Watch the replay of our FBLIVE event with Dr. Urvi A. Shah, hematologist and oncologist, as she answers your crucial questions about nutrition, myeloma, and overall wellness. Learn practical tips for managing treatment side effects, dietary recommendations, and the latest research insights to support your myeloma journey. 

Hi everyone, welcome to... Hi everyone, I am Dr. Urvi Shah and welcome to the International Myeloma Foundation's Facebook page for Myeloma Action Month. I look forward to chatting with you over the next 30 minutes, answering questions about nutrition, myeloma, or anything that you would like to discuss on these topics. Every March, we are due to champion Myeloma Action Month to raise awareness about this cancer. I think a lot of people know about leukemia, lymphoma, but somehow myeloma doesn't get known as much, and even though it is the second most common cancer. Whether you're a patient, a care partner, or simply curious about myeloma and how nutrition can play a role in your life, I'm here to answer questions. Hi Stephanie, it's great to see you, and I see Nicola you joined as well. Really good to see you after a while. Please reach out or add in questions. Hi Lynn, it's good to see you too.

I was thinking maybe a little bit about me. I'm a hematologist and oncologist on the myeloma service at Memorial Sloan Kettering. Many of you may already know this, but my research interest is how to modify the risk factors, such as diet, the microbiome, metabolic disorders, like obesity, diabetes, affect cancer risk, especially myeloma and what we can do to maybe reduce our risk and improve our outcomes as we get faced with such diagnoses. I myself have been a cancer survivor, had Hodgkin's lymphoma about eight years ago, almost nine now. So I have experienced the other side and understand how it can be so a stressful period for patients. Hi Joseph. Good to see you. Hi Marge, Daria, Donna. I love all those emojis. Keep them coming. So I see Sally asked a question about "Can dex or myeloma cause your teeth to fall out?"

I think that's a good question. As we age, partly that too can affect teeth, but even myeloma as it affects bone density or lytic lesions, if it directly affects where the teeth are, that may be something that you may see. Other things that may affect tooth health is like when we do these bone strengtheners, they may also affect and have a very rare side effect, called osteonecrosis of the jaw. So we want people to get their teeth checked by a dentist before we do these bone strengtheners. Osteopenia, osteoporosis can affect teeth health and then also receding gums, or things like that, which could be affected by poor diet or nutrition. So I see another question about steroid related weight gain from Jase, and I think that's also very important. Actually, we are researching that and we looked at patients with newly diagnosed myeloma who got their induction chemotherapy and we tried to see how many patients actually lose weight during induction chemotherapy, how many gain weight, and how many maintain their weight to understand how maybe steroids and the treatment is affecting patients. And we saw, actually, 70% of patients actually maintain their weight and 15% lose weight, about more than 5% of their weight, and 15% actually gain weight, more than 5%. And so it's not like what most people think, like with cancer, you're always gonna lose weight.

Actually the steroids probably are causing some of that weight gain, or maybe associated with it. And of course steroid-induced insulin resistance, diabetes, weight gain are things we want to try to avoid, and things like dietary changes that can reduce insulin resistance, which we saw in our pilot study, the Nutrivention trial are things that can be possible when you're eating fiber rich foods. I see Donna, you're joining from Toronto. That's great. I see a question from Lynn, asking best practices for prepping for stem cell transplant, and if you're asking around the lifestyle changes, or maybe other things, but I think that with a stem cell transplant, think about it as a period that's going to be a little harsher or harder, and we wanna be in our best shape or fittest to get to that position, and then as we get through it, we can again work on recovery. So I think it's important to get the proper nutrition if you have the energy to maybe walk and build stamina, or exercise, things like that. So you are quite fit when you go into a transplant because there is going to be some deconditioning where you're not gonna feel good on some days and really want to possibly just whatever you can eat, or keep down, or maybe you're not even wanting to get out of bed. Holly, I see you're asking a question about running the study with Plantable.

So our pilot Nutrivention trial was with Plantable. Our current studies are with other meal companies, but the current ones are with Daily Harvest, and we are running quite a few studies. There's NUtrivention two, three, four going on, and Nutrivention five is going to hopefully open later this year. Want to share that exciting news that we got funding from the Leukemia Lymphoma Society to open a study in newly diagnosed myeloma patients, and this will be designed in a little different way that we're hoping to have it decentralized so patients across the US can take part. Still working out the details, and hopefully, it will open to us the second half of the year and it will be for patients who are newly diagnosed around that time. So it may not be for all patients, but we're trying to basically understand its effects on quality of life, insulin resistance, how steroids affect it, as well as response. I see Kathleen asking, "Should you not be taking any medications if you're on remission?" So for myeloma, we know that patients who take maintenance therapy, like lenalidomide, have longer time in remission. So I wouldn't say that we should not take any medication.

I think on maintenance therapy, we should be thinking about doing the maintenance, but if your doctor decides, at a certain point, that you had enough years and you are in what we call an MRD negativity, or sustained MRD negative, they may say okay, it's possible for you to come off it and then let's monitor. So I would discuss it with your doctor, but as of this time, I would recommend doing maintenance, and what we saw in our study that we published a few years ago, looking at diet microbiome with maintenance therapy, those that actually had healthier diets and a healthier microbiome were more likely to be in remission on the maintenance therapy. So I think it can go hand in hand. Cindy's asking best way to get enough protein, "Find it very difficult since taste has changed with treatment." And I think that's a very good question. I think if you just look at, forget whether it's cancer or not, but if you look at the general US population, we are getting about double the protein on average than what the RDA requires. The recommended daily allowance for protein, or recommended daily intake is about 0.8 grams per kilo of body weight. I think that when somebody has cancer, or they are older, they may need a little higher, maybe one gram per kilo or 1.2 grams per kilo.

So if you think about that and calculate it based on your rate, if somebody's 60 kilos, that's about 60 grams of protein, if you're having three meals a day, maybe split it up into 20 grams per meal. It's possible, even a cup of beans, which we don't expect, or think, actually has 15 grams of protein. Whole grains have protein. Almost every food is a building block, has carbs, fat and protein. Of course some foods have much less compared to others. But what I'm saying is that if you think about like eating more wholesome foods, you're going to probably meet the protein in small amounts, even things like oatmeal, a cup of that may have about five to six grams of protein. So when you add it all up in a day, nuts, seeds, things like that. And of course, there are animal sources of protein that everybody's aware of, but I'm trying to highlight also other sources that people don't think about. Silk and tofu, or making a smoothie which you can blend in, that can increase also your protein intake. I see Cindy's asking, "Can you talk about fruit and vegetable extracts?

I see them added to protein shakes and other foods. Do they provide any benefits?" I'm not so sure Cindy, what you mean by the extracts, but in general, protein shakes or things, because when a food has very high protein, it's usually not as palatable, so they will add sugar or something to make it taste good. And so many high protein bars also end up being high in sugar. So you really have to be conscious about that, or even protein powders. and I think that if it's truly just the extract, like a concentrate of a fruit or a vegetable, that could be good. I don't think that's a problem. It's just a question of what exactly they have in it. "How do you get sufficient daily protein and still follow a plant-based diet? If you need to consume animal protein, what do you recommend?" So David's asking that question. I think, like I mentioned again, if you're trying to get 60 grams of protein, 20 per meal, if you have a couple of beans, plus whole grains and other fruits and vegetables, you will get 20 grams in that meal already, and then you do the same thing times three. That is possible. Sometimes you can, if you're not able to put in enough in your diet, like keep the calories down, yes of course, protein powders can help supplement. Tofu, tempe, nuts, seeds are other good sources. Animal sourced protein, eggs, dairy, fish, those are some sources that you could also consider, if that's what you would prefer. Donna is asking about 30 different plant sources each week, what is considered a serving size? In that study, they weren't really looking at serving size, they were looking more at are you getting the varieties? So when you talk about 30 different plants, it was more of like are you getting 30 different kinds?

So are you getting maybe some spinach, and some broccoli, and some green beans, or chickpeas, or carrots. So it's really different plants, but even if you put a little bit, like make a stew with 10 different vegetables in it, but a small amount, that would still count in what they mean. And can a handful of berries or beans, so if it's a handful of berries, that would be one out of the 30. beans would be another one. If you have mixed beans of many different kinds, that would count to the number of types of beans in that stew that you're making. And so that's different options. Eric's asking that, "Is stool butyrate something that we should ask our community oncologist to test for?" That's a good question. Unfortunately no. There is no good standardized, like FD approved tests, that we would say it should be. And another thing to note is that when microbiome in the stool is very much dependent on what you do for the days prior, and it can be quite transient in the sense that if you eat really healthy for three days, and then you don't for two weeks, the two weeks after, meaning at that time when you don't eat healthy, your microbiome might be different than when you've been eating healthy. And there are maybe some baseline changes that are baseline microbes that may be similar, but they do change with diet. So on our Nutrivention study, in just four weeks time, we were able to see that there was an improvement in gut microbiome diversity, increase in butyrate producers by changing their diet and eating more fiber rich plant foods.

So very quickly, we were seeing these changes that even lasted up to a year out, because again, it's because they continued keeping some of those dietary changes, even if not all. But I think that if you are just trying to, like you change it and then go back to what you're doing, it will return to where it is. So in short butyrate has a short half life, meaning that it degrades fast or disintegrates fast. So just now stool butyrate is used as a research test, and I think there might be some private microbiome companies or commercial companies that you could test for butyrate producers or butyrate levels and they'll give you a test, but many of these are not approved or validated. So yes, you could do that just to get a sense if you wanted to, but it's not something that we could recommend across the board and tell patients to do that. I think Tori asked a question about juice and supplements. So juice, I think you know when we talk about juice, or a smoothie, or something, I think one way if you're not getting enough calories, a smoothie is a good way to take in more calories, or a juice because you are drinking. Drinking calories always gonna get more than if you're trying to chew.

If you're trying to lose weight, maybe you want to avoid drinking your calories because you have more than you want to sometimes. And I think juice, the issue is that sometimes when you buy store bought juices, they remove or strip the juice of all the fiber and what you're left with is like a sugar concentrate, and those actually may not be so good for the microbiome health, and there are some studies that suggest so. So I think a fruit, very healthy. If it's a juice, maybe it's something you're making at home in your own blender, like a vita mix, then it has all the fiber in it, and if you're adding vegetables with the fruit, then even better, so it has a mix of things. And then smoothies are, again, because it may have more things than just fruits, I think greens, and potentially seeds or nuts, or other things, that all adds to the fiber and keeps it thicker and keeps people hungrier. I see a question from... "Curious about fatigue," from Donna. "I recently decreased my dex dose and I'm noticing that I experience my fatigue. Is this normal?

Unfortunately I use food to give me energy. What's best to eat in this instance?" It's a good question, and I think, some people find that steroids will make you feel like you have more energy, you need less sleep. Some people actually have better moods, some have worse moods. So steroids, when you're coming down on the steroid dose, it is possible to have some fatigue also because the body is now not getting that extra steroids and now is only has the cortisol that it's making. So I do think that sometimes we have to go against what our body's feeling and maybe stay more active, take walks and things, and those kind of things may help. But I agree also foods, and foods that could give energy, I again, think like complex carbohydrates are things that will give you energy, but also not spike the sugar. So fruits, vegetables, things like that could be really, even a smoothie or again, a juice with the fiber could be something you think about. Tanya's asking about hemp protein. I don't see a problem with hemp protein. Hemp is a good seed to think about including in your diet. So I think hemp protein, if that's something...

Again, with all protein powders, I think just look to make sure that they don't have too much added sugar, if possible. I am not sure if you are aware all of you, but if we look at the US population, on average, the US population takes in about 17 teaspoons of sugar a day. That's the average. So of course many people are much above average, so that's really high. What we'd like to stay below is six to nine teaspoons, six for females, nine for males. When you read an ingredient label or a package, you may see that it says, "Added sugar." I'm not talking about the total carbohydrates, which includes fiber too. So fiber is the good part, we want that, but the added sugar in that, what we see is that often three and a half to four grams of added sugar is about one teaspoon. So if you see something with 16 grams of added sugar, you're already getting four teaspoons there. And a lot of the sugar people eat, it's hidden sugar, it's not what they are really adding every day. It's things that they buy, thinking it's healthy, like a protein bar, but it has four teaspoons of sugar, or things like that, or cereal, or other things.

So it's just important to keep an eye on it. I'm not saying we have to avoid it completely, but if we can keep the level below six teaspoons a day, or even lower, it's probably a good thing. Gene asked a question about the microbiome in relation to GI amyloid. That's a really great question, but because it's such a rare disease, I'm not aware of any study that's looked at it, and it would be something worth looking into, but we would need enough patients who had specifically GI amyloid and to compare that. Adam's asking about any specific nutritional deficiencies common in myeloma patients that can impact outcomes? Really great question. When you think about nutritional deficiencies, I think the most common vitamin deficiency in the world is considered to be vitamin D. New guidelines from the Endocrine Society suggests that maybe we don't need to be checking vitamin D levels in everybody because maybe we are over-treating, or it doesn't make a difference. But in myeloma patients, there are studies, more observational. It's harder to do an interventional study when you think about vitamin supplements diet because think about it, if you tell a group, "Half of you are gonna get a vitamin D supplement and half of you are not," then the people who signed up for the study were like maybe if they're studying it, this might be something worth taking. And then sometimes the arm that's not supposed to take it may take some, or things like that.

So it's a little hard to do those kind of studies. Not saying we can't do them, and they need to be done, but what has been seen in the observational studies, meaning just seeing people who take vitamin D versus not, not doing it as a trial, but just analyzing data of people, and what has been seen is that vitamin D deficiency is associated potentially with worse outcomes, like survival and also treatment response, aggressiveness of disease. So just given all of that data, I would recommend that patients replete their vitamin D to at least 30, at 30 to 50 or so, if possible. And another reason is that myeloma affects the bones, and we want good bone health, and vitamin D is a good vitamin for bone health. Another vitamin that I sometimes see quite a few patients with deficiency of could be vitamin B12. Vitamin B12 is a vitamin that if it's low, people can have anemia.

And so I have seen sometimes, like when we check for... With anemia, so myeloma can cause anemia too, but we also wanna make sure that there's no other cause for the anemia and it's not the vitamin B12 or iron, or any of those things that are causing it. If the vitamin B12 is low, that is something I would recommend supplementing. So I would say those are the two most common ones that we could check for and know. Donna is asking a question about dairy products and lenalidomide. I think that there is some thought post-transplant, and things that some people may become more lactose intolerant, and also, some people are already lactose intolerant. I think if you think about the general population, it's thought to be up to about 70% of the population has some lactose intolerance. so it's not that uncommon to have that. And so I would say that if you are having diarrhea or symptoms while on lenalidomide, it's worth giving it a try and seeing if avoiding dairy helps, and maybe considering plant-based dairy options. Holly's asking about artificial sugars.

The data is mixed with that, and I would say that some studies have suggested that artificial sweeteners can increase cancer risk too, and the International Agency for Research on Cancer has put a little bit of a warning, or said to look into this, and some of those studies have been in mice, or things like that. And then other studies have shown that people who may have artificial sweeteners think that okay they can have more because it doesn't count in terms of the calories, but often it affects the settings of the brain in a way that you end up wanting more sugar after, or needing more sugar.

So for some people actually, they may not lose any weight on it, or may gain weight. Other studies have suggested maybe some people lose weight on it. So I would say, in general, if you can avoid it, that's the best. If you find that you're having it sometimes and it helps, it's not affecting you in any way, then that could be fine. And there may be some studies also looking at how it affects the microbiome. Maria is asking a question about what to eat when you have kidney problems at stage four. That's a great question, and how do you delay progression to dialysis and avoid that altogether? And I think that if you're interested, go to the American Society of Nephrology, sorry the Kidney Foundation, the National Kidney Foundation, and type in like diet and National Kidney Foundation, and you will see that they have a lot of information on nutrition for kidneys and how to delay progression. Actually, they talk a lot about plant-based diets as well in that website, and that's because the plant proteins, there's some research that plant proteins actually when they filter through the kidneys, may not be as harsh on the kidneys as animal proteins in terms of filtering. And so actually it may delay progression when people eat more plant proteins, when they have advanced kidney disease.

I have shared that information with some patients in my clinic. This is very anecdotal because it's a few patients who've made changes, but I have seen kidney numbers stabilize or slow down in terms of progression, or actually improve as well when patients have made these dietary switches. So it is possible. Also avoiding processed foods and sugary foods, things like that because very processed foods will lead to like increased salt intake, and things like that. So we want to optimize blood pressure control, diabetes, all of those things, and foods that are rich in fiber do all of those things too. So it makes sense why that's what they recommend. Anthony's asking what's my take on probiotics? It's a great question, and I think one that needs a lot more research, but I can answer it with a few things. One is that in general, I would not recommend somebody take probiotics just because maybe it's supposed to be healthy. The reason I say that is because there's a study in melanoma, so melanoma is skin cancer, not myeloma, and melanoma, they show that the patients who are taking sufficient dietary fiber, but also taking probiotics actually didn't do as well on immune checkpoint inhibitors. So it's a type of immune therapy, we don't use that much in myeloma, but they showed that they didn't do as well as those who took enough dietary fiber without the probiotics.

But if they took enough dietary fiber with the probiotics, or they did not take enough dietary fiber, they did similar, suggesting that the probiotics maybe have only a few strains of bugs and it doesn't keep the diversity of the microbiome when you're taking that. So because of that little bit of data, I do urge some caution, but at the same time, probiotics can be quite beneficial for some people where they have a lot of GI distress, or things like bacterial overgrowth, or other symptoms, post antibiotics where they are having digestion issues. So if you do find that a probiotic is truly helping you, you may wanna take it for some time and then see if you can taper off it slowly. Another way is to take natural probiotic foods, like fermented foods. So there's so many fermented foods out there, sauerkraut, kimchi, natto, tempeh, yogurt, all of these things, kombucha. So trying those and seeing if that helps as well, that could be another way.

I also wanted to bring up one point, which I thought I should highlight, given the news recently where we hear a lot about seed oils versus butter and fats, and I just want to say, there's a lot of misinformation out there. Seed oils are basically things like canola oil, sunflower oils, flax seed oil, and these are often actually very rich in polyunsaturated fatty acids, similar to olive oil, and so they have actually, in randomized studies, shown that they are actually more heart healthy. And there's a recent study that came out in JAMA that's been circulated a lot on social media, showing that actually plant-based oils were associated with lower mortality, lower cancer, or cardiovascular risk. Mortality, meaning death, compared to if somebody ate the same amount of butter or animal-based fats, because animal-based fats are usually always saturated fat compared to plant-based fats that are usually always unsaturated fat, with a few exceptions like coconut oil, palm oil, and that's why sometimes vegan products that are very processed, and trying to mimic animal-based foods, may have a lot of coconut oil and palm oil because they stay solid at room temperature, similar to animal fats because they are more saturated fat. So if you have cardiovascular risk and cardiovascular disease, I would limit those. So I think maybe we take a few more questions. "For the intervention study, is an extreme diet needed to show microbiome changes? In other words, does adding in greatly, like eggs or salmon, greatly impact the microbiome inflammation?" It's a good question. I think that, again, every step in that direction helps, right?

So if somebody wants is doing an omnivore diet, but they are avoiding all processed foods, refined foods, things like that, that in itself is going to have a significant benefit on the microbiome and they're going to feel better overall. Then on top of it, if they improve their fiber intake and increase it to at least the recommended daily, that may actually make them feel even better, potentially. And then if there are certain foods that they very limit to occasionally, or certain times, that could have additional value. I think for each patient, it has to be individualized, based on how much they enjoy it, what is the risk benefit, and also remember that sometimes we are so used to things that it's hard to imagine not eating a certain food, or doing things because that's just how we've done it all our life. On the trial, we are trying to at least guide patients to make a full change first, see how they feel, and then if they want to, they can obviously add back things if that's what they would prefer. But I think if you haven't made the full change, it's hard to know, do you see a benefit, does it help you or not? So those are some things where it's hard for me to say exactly how much to add, or what to do, and I think everybody needs to take it in terms of what works for them. If others have had good experiences with nutrition, or changing their diet, please put it in the chat or comments so that everyone can see, so it helps motivate others, or at least understand what helps and what doesn't.

I see a question about calcium supplements. I think, of course, when you have osteopenia, osteoporosis, things like that, we do need to think about calcium, or be mindful of it. But one thing to note is actually studies that have randomized patients to calcium supplements or not to see bone health, actually saw a very small increase in bone health, or bone density from taking the supplements. Not to say that we should not think about it, but when they did those studies, they also saw a slightly increased cardiovascular risk with calcium supplementation. And so based on that, the recommendation is when you take calcium, don't take more than 500 milligrams at a time in the day. So even if you wanna take a thousand a day, split it up to 500 twice a day. Don't take 1000 at one time because that excess absorption could deposit into cardiovascular R threes, and lead to increased risk of heart disease. I see a question about magnesium, and I think that magnesium supplements, so I had, for Memorial Sloan Kettering, we did an article on magnesium for cancer. I think if you search my name in magnesium, you'll find the article that summarizes magnesium.

But what Donna is asking a question on that, what I would say is that it depends what somebody's taking the magnesium supplement for. There are two types of magnesium, organic and inorganic. Inorganic are things like magnesium oxide, magnesium sulfate. They usually can cause a little bit of diarrhea because they don't get absorbed as well, and magnesium can cause loose stools. The inorganic forms, like magnesium glycinate, absorb much better, and they sometimes help some people with maybe mild anxiety, or sleeping better, or just better absorption. So it depends what the reason is that somebody is taking it. And if you have low magnesium levels, then maybe something like magnesium glycinate could be a better absorption. So Adam says he had a great experience with nutrition, and he's a believer, and Eric saw a huge difference in his upset stomach after he changed his diet, and he believes it was related to fatty meat, sausage and ground meat. This change started from reading about Nutrivention. Thank you Eric, glad to see that some of the work we're doing is translating into helping patients directly. And I see Garland Daryl Smith asked about, "Is there a nutrition-focused clinical trial open for myeloma patients who are on stable meds without transplant?" So we have Nutrivention four, which is looking at patient's quality of life on patients who finished myeloma treatment induction, plus minus transplant, so whether or not they had transplant, and gone on to maintenance, but they have to have achieved a very good partial response, so like a 90% reduction in their disease, and then they have to come to us to go on the trial within six months of finishing their initial treatment, and then they get 50% chance of getting lenalidomide, and 50% chance of getting maintenance.

That study is almost completed, and within that study, we are enrolling 100 patients, but out of the 100, 30 of the patients are actually going to get diet. And so yes, we are looking at that for a certain like subset of those patients, and I'm hoping by next year, we should have some results to share on how diet affects the microbiome and things while patients are on immune therapies. And Lynn says, "Diet does help so much. Sometimes I let myself cheat one day a week to make it easier." And I agree with that, in the sense of that we have to do it in a balance where it's possible to do it, but at the same time, we are able to enjoy certain things that are important to us.

But I think if you do it in a way that it's very... Like those are occasional and few times, where the rest of the time you're doing it, you're probably going to be able to see a lot of benefits. And Jean says she's mostly plant-based and organic since diagnosis six plus years ago, and no relapse yet. So she feels good. With that, Donna, thank you so much for listening. And John asked how to increase the red blood cell count. I'll take that as the last question. So I think when we think about red blood cell count, we have to think about first what is the cause of it. If the anemia is due to myeloma, no nutrition is going to help to fix that because we need to first get the myeloma under control. If it's due to some other underlying blood disorder, like myelodysplastic syndrome, that too, it's unlikely to help nutrition. Again, same thing. But if it is due to iron deficiency, or if it's a B12 deficiency or folate deficiency, then those things definitely are where you could have some benefit, including changing your diet, or doing that.

So I see a lot of people often just because they have anemia, they'll eat more red meat, but that I don't think really helps because it's only if it's iron deficiency, and even in that, like it's more of like getting iron that's healthy along with everything. So I would not recommend doing it that way, but I think that it depends on what the anemia is from. So with that, I wanted to just say thank you all for being here and listening.

The International Myeloma Foundation would like me to take a moment to also thank their myeloma action month sponsors. So Amgen, binding side, BMS, GSK, Johnson and Johnson, Carriere Farm, Kite, Pfizer, Regeneron, and are a lot of different companies. And thank you to everyone who has logged in and spent this last 30, 40 minutes with us. And before you log off, on your tablet or phone or somewhere, I challenge you to take, put a hashtag myeloma milestone, and maybe post something about your myeloma journey, and maybe about nutrition and how it's helped you along the way so you inspire others as well. It's good to see you all. And I do post a little bit on MD, whether it's on Facebook, Instagram, LinkedIn, Blue Sky, or Twitter. So if you want to hear more about these updates, those are places you can hear about things we are doing in our studies too. Great to see you all. Take care. Bye.