#MyelomaActionMonth | Q&A with IMF NLB Member Beth Faiman: Watch the Replay

welcome everybody to the Facebook live my name is Beth faman and I'm just going to be waiting for people to join thank you so much for coming today I'd love to see you pop up in the chat and I'd love to see where everybody's coming from welcome welcome welcome everybody as you coming in thank you I'm watching myself for my phone so I can see if I'm talking to myself for other people and unfortunately I see other people I hear thanks Beth hi I am not alone this is great news I am my own um it per

son tonight so if things go wrong it's my fault and I hope that does not happen I'm really looking forward to a great discussion with all of you and I'm just going to go ahead and give us about another minute or so for those to join everybody's popping in hi Angela Jasmine this is great maybe type in the comments where you're coming from I see some from Florida great I'm in Cleveland Ohio and it felt like Florida today it was 70 and sunny oh I see Robin is coming from CT Connecticut that's great

wow there's so many great people Kathy is coming in from got North Carolina New Zealand I love New Zealand I was there visiting my friends um in Australia Melbourne and Sydney I was there about four years ago so I'd love to come back and I'd love to meet you if I'm in there that oh Canton New York South Jersey we really have a great great distribution of people here oh good wow Texas and we have a hi from from somebody that isn't curtain Susie o Stephanie Smith from Toronto Canada most of those

most of you who know me my husband's from Winnipeg Manitoba in Canada and I kind of feel like I'm an honorary Canadian Canada is just a couple hours straight drive up North about 3 hours and so I love to go to Canada my son just took up ice hockey as well and so he considers himself a Canadian hockey player so um fun stuff I think we're about uh two minutes in we have Denise from Chicago my friend Steve hi Steve also from Florida but he knows and I know who he is and so he doesn't have to quit

his location all right all right well okay my name is Beth faman I want to thank you all for joining in today gosh this is great to see all of you from all over I think I was instructed to give maybe one more minute for everybody to get uh get set up in here and um I'll do my opening remarks and we'll get into some question and answers uh fortunately uh many of you had um said sent in some questions ahead of time but what I'd like to do is try to get to maybe one or two of the uh prior questions

and then I will get to the um ones in the chat uh these uh half hours I was just saying go so quickly and I really enjoy being able to do them and and answer as many questions as I can so I'll try to be brief into the point and remember you can always go to mya.org has lots and lots of resources for you um so that you can um be able to research on your own we also have the cancer answer line so anything that I don't answer for you today uh you can also go to the uh cancer answer line as well um

okay we are I think I think we're good oh by the way Steve is a goalie that's great to hear wonder how your knees are these days um okay so hi everyone I'm Beth faman and I'm thrilled to welcome you to this special Facebook live event as part of the Myoma action month Myoma action month is a global social awareness campaign that takes place every march to raise awareness for multiple Myoma every March we urge you to Champion Myoma action month to make impact on those living with Myoma throughou

t March we're shedding light on multiple Myoma and empowering patients and Care Partners with valuable information whether you're a patient or a care partner or simply curious about multiple Myoma this question and answer session is for you drop your questions in the chat and I'll do my best to address them during our live discussion and if you're looking for more ways to get involved during Myoma action month please be sure to visit ww. Myoma action month. org and don't forget that there is goi

ng to be a broadcast with Dr um sadman uh for Memorial slone cting and of course Dr Joe and everybody knows Dr Joe as well so let's get started okay let's see who's in let's see if there's any questions in there yet I'm going to get started on one of my questions that Linda sent in already Linda says my husband has multiple Myoma he has little appetite but he is forcing himself to eat plus he has high calorie boost daily do you have any recommendations for anything that might stimulate his appet

ite danabol was prescribed and did not help him are there any CBD oils or other things that might help Linda I am so sorry to hear about your husband and his struggles with eating there are so many things to consider number one what's the type of treatment that he's taking is there an opportunity to discuss this side effect are you you know with the with the main treating team and sometimes we have paliative or other Specialists that might be managing this loss of appetite but the treating oncol

ogist doesn't understand the gravity of the situation I think it's important to not overly stress out about food food should be good and I think sometimes the Care Partners and patients you know have different perceptions about the food so I look at things like their weight are they keeping their weight maybe they're not eating as much they're taking their shakes but their weights about stable I look at the treatment regimen is there Myoma in a point of remission where they can take breaks for e

xample there's a medication called tmab which is a newer bispecific antibody it has a special Target called gprc5d and we recently learned at our Ash meeting in 2023 December that if patients had a really good response to that Tel quam by specific then you can go to less often and so the taste is better and the appetite can get better for some people another medication called selinexor which is a pill and the selinexor is very effective at controlling Myoma for many patients in combination with

other drugs sometimes by holding or reducing the dose of selinexor that can help the appetite so again I'm not sure and I don't want to take too much time left on this question but I'm not sure about what medication he's taking to treat his Myoma I would like to investigate other causes get a nutritional consult and also enact the help of gastroenterologists and definitely talk with your treating oncology team about that side effect take advantage of small meals take advantage of when you actual

ly crave food and try to avoid the foods you love so that when you do feel like eating more in the future then hopefully you'll be able to um do that so um thank you so much for asking um I'm going to go back to some of the questions so okay so um my wife is 45 years old with no symptoms except for hypothyroid and taking hormone therapy while comparing her medical records for the last 10 years they've discovered that the total proteins were always on the high side and didn't Cross Too High um is

this something to be worried about now without getting into too much detail because we don't want to do too many uh details we want to speak in general about health whenever anybody has elevated total proteins one of the most effective tests we can do is something called a serum protein electris or spep that's a test that a primary care provider or a GP depending on where you live globally can order in many areas it looks at the protein so now sometimes you can have elevated total protein but t

here's a lot of different immune conditions that can cause that so it doesn't necessarily mean it's multiple Myoma so if she hasn't been diagnosed with multiple Myoma yet we can see if there's somebody in her community or in her area that can check this spep test and it looks at all the proteins down a gel field for this Spike that you can see for Myoma so again I would get more information from the GP and look at other things we have this thing called crab criteria it looks for hyperal cmia ren

al or kidney problems anemia and Bone damage so putting the pieces of the puzzle together with all the lab tests that look at organ function blood counts that look at your hemoglobin hematocrit and other blood cell indices as well as that protein test will tell you if there's something to be concerned about so I think you need a little bit more information before you start worrying it's easy to worry about a condition until you're diagnosed um but definitely get more information in the appropria

te blood test and you can always go to mya.org there's an understanding blood test and outlines the common test that we do for Myoma if you're in an area that might not actually have um a lot of availability for blood testing okay so um going back down in the chat my question is always the same wondering if you reach MRG negativity after induction what is the benefit of doing stem cell transplant well I'll tell you you if you ask 10 Myoma Specialists Terry you're going to get a 100 different ans

wers quite frankly so mrd is a diagnostic technique it stands for minimal residual disease that is using a test called Next Generation sequencing or NGS that looks for one in a million plasma cells in the bone marrow most of you who know me know I've been managing Myoma for almost thir well I don't want to age myself too much I started taking care of patients in 1994 with multiple Myoma and more actively more recently in 9596 and at any rate um mrd is a technique where we can very specifically s

ee one in a million um plasma cells in the bone marrow under this next Generation so it's kind of like looking from outer space we can look at cytogenetics in the bone marrow so it gives us a good blueprint but when you do next Generation sequencing it's literally looking like in the back of the eyeballs that's how close you can look at these things so anyhow um if you have very little plasma cells in your bone marrow the idea is that it will translate to an improved progression free survival lo

nger remission period but the jury is still out in my opinion I don't use mrd testing to decide whether or not to give people treatment a b or c but if you're losing mrd I might deepen the treatment so I wouldn't take away treatment but I would add on treatment if you're not deep enough again the problem is is that I've been in the Myoma space in the 1990s and 2000s we never achieved mrd it was like that Black Swan initiative that Dr Dury talks about you never thought there was a Black Swan unti

l you saw one just like we never thought there's a possibility for a cure until we found some potential cure so um I know I keep talking but I'm very passionate about this ofd it's a great test but it's a nice to know not need to know I look at the individual pictures so why would you or would you not want to transplant talk about the risks benefits and alternatives to your your providers I absolutely have many patients that do not go for upfront transplant and I don't think that's an unpopular

opinion with all the new drugs so if you are mrd negative or if you had a wonderful response and you say it's not right for me right now then that's okay we keep giving you reduced doses of what achieved that remission status keep monitoring your treatment remission status and and keep a close eye on you so um I don't know if I answered your question um but if you ask like I said 10 different Myoma doctors you'll get a 100 opinions people say absolutely um still do a transplant if your mrd negat

ive and I kind of I don't think you need to I think it's a decision a personal decision you should make with your treating team so okay uh what levels a PA of proteins and Lambda and Kappa will you um know if you're in the early stage or late stages there's a lot of confusion with crab and such so um so Kappa and Lambda tests are different parameters so when you look at uh the how how we diagnose Myoma it starts with the immunoglobulin so in our bone marrow our plasma cells make all the healthy

immune cells or many of the there many mature uh part of the immune cell makes intact immunoglobulins that are y-shaped antibodies and that the role of the IM inulins are to make proteins to protect you from getting sick they make mostly these heavy chains IGG IG and IGM and then there's this light chain component that's cap or Lambda now some people will just have the cap and Lambda fly off that light change structure so you might not have an M Spike or an intact IGG cap or IGA Lambda so for so

me people that light chain is how we measure their disease and before 2004 before we had a test called a light assay that those patients were called nonsecretory patients they didn't secrete the protein we couldn't measure their disease since 2004 we've been been able to understand that the cap and the Lambda light chains are a marker of remission status so the international Myoma working group does have response criteria so when we start treatment in somebody with a light chain type let's say y

our Lambda light chain is 2,000 when we start treating your Myoma we still want to see that go close to normal or in the normal range if possible and then we watch that Lambda at the very low level and make sure it doesn't go up by 0.5% 0.25% there's different parameters um that would be a sign of relapse so again where what type of protein do you have how high was it where was it located and then watching that on a regular basis now each provider has different ways of monitoring my Loma in gene

ral for the first year I do monitoring about every month sometimes more often but usually every month is all that's recommended by the guidelines and then once you've achieved this nice remission we could maybe go to every two months or every 3 months if you've have a sustained nice remission so again these um the moma.org website has a nice understanding Labs module so maybe that would help make it more sense for how to look at the um Labs okay um so Kathy says I have been on darc since January

2019 how long will it keep on working yay Kathy um I am so happy to hear that you've been on darx for so long darx is a medication called an anti- cd38 monoclinal antibod when it was approved in 2015 for patients that had had four or more prior lines of therapy we gave it in the IV and it took all day to give now most people people can get a shot in the belly over 3 to 5 minutes of course it takes longer to mix the medication than it does to give the medication but we can give it on a weekly um

weekly for eight weeks then every other week and then monthly recent studies published at American Society of hematology meeting in the last year including 2023 show that newly diagnosed and relapsed patients with Myoma can have nice long durable remissions what's nice about DARS Alex is it has very few side effects um we worry about infections such as pneumonia low low immune counts so watch out for pneumonia and respiratory infections on darx or and then we also want to watch for shingles so

you should be on aycl in terms of how long it'll work for you for some people um with quote unquote good normal genetics of type of Myoma normal fish not high risk you can stay in remission for months to years just on Dar DaRuMa or darx maintenance especially if it's given in combination we have studies for smoldering Myoma with that drug we have studies for patients that have been on uh remission after stem cell transplant and I've had people that have been on that medication since 2017 as well

so the fact that you've been on it very long is a very good prognostic um marker um but continue to have your blood counts monitored continue to live well so you can stay healthy for your next treatment try to be as active as you can not necessarily running a marathon but just being as active as you can keep the blood flowing make your um appointments and sometimes if you take planned trips we can stretch out that uh that darx treatment as well um but hopefully you'll be one of our what we call

Exceptional responders that will continue going on and on for many many years so I know I didn't give you a number because I don't know you but in general since you've done for a long time you can continue to do well if you stay on course um okay let's see Laura said if tanum stem cell transplant to to do not achieve a remission at what point would carti be an option M spike is 2 oneyear post transplant currently taking pomus one cycle asking for my husband um again not getting into too many de

tails you know when we make these recommendations and answer these questions we don't know the background Cy of genetics of the tumor but there are as doctor and I don't mean to talk to him about him because he not here but Dr jury always uh would say there's three types of patients patients that would go into a complete remission patients that would go into not quite a zero but go into back this mgus stage where there's just this low-level monoclonal gammopathy and then patients that might not

respond well at all and that's kind of how I view Myoma is that everybody's different so we take into account the genetics of the tumor those fish tests you have high- risk characteristics was this LDH level high at diagnosis where you're really sick at diagnosis any kidney failure at diagnosis we also take into account uh the patients's age and fitness and other comorbid conditions when we kind of guesstimate how things will will be looking now when you had two transplants and the M spike is 02

one year post transplant if if you're on a maintenance pomus then sometimes just staying on that pist over time can deepen your response we've seen this other other drug like revlimid and some of the drugs that there atuma that just staying on treatment longer can eventually deepen that response so I would stay the course for right now and get regular lab monitoring the again the international Myoma working group recommendations are if the M protein jumps by 25% and then 25% more and then goes

above a level of 0.5 so for example your 0. 2 right now as long as that number stays below 7 we don't have to do anything is you know they'll do imaging right routinely Etc but I would say um if it I hate for my uh sling but I say if it ain't broke don't try to fix it I'm from Ohio and I think that's the case with Myoma sometimes these days I think we do too much you know finagling of the treatments if you're feeling okay and you're you're active enough you had two transplants you're on a nice m

aintenance and your things are quiet just go with the monitoring to answer your question about when when can you access the CTI or by specifics cartt cell therapy is approved for four prior lines of therapy or more unless you find a well-designed clinical trial that will provide earlier access from 1 to three prior lines of therapy so if you go to um you can also I the clinical trials.gov is the website that I send people to to find out about clinical trials in their area again there is the um t

he cancer the Myoma um answer line that will be put in the chat somewhere and that will also help provide you the cancer I keep saying cancer the Myoma helpline um will be able to it's 452 cure um we'll be able to answer your questions perhaps about um accessing your area so good luck and I would be I would be happy with that 2m Spike sometimes it never goes away but that doesn't mean you're not in a really nice remission so stay positive um so um my dad was diagnosed with um monoclonal gammopat

hy in 1984 he's now 83 and was just told us he has Myoma his pet can's clear but he's not at an age to get boneo transplant he starts treatment next month he'll be on three medications I'm desperate for Hope um his blood on mice and shows that he has anemia I need to know I'm helpful um so what I advise is I said try to see if Dad will allow you um to be part of these visits so I had a patient in my office the other day and her family lives um in two different cities across the country and she's

in my area and I said how about we FaceTime them in you're here for the office appointment I'm going to share with you important information why don't we FaceTime them and just on these smartphones you can pull in the different um family members and connecting with that care team will provide you important information the three drugs are probably deram lenol lamide and dexamethasone and these are drugs that were um found to be effective and people that could not undergo stem cell transplant whi

ch is fine because it's a big deal and we don't necessarily need to do stem cell transplants in 2024 for everybody as we talked before when I was answering Terry's question but the the drd regimen from this Maya study show that people can go into nice deep remissions with this shot in a bell pills you take at home and um and some low doses of steroids that you can eventually get rid of it sounds scary but it's really kind of considered immunotherapy these days so it's not the traditional chemoth

erapy I have had patients on the drd study and many of them have been in their 80s and some of them in their 90s and these medications are generally very well tolerated we have to find the right dose or the right medication for the right patient so the Center that you mention that your dad is at is amazing and talk with the care team get dad's permission to be part of the the visits if that's something you're interested in but I know there is a lot of Hope especially because he's had MGA since 1

984 that's amazing that tells us that he's got probably quote unquote good type of a Myoma and should do well even though he's already exceeded a normal lifespan for a man his age we still hope that he can get some nice long good quality and quantity of life with this three drug regimen and don't go to Dr Google try to access the healthcare team I know so many great people at Ma at I'm sure they're very happy to help you um going on to Nancy Nancy says I'm getting ready to have a stem cell trans

plant and have some questions if they harvest my own cells aren't they also harvesting the Myoma cells too and injecting them into me that's a great question and I get that quite often when you think about how cells develop in the bone marrow you have these stem cells when they grow up they can be anything that they want the stem cells decide to become either what we call myoid cells on one side of the tree is how I picture it like a tree and that's where you can get people with certain types of

Leukemia and blood cell disorders or on the other side of the tree are your lymphoid cell line as you escape the bow marrow into the bloodstream you get your mature b cells your mature t- cells and the most mature b cells are the plasma cells the plasma cells as I mentioned their job in life is to make proteins called immunoglobulins that protect you from getting sick so when you're harvesting the stem cells way up here in the bone marrow you're not going to be getting the Myoma cells collected

through there the apheresis machine will will will take off just those stem cells will float to the top of that aphis machine and that's what put into a little baggie and Frozen with preservative so we can give them back to you now many studies from the 1980s on have said well maybe my Loma cell has been expressed on the stem cell clone and so that might be it but numerous Studies have shown the effectiveness of stem cell transplant in deepening remissions in Myoma and then it's you go on to a

maintenance phase afterwards so there's different studies that we can offer you and depending on where you're located geographically um to test different ways of doing maintenance in Myoma with newer drugs that are now available but the standard of care is a pill called lenol lamide which is offered to most people also called revlimid and so that will deepen any vermissing continue to keep things as quiet as possible so not so number one we don't think that your your Myoma will be harvested with

your stem cells it's just your stem cells and then number two there's more of an IM immunologic effect that occurs with that stem cell transplant and the Studies have shown that a transplants a good thing for many different people and oh my gosh is it really 727 oh my gosh these just fly by I got to go look at my question and answer and stop talking so much I could do this for hours thank you for bearing with me um what can happen if you're on zom and your calcium levels go up to 12 so zoma or

zonic acid is a medication that's intended to strengthen your bones it takes calcium from your bloodstream and puts it back into your bones the important part of the Z is that we used to give it monthly forever and then we found out that some patients had problems with their teeth um it didn't need to be given forever it can be harmful for the kidneys in high doses for long periods of time if you want to learn more about bone health and Myoma Dr Jen's hilling gas from um Roswell Park and I did a

program in November of 2022 on uh living well with Myoma so I would suggest to go watch that if you want to learn more about it um in the interest of time because it's almost 7:30 but if your calcium levels go high we like to say why is it high is it high because of the Myoma is acting up is it high because you have a secondary parathyroid problem so getting appropriate blood tests making sure you're not dehydrated and making sure that the Myoma is in remission cuz sometimes there needs to be a

change in the Myoma regimen to effectively control it so just like anything like high blood pressure diabetes your body gets used to the medications that you're being given sometimes you need to change things up with a different class of immune therapy or different class of drugs to get you back into a good remission where you can hopefully stay for a long long time and I think I have time for maybe one more question okay so let's see which one can I do quickly I mean everything looks so wonder

ful here and thank you Robin for putting things in the chat Robin tuy everybody yay Robin thank you for um being there as a support system um so okay I'll do one more Wanda says about to start second line treatment Dara rid de how effective is that drug if you are high risk gain of 1 Q only remain in remission for 13 months after induction and chose not to have a stem cell transplant although eligible Wanda there's um even you have high risks with a gain of 1 Q we know that there are medications

out there that can help the daratumumab anti- cd38 is a very effective regimen to control Myoma um there's other anti-d 38 there's a medication called isoab as well there have been some studies that show that that anti- cd38 um can help um control patients maybe a little bit better with the gain of 1 q but I think in general the Dera rev de is a really effective regimen and we talked about that with the with the um the the gentleman the older gentleman that had uh MGA since 1980s uh is now goin

g to be offered that it's generally well tolerated and I think just if you have one kyus clone sometimes your body doesn't behave high- risk it's taking the medication monitoring the disease and it's okay if you didn't opt in for a stem cell transplant because sometimes you can change your mind or get in a good clinical trial with a bfic antibody or c t- cell therapy so many people are concerned about um being in a clinical trial but I think clinical trials are a great way to get access to newer

medications you can get financial help with reimbursement for driving expenses sometimes um overnight Hotel expenses you get your own study nurse you get Advanced practitioners like me doctors a whole team of people that are oftentimes willing to help you as well so um gosh it's I'm over the time this is so much fun thank you for listening to me I think I have to close out now or I'm going to be getting into into trouble from the they're going to take over my internet um so I wanted to say than

k you now for our sponsors and I closed out the window that had my sponsors oh my gosh all these wonderful people that helped support us um for this event um you thank you so much for joining in to this event I hope you learn something um to help um hopefully you learn something that will help you help you um in your practice or with your friends or family I'm just scrolling down to say thank you to our people that um help support this where's our people that help support this I am the worst it

person in my life hold on um Jason sent this to me Jason I'm so sorry I actually was doing pretty well and then now I I screwed it up um oh pardon me for my French okay here we go my L action month sponsors I want to thank you and take a final moment to say Myoma action month sponsors 270 bio amen binding site bristle Myers quib GSK Karm therapeutic spiser regenerant regenerant and Safi we couldn't do it out without you and the generous sponsors please join in to Dr sanman and Dr Joe male I'm no

t um picking one or the other I I love them both I think they're both very knowledgeable and they're going to be doing the next Myoma action month Facebook live um if you have any questions until there's a cure there's the IMF go to mya.org and look at all the resources they have there for you um and thank you so much and have a wonderful day evening bye