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Nutrition and Eating

Nutrition and Eating

I was diagnosed on a Tuesday and started chemotherapy on Wednesday, the very next day. We asked the doctor what I should eat and he said I should eat lots of protein and just about anything else I wanted, that if I had an appetite and could put on pounds that this was a good sign.  That sounded great to me.  However, with my myeloma, my kidneys were damaged and the kidney doctor I saw on Thursday said I needed to go on a strict renal diet, which means eating food that is very low in potassium and phosphorus and I shouldn’t have too much protein. Confusing and contradictory, right?

It gets more confusing. I had been sick and progressively feeling worse daily for about three months leading up to my diagnosis. I had given up eating meat a few months before I started feeling fatigued and weak. I had attributed my fatigue to not getting enough protein in my diet. I had upped my intake of nuts and beans to increase protein in my diet. After seeing the kidney doctor and in researching renal (kidney) diets, we learned that beans and nuts were things I needed to avoid.  So I figured I would eat fish as my protein source, but my oncologist suggested I minimize fish since my immune system was compromised and fish could be risky. A renal diet is also low dairy, so that ruled out cheese as my protein source.

So, what can I eat?

Add to the nutritional challenge, that typically a myeloma patient gets a massive dose of steroids as part of their treatment and that gives one a huge appetite.  Within six months of being diagnosed, I was eating hamburgers and had gained nearly 30 pounds. Both my primary oncologist and myeloma specialist acknowledged that medical schools don’t really spend a lot of effort educating future oncologists on eating.

My kidney doctor suggested we look at DaVita’s website for foods and recipes that would be renal diet friendly.  We also went to a couple of nutritionists for help.  The challenge there was that for nutritionists failing kidneys combined with cancer weren’t the normal characteristics of their patients. Plus, for me, insurance didn’t cover the nutritionist visits, which seems crazy.

Getting the support I needed

As time went by, we sort of figured things out. LiveStrong was a huge help, offering diet and fitness tips for cancer patients. DaVita proved to be quite valuable. Very recently I learned that the Leukemia and Lymphoma Society offers free one on one phone or email consultations with registered dieticians with expertise in oncology nutrition. You can go to LLS.org for more information or call 877-467-1936 X 101 to schedule an appointment.  The Cancer Support Community also offers nutrition classes and usually have a library with some good resources on nutrition.

For me, as my myeloma improved, so did my kidneys and I was able to pivot away a little bit from the renal diet, although my kidney doctor last month suggested I don’t pivot too far away.  I still undergo treatment and take steroids, but we have lowered the dose and I’ve been able to drop those freshmen 30.

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

  • Cherie Rineker moderator
    4 months ago

    Wow Matt, that was quite a journey. I am so lucky that my kidneys never gave me a hard time, but my bones sure have. I also must have been the only person who lost weight on Dex. I remember the nurse telling me that I was going to gain weight in “all kinds of places”. As far as what to eat, I think for a lot of cancer patients the answer is : Whatever you can keep down. nausea and vomiting have always been my first two symptoms, so eating, to this day, is a challenge. Cherie XO

  • Yolanda Brunson-Sarrabo moderator
    11 months ago

    Matt Matt Matt @mattg. I can so relate, nutrition tends to be a back thought when dealing with myeloma. Speaking for myself, I had to request a lot of the “other” doctors, or services that get missed, this includes nutrition. I had to ask my team for a nutritionist, and even then it wasn’t a strong service, as i had to put bits and pieces together. It’s a trial and error in what to eat and what your stomach says NOPE. I’m glad everything its now coming together for you. Best!

  • Cherie Rineker moderator
    4 months ago

    Hi Yolanda, glad you slowly put the pieces together. I went into this an expert on what to eat and what not to. I worked at several weight loss places, had many foods and their protein, carb, fat contents memorized, stayed away from unhealthy foods and believed that a vegetarian alkaline based diet was best for the body. Once I went to chemo all went out the window because I could not stand the foods I had once loved. Steak became my favorite food for awhile, as was ice cream and cheese cake. I can’t stand most foods anymore, including the ones I mentioned. These days I live off sandwiches, cereal, potatoes and a protein shake with all kinds of greens in it. Though I had the best intentions to live super healthy, my taste buds and stomach make that very difficult indeed. Cherie XO

  • Yolanda Brunson-Sarrabo moderator
    4 months ago

    Hi @cherierineker -yep, sometimes the stomach wins in the end game. I’m happy you found some kind of peace in foods and shakes that work for you presently.

  • ScottChristiansen moderator
    11 months ago

    Matt, really enjoyed reading this…not just for so clearly outlining and laying out the challenges of maximizing nutrition while contending with a diagnosis whose impacts are often multi-faceted and over determined; but also for the solution-focused suggestions. Thanks!

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