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Letters From Cancerland: It’s Not Easy Being Green

By: April Nelson; Published: December 28, 2016 @ 1:24 pm | Comments Disabled

I have been on Pomalyst (pomalidomide), plus Kyprolis (carfilzomib) and dexa­meth­a­sone (Decadron), since this past July. It has been an inter­est­ing journey, to say the least.

Like Revlimid (lenalidomide) before it, Pomalyst showered me with lots of side effects, ranging from a bright red rash the first cycle, to peeling face and scalp, to extreme cold chills in the middle of the night, to hands shaking so violently that I could not take a picture and get a crisp image. While some of the side effects pulled back with later rounds, and then pulled further back when my oncologist cut my dosage to every other day, it has not been a pleasant or smooth ride.

But the bane of my Pomalyst regimen is not the side effects or the di­lem­ma of choosing between survival and quality of life. No, the bane is the Coumadin (warfarin), a standard blood thin­ner I now take to counteract the tendency of Pomalyst to thicken the blood and cause blood clots and strokes.

As an aside, I must share that I have odd platelet issues. We (“we” being my doctors and I) now all recognize that an early symptom of my multiple myeloma was spon­ta­ne­ous nosebleeds that would last 15, 25, 40 minutes, often leaving me looking like I was cast as an extra in a slasher film. I sometimes bruise spon­ta­ne­ously (as opposed to as a result of impact).

I have been tested for lots of odd clotting and blood disorders. Nothing. But as a result of this proclivity to bleed freely, my myeloma specialist wants me to take just enough Coumadin to hold my INR around 1.5.

INR, short for "international normalized ratio," is a standardized measure of how long it takes blood to clot. Someone who is healthy will have an INR between 0.8 and 1.2. Someone who has heart issues and needs their blood to be thinner than usual may have a target INR between 2.0 and 3.5.

In other words, the thinner a person's blood, the higher their INR. The lower the INR, the thicker the blood and the greater the risk of clotting. The trick is to get the right amount of Coumadin and the right thinness, but not too much, of blood.

Enter vitamin K.

Vitamin K suppresses Coumadin's ability to thin blood. Eat too much food high in vitamin K, and the INR drops and the blood gets sludgy. Work with superfine INR tolerances (1.5) and quirky blood like mine, and you have greatly multiplied your time, effort, and, yes, frustration in balancing all of this.

Vitamin K is found in trace amounts in many foods, but is found in high ranges in green leafy vegetables such as spinach, kale, and broccoli. It is found abundantly, albeit at lower levels, in lettuces, cabbages, cauliflower, and some fruits.

The FDA recommended daily adult dose of vitamin K is 90 micrograms (mcg). My personal physician, who is overseeing the Coumadin therapy, and I agreed that I should hold my vitamin K intake around 90 mcg.

Uh huh.

Five prunes have approximately 30 mcg of vitamin K in them. One and one-half cups of red leaf lettuce has 59 mcg. There you are for the day.

Oh, and did I mention that Coumadin interacts in wild and unpredictable ways – in terms of impacting the INR – with every known drug, including dexamethasone, Kyprolis, and Pomalyst? Yes, it does. For all I know, it also interacts with the phases of the moon, but I have not yet tested that theory.

I keep a vitamin K journal, much like a diabetic tracking carbs. I am often below the 90 mcg daily goal be­cause we have yet to establish an appropriate regimen of Coumadin that will keep me in the 1.5 INR range without causing me to bleed freely. As a result, I know the vitamin K content of foods some people never eat. I know that olive oil and canola oil are highest in vitamin K, staggering so in the case of olive oil, but that the vitamin K in a brined olive is negligible. I know that pumpkin pie has a whopping 8 mcg of vitamin K per 1/8th slice.

Cranberry sauce? Forget it.

And I miss broccoli. (Don’t even ask about its vitamin K content; it's off the charts.) The aforementioned prunes have become my go to for vitamin K. They travel well and I can always pop one or two in my mouth if I am having a very low vitamin K day.

I never took home ec in high school or any nutrition classes in college or later in life, so I am self-taught when it comes to eating right. I learned to eat better as I aged, adding more and more vegetables, and reducing fried foods and sugars. Now I have had to learn a whole new way of eating, not by counting carbs or calories, but vitamin K content. And by saying goodbye to some longtime green friends.

My local oncologist doesn’t understand why finding the balance between Coumadin and my diet is so dif­fi­cult. “Go ahead and eat all the broccoli you want, April,” he says, waving his hand expansively. “Just take some extra Coumadin if you do.”

My personal physician blanched when she heard his advice. “Not with your quirky platelets, April. Is he nuts?”

Pass the prunes.

April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [1].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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