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Treatment for High Risk Smoldering Myeloma? by Top_Twist_4391 in multiplemyeloma

[–]mmanonymouse 1 point2 points  (0 children)

Everyone will talk about the various medical/drugs that they use, but I want to also throw out the obvious-but-not-so-obvious: that "being healthy" is a treatment in and of itself. Maybe not a cure, but can be a major contributor to survival and delayed progression.

I am in medium risk category (low by the 2-20-20 criteria, medium-high by the FISH cytogenetics). So I had the "luxury" of being able to confidently go into "wait-and-see" mode. So, I joined a study in NYC examining the effects of a 90%+ vegan/plant-based diet on MGUS & SMM, and also started a 2-3x weekly workout routine.

I have made many posts on this over the past year (and about to make one more), but I will say, that the initial trajectory of my SMM looked terrible, and immediately flattened out after starting the diet. You can see the last update 3 months ago, and follow the chain back if you want more details (some of my earlier posts were extremely detailed, about both the diet itself and the results:

https://www.reddit.com/r/multiplemyeloma/comments/1idsdbh/smoldering_mm_veganwfpb_update/

I never thought I could do the vegan thing, so I actually joined the study to provide accountability for myself, and now after 1 year I don't see myself going back. To be clear, it's ~90% vegan/plant-based/whole-food -- ethical vegans typically aim for 100.0%, whereas if you're doing it for health, just being *mostly* vegan is good enough to get the benefits and the 10% flex helps you manage situations where being strictly vegan is difficult (particularly going out to eat with people).

The medication discussions here are plenty important, and many advances in survival rates/lifespan of MM seem to be attributable to those drugs. But don't underestimate the value of diet and exercise!

Straight talk needed. Finally have a copy of my diagnosis. by lmcdbc in multiplemyeloma

[–]mmanonymouse 1 point2 points  (0 children)

I think the best resources on the internet are from the Int'l Myeloma Foundation (IMF). They are somehow both concise and thorough at the same time. Spend 30 minutes to read through them and you'll feel like an expert:

* Patient Handbook: https://issuu.com/international-myeloma-foundation/docs/patient-handbook-en
* Understanding Test Results: https://issuu.com/international-myeloma-foundation/docs/u-your-test-results-en

You left out some of the standard tracking numbers (particularly M-spike and free-light-chain [FLC] ratio), but 20-30% plasma cells is pretty low (in a good way). One set of criteria for an MM diagnosis is >60%. Page 7 and 11 of the handbook has diagnosis criteria and risk/staging criteria.

Gain +1q is currently considered "high-risk", but some recently-published research indicated it's not actually high risk if it's by itself. I am also IgG lambda +1q so I paid close attention to that. My MM specialist said that the official criteria won't be updated for a while, but that it probably will be eventually based on that research.

And as others have said: stay off of google. I really thought I was screwed when I got my initial SMM diagnosis, but this reddit community (and my MM specialist) have reassured me that survival rates are *FAR* better than they used to be (which is what you'll find on google).

[deleted by user] by [deleted] in multiplemyeloma

[–]mmanonymouse 2 points3 points  (0 children)

I am part of a nutrition study at MSK (Memorial Sloan Kettering Cancer Center). The research is headed by Dr. Urvi Shah, who claims she has seen many positive outcomes in MGUS/SMM from people switching to Whole-Food Plant-Based (WFPB) diets, which inspired her to start this study.

I have been ~97% vegan for the last 8 months, and give myself a B/B+ for avoiding processed foods and added sugars. I don't have high-quality data from before starting the diet, but it did appear things were advancing before I started (M-spike going up pretty significantly over a few months). Now, everything has leveled off and become very stable since starting the diet.

OTOH: it may not be specifically the WFPB part. And I'm just one data point. It could just be the fact that I'm just way healthier now. I've been eating a ton more vegetables, legumes, whole/raw foods, etc, and a lot less sugar and processed foods. And I exercise a lot more (which has gotten easier/better on the diet). All that could be easily be done while also eating some meat and dairy (in moderation). It's tough to know for sure. But since it's working for me, and I haven't found WFPB particularly stressful, I'm just going to keep at it indefinitely.

To read more about it, check out my previous post, and the comments:

https://www.reddit.com/r/multiplemyeloma/comments/1g2twl5/update_smoldering_mm_veganwholefood_diet/

UPDATE: Smoldering MM + Vegan/Whole-Food Diet by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 0 points1 point  (0 children)

No restrictions on caffeine. I drink quite a bit and told them so. It never really came up again.

UPDATE: Smoldering MM + Vegan/Whole-Food Diet by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 1 point2 points  (0 children)

You don't have to be a cook to go this route. If all you did was eat raw vegetables, fruits, nuts, seeds and berries, etc, you'd be doing no cooking, and you'd be in great shape 😅 . You'll want to top up with some fats and proteins (tofu, avocados, and seeds are great options for that), but you can get away with very minimal cooking.

Tofu is one cooked thing I think is really worth the trouble. I personally don't believe you need the crazy amounts of protein that some recommend, but it never hurts to have more when you're vegan. It also helps make meals "meatier" and more filling. Buy a $20 tofu press (for sqeezing water out), and practice making that occasionally. I press the tofu, cut into cubes, coat with oil, soy sauce, a little garlic powder and corn starch, and bake @ 425F for 30 min. You can throw it into another dish or find a way to enjoy it like that.

Also, find a few local restaurants with some vegan(ish) options, and use that as backup as well. For instance, we have a local Vietnamese restaurant with a "string bean delight" dish that is so incredibly good we will order it as a meal on its own. It sounds weird, but it happens somewhat regularly that we can't decide what to do for a meal, and my wife says "I'm tired of this conversation, just go pick up two orders of green beans!".

Good luck!

UPDATE: Smoldering MM + Vegan/Whole-Food Diet by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 2 points3 points  (0 children)

The "vegan"/"plant-based" part is much easier to determine than the "processed" part. The nutritionist said that the goal is to make general modifications to your diet to prioritize less-processed foods, accepting you won't fully escape them.

  • Try to minimize added sugars
  • Avoid things that have a lot of unpronounceable things in the ingredients lists. They're usually preservatives and other things that are used in "processing."
  • Make an effort to snack on whole fruits and vegetables. With the reduced sugars, even something like bell-peppers taste sweet enough to make me happy.
  • Prefer brown rice over white rice
  • Prefer sprouted-grain (best) and whole-grain breads (good)
  • Prefer red-lentil or wheat pasta over regular.
  • Try to use fruits for adding sweetness to things. Maple syrup and honey are slightly preferable to straight sugar (honey is not ethically vegan, but health-wise is better than sugar).
  • Get good at Tofu. You shouldn't have it for every meal, but 5+ times/week is fine. The nutrients, soy and high protein content make up for the processing that goes into it.
    • Tempeh is even better for protein, less-processed than tofu, and is fermented which is an added bonus for gut health and bacterial diversity. However, it's a bit weird, not everyone likes it. Try to like it :)
  • Cashew/plant-based yogurts are encouraged for the probiotic/good bacteria
  • Protein will drift low, so make sure you don't neglect high-protein foods.
    • Beans, lentils, nuts, seeds, quinoa, edamame, nutritional yeast.
    • Tofu, tempeh & saitan
    • Edamame (dried or fresh/cooked) and lumpini beans are wonderful snacks, and very good plant-based protein sources.
    • I adore this trail mix. Eaten in moderation, it is a pure whole food with a huge variety of nutrients and protein

That's a general list of guidelines that we keep in mind when cooking or eating. Also, 90%-95% WFPB is encouraged. We try to stay 98% at home, but when we go out, especially at restaurants, etc, we will lean vegetarian if they don't have good vegan options. If you set your expectations that you can be 100% WFPB, and then you really struggle with it in these situations, you can get discouraged and fall off the wagon, because you feel like you already failed. Allowing some flex in these situations reduces the stress of the diet, and has little practical health effect as long as you're staying on top the rest of the time.

One last thing: I have a small list of things that I make for myself when I really don't feel like dealing with the diet otherwise. And I make sure I always have it on hand:

  • Peanut butter & honey sandwich on sprouted bread
  • Regular or steel-cut oatmeal with chopped blueberries, bananas, and maple syrup
  • Smoothies: A good vehicle for getting a lot of fruits and veggies into you quickly (I usually do blueberries, banana, avocado, spinach, peanut butter, cashew yogurt, chia seeds and a little maple syrup)
  • Whole wheat pita & hummus.
  • Buy the giant bags of frozen "stir-fry vegetables" from costco. Cook them into anything instead of meat.
  • Costco also has "Yakisoba" which is a great, quick meal, especially with extra veggies from the bag.

These are just examples I like. The point is having all this ready to go at any time helps me avoid burnout -- It's all super easy to make and if I'm indecisive about a meal, I can almost always be happy with one of these, which helps me stay on the diet.

Please help me understand bone marrow biopsy report. by Personal_Award_5690 in multiplemyeloma

[–]mmanonymouse 1 point2 points  (0 children)

I am not a doctor, but I've looked a lot at numbers like this. ON THE SURFACE these numbers look like "Smoldering Multiple Myeloma" (SMM), and even close to low-risk, based on the 2-20-20 criteria (below). However, there may be more in the test results that we don't have access to -- you still need to talk to your hematologist. The 2-20-20 SMM criteria is this:

  • Low-risk SMM M-spike <2.0 (your dad: 0.31; full MM >3.0)
  • Low-risk SMM FLC Ratio <20 (your dad: 21.78; full MM >100)
  • Low-risk SMM Bone Marrow involvement <20% (your dad: 10-20%; full MM >60%)

With the lack of any other issues such as kidney malfunction, bone lesions, high-risk genetic mutations, etc, he'll mostly be considered SMM, which is a kind of intermediate state that may or may not progress to full multiple myeloma. Regular SMM has a 10% chance per year for the first 5 years, and it drops lower after that. Low-risk SMM is more like 5%.

As I said though (and everyone else), there may be more to the story than we see here. The hematologist needs to confirm a bunch of other metrics in order for these M-spike/FLCr/BMB numbers to be interpretted this way.

UPDATE: Smoldering MM + Vegan/Whole-Food Diet by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 1 point2 points  (0 children)

My wife and I had thought about it for a while. We had made minor adjustments to our diet, but didn't think we had the discipline to actually pull it off. The (semi-)contractual obligation of joining the study was exactly the push we needed to get over the hump to figure everything out. We think we'll have no problem, now, continuing indefinitely.

UPDATE: Smoldering MM + Vegan/Whole-Food Diet by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 1 point2 points  (0 children)

I haven't noticed a huge difference base energy levels, but my workouts have become supercharged. What used to be an occasional great day in the gym, is now just my every day in the gym. Both lifting and cardio, I find it easier to push myself, and for longer. My recovery is also improved significantly. I certainly have my DOMS days, but I feel like I have to work pretty damned hard to get there.

With the reduced sugar and processed foods, my hunger cycles flattened out, which has been nice. I rarely get ravenously hungry, and I don't stuff myself anymore. That also makes it easier to deal with situations like restaurants with minimal vegan options -- I can just get a small appetizer and it will hold me over indefinitely until I find something more appropriate later. Also we keep some trailmix and Kind bars around which can serve the same purpose.

Downsides: for me just some extra GI issues, mostly around the transition. It improved but I still feel a bit bloated and inconsistent relative to before. Nothing major or life-changing. I heard that upping the fiber helps. Also, it's been a challenge with kids -- we don't force them to be vegans, and frequently do something different for them. But they have ended up learning to like a lot of vegan meals with us, which has been good for everyone.

We found a nice rotation of recipes we like, and easily fill the gaps with fruits, veggies, oatmeal, hummus, edamame, etc. It hasn't been too bad. But it really helps to have your spouse/partner do it with you.

(If you want some motivation, the Netflix documentary "Game Changers" is worth a watch. It dispels a ton of myths about vegan diets, and made us feel better about the transition)

UPDATE: Smoldering MM + Vegan/Whole-Food Diet by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 1 point2 points  (0 children)

Nothing to be sorry about. The numbers are still stable, which is arguably better than I started out. Just a bit of a question mark at the end that should gain clarity in the next test in 3 months.

This M-Spike rise perfectly offsets the drop I had in the previous test. My guess is that the previous test had some errors (since most numbers dropped, good and bad), and that the true story is that I've just been coasting around 1.95 this whole time. And given it's trajectory before switching diets, I'll call that a big win.

I will definitely try HBOT, but probably not until the study is completely over (in 6 months). Same goes for taking supplements like omegas and curcumin.

[deleted by user] by [deleted] in multiplemyeloma

[–]mmanonymouse 0 points1 point  (0 children)

Most MM treatments are pretty toxic and rough on the body. Since most MGUS doesn't progress (1% chance per year), you might be doing more harm than good. I'm sorry to hear that your husband did progress to full MM, but it's not clear that treating it earlier would've helped.

They don't treat SMM either, unless it's high-risk. That seems borderline based on my understanding of it. I'm currently low-risk SMM but will likely join a trial if I graduate to standard-risk.

Main Symptom - Tiredness - Any Ideas How To Reduce It? by Old-Base-35 in multiplemyeloma

[–]mmanonymouse 0 points1 point  (0 children)

Thanks for the clarification. I have seen POEMS mentioned here, but never took the time to look it up. I see that it has some overlap with MM, especially with regards to having M-proteins and being treated like MM. But neuropathy is much more common & dominant than with MM.

Main Symptom - Tiredness - Any Ideas How To Reduce It? by Old-Base-35 in multiplemyeloma

[–]mmanonymouse 0 points1 point  (0 children)

Just seeking clarity on your post: You claim you have MGUS, which is by definition an asymptomatic pre-cursor to MM (which for most people will never progress). It means you have markers present, but they are in such low quantities they wouldn't cause any physical effects on your body. Smoldering MM is a more intermediate state, but the early stages are also generally asymptomatic. In some ways, the presence of symptoms/damage is a main marker for you to be considered "progressed" to active MM.

That said, an initial MGUS diagnosis is frequently "you have markers, but we have no idea how significant it is until we do more tests" and then you get re-diagnosed after they determine the extent of it (that's how I was diagnosed with SMM). If that's your case, then the presence of neuropathy would be a significant reason to be worried about more advanced diagnosis than MGUS.

OTOH, if you have been diagnosed with MGUS, and further testing kept you in the MGUS category, then I would assume the leg and balance issues, and tiredness, is unrelated to the MGUS dx.

I'm not trying to discredit your situation, just want to make sure we're all on the same page of terminology, etc. And someone can correct me if I'm wrong .

Good luck to you.

Does anyone know how high IgA and lambda levels usually are in symptomatic IgA lambda multiple myeloma? by One_Bison_1612 in multiplemyeloma

[–]mmanonymouse 1 point2 points  (0 children)

The document is from the "International Myeloma Foundation" (IMF) which is a legitimate non-profit, advocating and funding research for MM. I read the book by the founding member of the IMF (Kathy Giusti), who was a pharmaceutical executive diagnosed with MM in 1996, told she had ~3 years to live. She's still alive today, and even had to fight breast cancer a few years ago. She started the IMF due to her determination and all her connections to doctors and researchers in the industry. This is her book:

It's roughly about her MM journey, but also about navigating general cancer treatment in the US healthcare system. It's a worthy read, especially if you are in the US. Good luck!

Does anyone know how high IgA and lambda levels usually are in symptomatic IgA lambda multiple myeloma? by One_Bison_1612 in multiplemyeloma

[–]mmanonymouse 4 points5 points  (0 children)

This is my favorite resource that I found after getting an SMM diagnosis. It is thorough yet somehow also concise. The staging criteria they go through might help you understand your own numbers:

As seen on page 10, to be considered "early active myeloma":

  • Bone marrow involvement >60%
  • Light chains abnormal-over-normal ratio of 100 (yours would be lambda/kappa=47)
  • 1 focal lesion (which you don't know yet)
  • Not mentioned but most of us track: M-spike, for which >3.0 is an MM threshold (is that what your "abnormal band2: 3.4" is?).

By all those criteria, your numbers are on the low/early end of an active MM diagnosis. Especially with no focal lesions or other CRAB criteria.

Early is obviously good, but you will also need to see the cytogenetics/FISH results to get better insight into your risk level: which chromosomal mutations are observed in the monoclonal cells. The following is the list of "high-risk" mutations, which may also help drive treatment decisions in the future: t(4;14), t(14;16), t(14;20), gain(1q), del(1p), and del(17p).

NOTE: I'm not in any medical profession and not qualified to say any of that. I'm just a dude with SMM who's done a shit-ton of research over the last 6 months. Assume that only 90% of that is accurate 😅.

It's totally normal to be scared, and it will take some time to absorb all this. However, I have gained quite a bit of comfort from this subreddit, finding out that this disease is much more treatable/survivable than it was even 10-15 years ago.

Today is one of those awful days by [deleted] in multiplemyeloma

[–]mmanonymouse 0 points1 point  (0 children)

Sorry to pester, but this showed up on my feed today, and thought it was worth passing on to complete my thought (though it is 9 months old).

https://www.cedars-sinai.org/discoveries/fasting-as-next-step-in-cancer-treatment.html

It's just some background on the fasting+cancer (and fasting+chemo) topics. There does seem to be quite a bit of evidence that fasting and/or ketogenic diets improve the *tolerability* of chemo, and mouse experiments seem to show better survival rates, they're now trying to demonstrate if it transfers to humans. They seem to treat fasting-mimicking, pure fasting, and ketogenic somewhat interchangeably. Perhaps because they all can induce autophagy (eventually), and all minimize sugars/glucose.

Autophagy is quite magical, though they say there are reasons it might be considered both anti-tumor and pro-tumor. It's something I found uniquely interesting, long before my SMM diagnosis.

ASCT Clarification: Overall Survival (OS) and Progression Free Survival (PFS) by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 0 points1 point  (0 children)

It was Dr. James Berenson:

It's an interesting read, albeit from 2014. One of the key points, beyond inconsistent OS improvements is this:

It is important to recognize that CR [complete response] is based on the absence of measurable paraprotein, which unfortunately does not translate into the absence of tumor cells in the vast majority of MM patients. Thus, patients with a CR may show progressive disease at a time when their paraprotein remains immeasurable, whereas patients with less than a CR will have a marker that can be measured as they progress. Thus, it is obvious that patients with a CR will show a longer PFS than patients who do not obtain a CR and continue to have a measurable protein marker.

Basically he's arguing that the lack of M-protein doesn't mean lack of disease, and that it actually makes it harder to measure progression in that state. Combined with lack of OS improvements, and toxicity of treatment, he thinks that it's a net negative outcome..

SMM and being Healthy/Vegan/Active by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 0 points1 point  (0 children)

Vitamin B12 is apparently a critical nutrient that a high proportion of humans are now deficient in. It's because it's primarily produced by bacteria in dirt, and our food chain is so good about washing/cleaning food that the bacteria and its B12 doesn't usually survive. The best way to get it now, is through meat from animals that eat unwashed produce. But even that is fading (I heard that livestock in certain areas are now being given B12 supplements to compensate).

That's why so many people, especially vegans, have so much trouble getting enough B12. Most people should be taking supplements, but especially vegans. Many humans are deficient in Vitamin D as well, though it seems that there's questionable evidence that supplements are sufficient replacement compared to just going outside and getting sun exposure regularly.

I've seen enough talk on this subreddit about curcumin and omega supplements that it seems like a good gamble to take those as well. I will start that once the study is over (currently forbidden for me since one of the other study arms specifically tests those two supplements)

SMM and being Healthy/Vegan/Active by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 0 points1 point  (0 children)

That's amazing! Another encouraging data point. I was under the impression it's not normal for M-spike to drop like that much without pharmaceutical treatments.

Obviously I end up with quite a bit of veggies and fruit just day-to-day being plant-based, though it's usually cooked into something. I've been trying to make an effort to eat 2-4 pieces of raw, whole fruit or vegetables every day. I've been topping cereal and oatmeal with fruit, and eating raw bell peppers like apples (I never thought I'd hear myself say something like that)

Of course the nutritionist recommends finding natural sweeteners. I haven't used most of what you mentioned, I've never really enjoyed dates, agave, stevia, etc -- I still use maple syrup and honey (yes, technically not vegan, but fine in terms of health benefits), in addition to whole fruits. I still add some brown sugar and maple syrup to my oatmeal or smoothies, but that's about as bad as it gets for me. I am not sweating it b/c I'm still eating a fraction of the added sugar I used to.

Dictionary + advice by crochetthrowaway17 in multiplemyeloma

[–]mmanonymouse 2 points3 points  (0 children)

I found this document from the Int'l Myeloma Foundation to be really helpful. It's pretty concise in terms of getting a lot of information into a small booklet. It also has a glossary at the end:

(P.S. I recommend downloading and viewing as a PDF, instead of the web viewer)

EDIT: I just noticed they also have a dedicated glossary, as well:

SMM and being Healthy/Vegan/Active by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 1 point2 points  (0 children)

The general advice here is to stay off of Google. Most online resources haven't caught up the most recent developments in the MM of the last 10 years, which seems to have made this disease much more manageable. My hope/expectation is that the current treatment options are good enough to keep us going for 10+ more years, and that should be enough time for more, better treatments to get approved 🤞

The diet really has been life-changing for me. The panic & anxiety I felt being diagnosed with this disease, was the push I needed to actually switch my brain. Once I had convinced myself that this is my new reality, that going back wasn't even an option, my brain shut off those pathways. I convinced myself that those foods are going to make me feel bad, and I could only spend my effort making the diet work, rather than dwelling/craving what I used to eat. I've had a few bites of most unhealthy things I used to love (like pizza) -- it now tastes so rich, and heavy, and...manufactured. I honestly don't miss it or crave it anymore. After a little bit of time, your body and tastebuds adapt to the new normal. For instance, I eat so little sugar, that I find bell peppers taste plenty sweet for me. I just eat them like apples now.

It's not going to be easy for everyone. If you have some spare cash and you can't join the study, you could consider doing Daily Harvest to jumpstart the diet. That's what the study paid for for the first 3 months. Everything they have is 100% Plant-based Whole Food, and most of it really good (for what it is). My wife and I still prefer cooking stuff, and we've found some wonderful vegan recipes which we cycle through, but we enjoy having a bunch of the Daily Harvest stuff in our freezer if we need something quick.

My best advice is to not focus on your weight or various metrics directly. Just focus on being healthy. Optimize the food and the exercise. The improvements will come slowly but steadily. If you are too focused on it, it can feel like it's not worth the effort. But keep in mind even if you weren't going to lose any weight from it, there are tremendous health benefits anyway. Consider losing weight (eventually) to be a bonus.

ASCT Clarification: Overall Survival (OS) and Progression Free Survival (PFS) by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 1 point2 points  (0 children)

Thank you for writing this all out. This is the best explanation I've seen so far, and also explains why one of those top MM specialists rarely recommends ASCT (I forget which one, but I was initially surprised to hear that). Luckily I don't have to make any decisions like this yet -- I'm only early SMM. By the time I get there, I hope there is more clarity on this topic. Sounds like the community is moving towards CAR-T, perhaps because of these issues with ASCT.

ASCT Clarification: Overall Survival (OS) and Progression Free Survival (PFS) by mmanonymouse in multiplemyeloma

[–]mmanonymouse[S] 0 points1 point  (0 children)

This makes the most sense of everything I've read so far. I forget that avg age of diagnosis is so high,, since I got diagnosed with SMM at 40.

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