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Weight for It…

So I’ve always maintained a petite statute for a good part of my life. However, during my time with multiple myeloma, let’s just say I’ve seen things change a bit. My weight has dipped up and down for the past 5 years thanks to Revlimid, Dexamethasone, and Kyprolis. Whether noticing the beaver cheeks or other slight annoyances, this issue of weight going up and down has been interesting.

Cancer-related dental issues lead to weight loss

I had a few root canals a few years back (long story thanks to myeloma) and wouldn’t you guess it I had the worst side effect. I lost about 10-15 pounds and that wasn’t great as I was already small. Well, due to the side effect of the procedure and so forth, I was hit with lockjaw. I tell you, if it’s not one thing, it’s another!! Anyway, due to the inflammation or whatever made my jaw lock. I could not open wide enough to eat. I was only really eating liquids. It was absolutely ridiculous and all while in treatment. My diet consisted of creamy mashed potatoes, smoothies, water, and I can’t even recall what else. But I know the Popeyes mashed potatoes were a big treat for me, as it was my version of steak. This went on for about 4 weeks until I finally regained movement.

Steroids lead to weight gain

Then with the steroids that were part of my unwanted cocktail, my weight brought me to numbers not seen before. Now, you may say, “Well, at least you were gaining weight, as so many people lose weight with their meds.” I guess the thought of more meat on the bones seems better for tolerating treatment. Well, I’m here to say that is a myth and changes to weight up or down should not be taken lightly.

Nutritionist, where are you?

I’ve found that many questions on my walk with multiple myeloma consisted of me asking the question, and if the answer was not sufficient, then I would try to find the answer by other means. Anyone who knows me well, knows that I don’t like condescending folks, and I don’t like sass!

I recall early on seeking a nutritionist to combine with my treatment. I gathered that those I spoke with didn’t see this as an issue so they thought I didn’t need a nutritionist (Insert side-eye). I would ask and ask until I finally reached out to the nutritionist on my own, and I will tell you that the experience was not all that I thought it would be.

I was given a few sheets to read on getting vit C, folic acid… you know all those things generally needed for the body. I didn’t find the answers totally in tune with my situation. My weight was skyrocketing! I didn’t want to hear, “Oh it’s the medication.” I wanted to say, “Um, okay but when do we become concerned”? As I continue to say in my posts, you really have to know when something is not right with your health, even more so when you add in myeloma or any health condition.

Our healthcare team should talk more about weight changes

If you haven’t thought much about weight and myeloma, well, it’s something we should consider talking about during our lengthy conversations with our oncologist. These are the types of questions I ask.

Dr: I suggest your regimen to include drug X, which is a steroid, so expect weight gain.

Patient: Um okay…

Patient: Well, how much weight are we looking at? What are my options if my weight increases? Does this possibly lead me toward problems with other diseases, like cardiovascular disease?

Be your own advocate
Stick with it and demand direction, whether asking for a social worker or dietician to direct you to some information. If all else fails, reaching out and having a straight conversation with your oncologist or family practitioner for guidance about a weight management program. As for the conversation with your doctor, you can also ask if your dosage can be adjusted if your weight changes are becoming a problem.

As for myself, I have changed my diet slightly, and have built-in a consistent workout routine. As I do have after-effects of residual meds in my system and a slower metabolism, this is not a quick fix, but it’s fixable. My routine is limiting the number of processed foods. I’ve definitely made visible food changes and just try to be mindful.

The time to fight is now, with integrity, grace, hope, and a smile….when you feel like it

Editor’s Note: We suggest consulting with a healthcare professional before starting any new diets or exercise regimens.

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


  • Ann Harper moderator
    4 days ago

    @yolandabrunson-sarrabo My cancer is different from yours, but my doctor gave me a 24% chance of still being here in 5 years as my cancer is aggressive. When I found out it had metastasized to my lungs and my doctor said there was nothing to do at this time, I started researching for myself. I stumbled across an organic, whole food, plant based diet. It’s been 5 years and I’m still here and my doctor still doesn’t think I need treatment. It would be so nice for the doctors to give us all the info we need instead of saying, “diet doesn’t help your type of cancer”. Well in my opinion is it does – even if only to make your body strong for treatment. Ok – rant over. I’m glad you were able to find the info you needed – good luck with everything.

  • Yolanda Brunson-Sarrabo moderator author
    4 days ago

    @annharper Thank you Ann, yes, we must do our due diligence to see the full range of options, and what works best for us.

  • Ann Harper moderator
    4 days ago

    So very true!

  • Daniel Malito moderator
    1 week ago

    @yolandabrunson-sarrabo My weight has gone up and down so many times I’m legally classified as a hot air balloon for insurance purposes. I even have the stripes on my balloon (aka my torso) to prove it. Steroids made sure of that with it’s super fast weight change and stretch marks. Not only that but my belly became so distended that people thought I was pregnant with twins and it also gave me spinal compression fractures just from pulling everything forward so violently. Nothing wrecks a body faster than rapid weight gain and loss – just think of what it does to a piece of taffy as it stretches and contracts. It’s not all bad news though – as long as you monitor it and keep the steroids and other meds to their absolute minimum possible you can keep it to a tolerable level hopefully. I feel your pain, though. You’re not alone in that my perpetual ray of sunshine. 🙂 Keep on keepin’ on, DPM

  • Yolanda Brunson-Sarrabo moderator author
    1 week ago

    Yes, the woes of it all. I guess this is a global sentiment. Best!

  • Ramae Hamrin moderator
    1 week ago

    @yolandabrunson-sarrabo I’m surprised this topic isn’t written about more. Weight seems to really fluctuate with all the different blood cancer meds and procedures, like transplants. I never did gain a lot of weight on steroids, but I sure lost a ton during my transplant. My doctors don’t want me to lose weight, but eating healthy and exercising hasn’t caused me to gain back very much. I think limiting processed foods and having a consistent workout routine is an excellent idea, and I wish you the very best!

  • Yolanda Brunson-Sarrabo moderator author
    1 week ago

    I agree this is something many face in silence, as we see changes but we don’t put two and two together. This weight topic deserves the right cocktail for all of us, unfortunately, it hasn’t been developed yet; thus we “wait” in “weight”!. Wishing you the very best!

  • Susan Gonsalves moderator
    2 weeks ago

    @yolandabrunson-sarrabo Thank you for writing about this topic. The moment I began taking TKIs for my CML (that’s a lot of acronyms) my weight started drastically climbing year after year. At first, docs said not to worry about it as I was battling leukemia and needed to get that under control but as time went on, I went to nutritionists and a doctor specializing in weight management. Not much luck there because can’t stop taking the leukemia drug. So, stuck with this new reality although I continue to eat as I always did and try to get exercise in (in the form of physical therapy at the moment). Can only do what you can do, right? Still, it’s frustrating.

  • Yolanda Brunson-Sarrabo moderator author
    1 week ago

    Yes, Susan, we can only do what we can do. We’re all so different in how we cope in getting and feeling better. Sometimes, its not the people we seek specializing in issues such as this, but more what is the best route for each individual that is key. It can be frustrating because there are no simple answers, but a lot of trial and error. Wishing you the very best!

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