Letters From Cancerland: It’s Not Easy Being Green
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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi April,
I have been taking Coumadin for 20 years after having a valve replacement. You may be doing this backwards. One has to establish a regular diet, it may even include vitamin K or even alcohol. The variable becomes your daily dose of Coumadin, which means weekly INR tests.
Keeping at exactly 1.5 INR is impossible. Take a range, say 1.2 to 2.0, and adjust your daily Coumadin intake and keep track of it. Over time you can stretch the testing to every 2 weeks or even a month.
If you try 2 variables, diet and Coumadin, you will go crazy.
Mike K.
Interesting to hear that you had a lot of nose bleeds prior to being diagnosed with multiple myeloma. I had the same symptom, but no one made the connection.
Wow ... and I complain about irritable bowel syndrome because of Revlimid. I will count myself fortunate not to have to deal with all that you must on a daily basis. You are quite the trooper!
Hi April.
I'm with Michael on this one.
I have patients on Coumadin and set a range and a dose that addresses what they eat regularly. I ask them to avoid EXCESSES in vitamin K-rich foods but not to avoid regular usage of what they enjoy.
Consistency is king.
As an aside, there are now newer meds that are not so food sensitive. My mom just started one of them after a small stroke related to atrial fibrillation (regular dose based on weight, no labs or diet restrictions needed). You might ask your team about them.
Glad to see you writing again. I missed your column.
April, nice to hear from you again. Your detailed info really helped me regarding Kyprolis. So I thank you for that. My oncologist is also a hematologist. So for the deep vein thrombosis (DVT) prevention issues, I had been on warfarin, but I now use a low molecular weight heparin, which is not vitamin K sensitive, and gives a more stable concentration in the blood over time. The drawback is a needle everyday. However, if one is a greens lover like myself, it frees one of the worry of diet / blood thinner conflict.
Take care and thanks again for your insights.
Thanks for the interesting column, April. I am sorry to hear that you have to take stronger drugs such as coumadin along with the Pomalyst. I hope that you can stay in the right balance with the vitamin K, a factor for clotting! How often do you get your INR tested, and is it done at a lab?
I took a low dose aspirin with Revlimid, and still am taking that even though I have been off of that drug since the beginning of September. The Revlimid and the Pomalyst are in the same family of drugs, immunomodulatory agents, and can cause clotting, and even myeloma itself can cause clotting or embolisms. It's good that you are being so careful about this!
I also missed your columns and am glad you're writing again for the Beacon! Happy New Year!
Greetings April
I am glad that you are well enough and had the time to write again, as I sorely missed your column. I looked for it almost daily, and wondered how you were doing, so thank you for the update.
Your account of your Coumadin journey generated helpful comments, as I am at a crossroad where I anticipate it may be prescribed for me again. I too love broccoli and the darkest kale, so it's good to know that there are options that aren't sensitive to vitamin K! I would prefer the needle to giving those up, or even limiting them!
Many thanks to you, April, and to all who take the time to write regular columns and who write comments.
Hi April,
It's good to see you writing again. I missed your columns. But I'm sorry to hear about the tricky balancing act you need to perform. It sounds pretty difficult and annoying.
Hang in there!
Mike
Hi April,
Thanks for all the informative detail. I too am currently on Pomalyst, after years and years of Revlimid (2010-2015) then Kyprolis (2015-2016), and now on my 2nd month of Pomalyst. After only 2 or 3 Pomalyst pills, I too had a crazy scalp rash (November), immediately began Benadryl and stopped Pomalyst for a day or so. I take Pomalyst with Benadryl and low-dose aspirin and so far so good. I can feel a slight "heat", like a mild sunburn around my hair line, and itchy on my scalp, but nothing like you mention! Hope this clears up for you fast!
I am currently alternating 3 mg with 4 mg, as I don't like starting meds at the highest dose. We'll see what happens with my blood work in a few weeks.
I too haven't heard of patients taking Revlimid and Pomalyst at the same time, but then again, I've never done a "triplet". If Pomalyst doesn't do the trick for me, maybe Ninlaro or Velcade, as I haven't done either of those yet.
Also, I too had crazy waterfall nosebleeds prior to diagnosis in 2009. Are you IgA multiple myeloma? I am.
And thank you for all the detail re: Coumadin, as my hubby has been on it since 2008, for blood clots.
Take care, Happy New Year, and thank you for a great column!
April - Very interesting and informative column. I am encouraged to explore more about vitamin K and its interaction with the various blood thinning medications. My husband spent two years on subcutaneous Lovenox (enoxaparin) before taking Eliquis (apixaban), which does not appear to be affected by vitamin K.
For the last 2 months I have been waiting for your column. Glad to see your column, but sorry about the side effects your are experiencing. Personally, I hate the side effects, but what's a person going to do? Have a Happy New Year, and let's hope that next year is better for all of us.
How like a winter hath my absence been
From thee, the pleasure of the fleeting year!
What freezings have I felt, what dark days seen!
What old December's bareness everywhere!
(From Sonnet 97, Shakespeare)
Thank you for everyone who welcomed me back. I have had a long and difficult autumn, not all due to multiple myeloma, and the words would not come. Here's hoping 2017 loosens my pen.
For everyone who suggested alternatives to Coumadin, every single one suggested has been discussed and received a vigorous thumbs down from my local oncologist, my myeloma specialist, and my personal physician Pat due to my "quirky platelets" (which is how Pat refers to them when she is in a good mood; she calls them my "weird platelets" when we are staring at test results yet again). My myeloma specialist was pretty blunt about my having to be on a thinner that can be micromanaged, as I bleed quickly and profusely. The medical very real fear is that I could bleed out. Coumadin has the benefit of having flexible dosages – dial it up, dial it down (we have been slowly dialing it up, keeping an eye on increased bruising and bloody noses as our canaries in the mineshaft). Nancy S. takes low-dose aspirin; I was put on low-dose aspirin when I was Revlimid, had a major bleeding episode within a week, with veins throughout my torso breaking, and now every single medical file says in large red letter "NO ASPIRIN."
Michael K. correctly pointed out that 1.5 is an impossible target; my target range is 1.5 to 2.0. We cannot get me to 1.5 with any consistency, as I persistently come in below that. 2.0 may be impossible without the aforementioned bleeding and bruising.
Michael is also right about starting with the diet and then add the Coumadin. My diet was pretty consistent, replete with green leafy vegetables, prior to Coumadin, and my baseline INR was in fact 1.5. It started falling immediately.
For those of you who like to scale mountains, be aware that there are some studies connecting high altitude and Coumadin interference. During a summer vacation in Colorado at high altitudes, my INR guttered at 1.1 and did not rise again until we were below 5000 feet and on our way back to Ohio.
And no, I do not mountain climb. But we were above 5000 feet, and mostly above 8000 feet, for about 10 days.
Dear April, what a drag. Your writing is full of rich detail, so I can picture the scalp rash, the redness and all of it. I am blessed that I don't have to take Coumadin. As a nurse, I know the management is tricky. That being said, there is a learning curve, and you have a team advocating for your treatment. Hang in there, adaptation does happen. And keep writing, we enjoy it.
Maureen
Hi April,
I'm sorry you are dealing with these side effects and complicated treatment. I've been on blood thinners a few times during my disease. I have used Fragmin (dalteparin) injections.
I also had nose bleeds when I was younger. Never thought to put it together. Interesting.
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