a big processed or fast food fan – with the exception of Mcdonald’s french fries – so these were pretty easy to avoid. My kids, however, did not appreciate this new diet, as the frequent trips to Whataburger and Taco Bell decreased greatly.

Most literature and information that I gained from attending PV conferences and webinars recommended following a balanced Mediterranean diet. Since my heart-healthy diet was similar, I felt like I was on the right path, so I continued.

So, did my PV diet help?

So…did all this research and diet change really improve my blood levels and PV symptoms overall? Well… probably not, at least not directly. It’s hard to know for certain if this high-speed diet helps because I also take medication that lowers my blood counts. However, what it did provide was an overall improvement in my health. My cholesterol and blood pressure that were previously on the high side are now normalized. I have maintained a healthy weight.  Recent scans show that my spleen and liver are normal size and my heart and cardiovascular system have no issues. I feel great and am no longer anemic.

I plan to stick with my PV diet!

Editor’s note: It is best to check with a healthcare professional before starting any new diets.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ann Harper moderator
    4 weeks ago

    @dbwes62 I am studying to be a health coach and the Meditarian Diet is high on the list of recommended food choices as well as a vegan diet. The point is that adding lots of healthy vegetables is good for everything. Congratulations to you for sticking to this and staying strong. After I found out about the metastasis of my cancer I went on a vegan diet and my cancer has slowed down. It’s tough sometimes, but I plan to keep at it too – 3yrs and counting! I also avoid sugar!

  • hawkfan01
    1 month ago

    Good evening! I have the opposite problem in that I have a blood cancer and I struggle with low platelets. I read that pomegranate and beets are good for me to raise my platelets. In your article, you state that pomegranates are for lowering platelets. So I googled it again and it most definitely states that pomegranates are good to increase platelets. The article also states that just the blood colors of both foods signal the benefit of blood composition. My platelets have increased since my intake of both foods. I feel this has helped.

  • Deb Wesloh moderator author
    1 month ago

    Interesting…I think it depends on what source you use. I checked again, and the one I read says pomegranates contain polyphenols that have an anti-platelet effect. But…this isn’t a scientific article so who knows how true it really is. I have seen my platelets decrease, but as I pointed out in my story, there’s really no if my diet is doing anything for my blood levels.
    Glad your diet is working for you though. Best wishes (Deb Wesloh, BC moderator)

  • Yolanda Brunson-Sarrabo moderator
    1 month ago

    Hi, @hawkfan01 welcome to the network. I’m happy these foods have worked well for you. As I tell many people with blood cancer, and that is we’re all so very different- what works for one may or may not work for another. Who knows why some foods trigger good or bad results in our make-u? Keep doing what you’re doing and continue being mindful how diet plays a role and being the best of healthier.

  • Deb Wesloh moderator author
    1 month ago

    Thanks. Yes, there is definitely a lot of conflicting guidance out there. I think most of it goes back to what makes you feel the best. So far my diet has worked well for me but I know my health could change at any time so I try to be flexible.
    Enjoying your winter up in the frigid north?

  • Daniel Malito moderator
    1 month ago

    @dbwes62 I’m not sure if I had to give up BBQ for cancer if I could make that choice. They’d have to pull me away from the ribs like I was Fred Flintstone with the huge rack attached to my car. I always say if something works, do it, so if this diet helps at all then chow down. Chow up? Whatever you know what I mean. 🙂 Keep on keepin’ on, DPM

  • Yolanda Brunson-Sarrabo moderator
    1 month ago

    You are a hoot Dan! We love you 🙂

  • Deb Wesloh moderator author
    1 month ago

    Thanks for your response. Your comments are too funny!

  • Ramae Hamrin moderator
    1 month ago

    Hi Deb! Since the day I was diagnosed with multiple myeloma, I have wondered what to eat. I went to an LLS nutrition conference, visited with an integrative medicine specialist at Mayo, and have consulted Dr. Google hundreds of times. First I ate red meat, then I didn’t. I didn’t eat oatmeal, now I do. The specialist at Mayo suggested a mediterranean diet, and that’s I have found makes me feel the best — with the gluten-free bread, raw garlic, milk thistle, and green powders. It’s a little trial and error and trusting my body to let me know what is and isn’t working. I’m so happy for you that you saw an improvement in your health! Way to go!!

  • Deb Wesloh moderator author
    1 month ago

    Thanks. Yes, there is definitely a lot of conflicting guidance out there. I think most of it goes back to what makes you feel the best. So far my diet has worked well for me but I know my health could change at any time so I try to be flexible.
    Enjoying your winter up in the frigid north?

  • Dan122
    1 month ago

    I don’t have PV but I follow the same idea, what can I do to live longer with my follicular lymphoma? After reading some books and hundreds of papers, I reached a simple list:
    Cut – sugar, processed “white’ flour, junk food.
    Add – garlic, onion, curcumim, brocolis.
    I try to eat whole vegies and lots of fruits.
    I’m not sure if that will work but at least I will be doing the most I could. There are people who overcame lymphoma with diet. But there are also lots of quackery in Dr. Google.
    Daniel Carvalho

  • Deb Wesloh moderator author
    1 month ago

    Yes, there is a lot of crazy diets/food options out there…and I admittedly have tried a few of them. I really believe that a healthy diet, although it may not “cure” what aliment you have, can definitely improve how you feel and your overall health.

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