GIST Awareness Day: Empowering Patients with Individualized Care

Darlene Dobkowski

Hello everyone, and welcome to today's live broadcast Educated Patient webinars GIST Awareness Day empowering patients with individualized care. I'm Darlene Dobkowski, associate editorial director for CURE. We are pleased to bring you this webcast presented by CURE and by our partner, GIST Support International. We have a few important announcements before we begin our third GIST Awareness Day webinar with our partner. We encourage you to ask questions during the event which you can submit by typing them in the q&a box. You will be receiving a survey via email tomorrow. As a thank you for watching the full webinar in completing the survey. You will be entered to win a Visa gift card. I am pleased to be joined today by panelists Dr. Gina D'Amato from Sylvester Comprehensive Cancer Center in Miami, Florida. Rebecca Ganzon, The Ohio State University James Comprehensive Cancer Center in Columbus, Ohio, and Ginger Sawyer, program chair of GIST Support International. Now, let us begin. So the first section of our webinar, we will be focusing on recent updates to the NCCN guidelines and what it means for patients. So Dr. D'Amato, can you go into a little bit more detail about the recent NCCN guideline updates?

Dr. Gina D'Amato

First of all, thank you so much for having me here. And I'm excited to talk to everyone today. And hopefully, we'll get some nice education out. So the NCCN guidelines have really, you know, slowly updated, but this year, the main focus of the NCCN guidelines was really to push that these that patients with just get their tumors molecularly profiled, meaning we want to look to see what mutations are abnormal in the tumor so that we can better guide the treatment. So part of that update was, first thing was that usually when we see the tumor, we want to remove it, right. And sometimes the tumor is very large, and we have to remove a lot of things. So if we can get the tumor smaller, what's called neoadjuvant treatment, when we the cure is surgery, but if we can get the tumor smaller, then then we can shrink it and and get it out much easier and lose a lot of important structures. So before the guidelines didn't have much to say about neoadjuvant treatment, because it really wasn't always fully recommended. But now that we know more and more where it was, it was advising that in big tumors. But if we're going to give treatment for big tumor, if we're going to treat with medication we want to have, we need to know the molecular status, the mutation status of the tumor. And so they updated that, and that we want to try to get a little bit bigger of a biopsy, when we initially biopsy it so that we can send the tumor specimen out for molecular testing. And then if because before we would just give everyone an imatinib, or Gleevec, I'm going to be using some of these words. Every drug has several names to confuse you and keep me in business. Okay, even though you guys are trying to learn on the internet, we don't want you actually treating yourselves on the internet. So I may use words back and forth the brand name and the generic name, so imatinib or Gleevec. So before then we would just give everyone imatinib, but we realize that not all everybody responds to Gleevec. So imatinib so it just updated that get the molecular profiling and it's OK, if you have a PDGFR Alpha DA42V mutation, you get avapritinib. It's an NTRK mutation, you can get an NTRK inhibitor SDH deficient Sutent, and so on. So really tailored more towards the molecular profiling.

Other things that they added that we've been finding more and more, we've been finding some BRAF mutations, which are more common in melanoma, but we've been finding that other cancers have that and there are two, there are a combination drug combination of dabrafenib and trametinib for that. So that was added. And then for patients that have already had imatinib, and either didn't tolerate or it didn't work, they built up some resistance usually. So we call that if it's if it's if we're trying to shrink the tumor.

For resection, we call it neoadjuvant treatment. But if the cancer is already spread, then we call that metastatic or first line so the first thing that we try first line would be imatinib. And then if it doesn't work anymore, or you don't tolerate it, you go on to what We call second line therapy, and second line therapy. The standard is Sutent, or sunitinib, but there was a recent study where ripritinib or Qinlock was compared with sunitinib, and it showed that they weren't equal and their effectiveness but that they were pregnant was a little bit better tolerated. So in the NCCN guidelines they said listen it for patients that have had that are on sunitinib or Sutent. And they're they're not tolerating it. Well, you can go on to ripritinib, because it's right, because it's approved for fourth time, but they're saying you can you can be started earlier. So that's the main thing. And then I believe it was already there last year, that for patients that were on reprinting them, and it doesn't work that on the once a day dosing that they can go up to the twice a day dosing. So those were those and all those updates were based on the data that were presented last year from the studies that were that have been ongoing.

Darlene Dobkowski

Thank you, doctor, D'Amato. Now, Becky, what do those updates to the guidelines mean for the care of patients with GIST?

Rebecca Ganzon

Yeah, so like Gina touched on like a couple of those big updates. I'm like a big focus on biomarker testing. And, again, it may be not last year, but in the last few years, there has been a couple of major drug updates. In 2020, we had two new FDA approved treatments that are now in the NCCN guidelines. One is that avapritinib, which he mentioned, which has been FDA approved for PDGFR Alpha, GIST, EGFR Alpha mutant GIST which were, you know, those are essentially de novo resistant to traditional first line treatment. So a big change for those patients.

And then fourth line treatment, FDA approved repritinib for fourth line treatment or second line for patients that don't tolerate sunitinib like she mentioned. So these are, you know, major changes just since 2022 new drugs, kind of three new indications for these drugs. This is huge news for just patients. And what I think this means for patients with just as you know, time, right? Just metastatic just is not a death sentence like it might have been in the 80s when we didn't have all of these treatments, just as one area one sarcoma that were really rocketing forward, and it's very exciting to see the research and the science unfold in our lifetimes, right, I think. I think imatinib was FDA approved in 2002. That was our first line treatment before 2002. We had no systemic treatments that were approved for for this for this diagnosis, right. And since 2002, now we have Imatinib, sunitinib regorafenib, avapritinib, and repritinib: five FDA-approved treatments and what that means for our metastatic or advanced GIST patients is time, we have a lot of treatment options to move through. So I think it's very, a very exciting time in the scientific community for just in a very exciting time for patients, because it means more life and more special moments with the family and community.

Darlene Dobkowski

Definitely important. Well, Ginger, what advice would you give to patients based on these updated guidelines?

Ginger Sawyer

Oh, there's so much advice in terms of hope. And based on what Becky was saying. You know, some of us have been dealing with just for 20 years, and or maybe slightly less than 20 years. But we have seen all of these advances. And it's wonderful that NCCN is communicating. In fact, it was it was very interesting that just this morning, I got an email from NCCN saying that the new just guidelines are ready for print. And you can you can order them up to 25 copies. So any of you patients who want to get copies, either the little handbook or the big handbook, go on NCCN website and you'll be able to order it and they're, they're free, and particularly for those of you who are those of us who may not go to centers of just excellence, may deal with community hospitals, you might order two copies and take one to your local oncologist and make sure that he or she has a copy of it. I'll just piggyback on that real quick. I agree. It's really important to what I do As exciting updates in the just community, keeping in mind that especially with repritinib, a few years ago, in 2020, there are some community practitioners that don't see much GIST they don't treat it on a regular basis. And the truth is, they might not be aware of those updates. So I think self advocacy is really key as well, for the patients that know, some of these exciting changes and to be able to bring it up to their providers in the event that, that their providers aren't aware of some of these changes.

Ginger Sawyer

GIST patients are very, very fortunate, even though we do have a, you know, potentially a life threatening or debilitating or our, it's not a good disease to have. But at the same time we're in so, so much better position, then, as Rebecca was talking and Jenna made reference to sarcomas. There are some people who have absolutely no, no hope, no opportunities, and those in there just community, at least, a high percentage of us have something that's treatable, and we're thankful for that.

Darlene Dobkowski

Doctor D'Amato, didyou want to include anything?

Dr. Gina D'Amato

For the NCCN guidelines, they have them for health professionals, and then they also have patient. So, you know, because I know, we have a comment here that, that we need to use layman terms, and I'm apologizing if I'm using medical speak, you know, it's sometimes I forget which words are English and which words are medicine. So, but, but what's nice about the NCCN, they have patient guidelines and for health care professionals, so you want to, you know, you may want one for you know, your community doctor for the healthcare and then one for you as a patient. And I think we'll, there's a question, we can answer the the website, but you just go to NCCN guidelines is pretty much fantastic.

Darlene Dobkowski

Was there anything else that anyone wanted to add to this? Before we move on to the next topic of our webinar?

Dr. Gina D'Amato

There was a question about define big tumor size? That's a good question. We don't have a specific what we would call big, we would just say that if it's touching an area that you'd have to have removed, but we don't want to have removed, we want to get it smaller. So some tumors can be if it's greater than five centimeters, one would consider that big, some would consider something set 15 centimeters big. So it's really the location and the size relative to how much it would need to be removed. And so that's what we're saying big, but it's not a define, like certain size.

Darlene Dobkowski

So moving on to the next portion of our webinar, we're going to be focused on what you mentioned, that was updated in the guidelines, which is individualized care becoming more prevalent, including the use of genetic and genomic testing. So Dr. D'Amato, why do you think individualized care is becoming more prevalent for patients with GIST?

Dr. Gina D'Amato

I think the more as you know, as we talked about, that, you know, just is now the most common type of sarcoma, and we're learning more and more about it. And we're really understanding the molecular, and the genetic process of what drives the tumor to grow. And so as we learn more and more, we can, we can now personalize it for for patients. So in the past, we knew that just had a mutation in the KIT gene, which led it to the receptors to be turned on the cancer cells grow, grow, grow, and we knew that imatinib or Gleevec stopped it and it worked in 80% of the patients. Well, what about the other 20%? Why didn't it work? And now we're learning more and more that it's not just the KIT receptor, their KIT gene, there are other genes that are causing just and we can target those. And so that's important, because in the past, we everybody starts with Gleeven, and then we find out we wait two months, does it we get scans, does it work? Does it not work? And then if it works, we continue. If it doesn't work, then we go to Sutent. And then we go to the lines of therapy, and so on. And but now we know that actually if we do molecular testing, that some drugs work and some drugs don't work, so instead of using what we what we did in the past, we can actually tailor it I'm too specific that patient, what the mutation is and what the best drugs are. And sometimes we can do that on clinical trials, we have a lot of clinical trials that we're exploring this is this really the best way, sometimes we just do it in the clinic. So it's really very helpful. Because really, we want, every patient is different. And we want to tailor the treatment accordingly. And now we actually have the technology, not all the technology, but a lot of technology to do that. We just have to get the word out to doctors that are treating just patients that this technology exists, and we need to be utilizing it.

Darlene Dobkowski

Now speaking of access to the test, Becky, is biomarker testing an easy thing for patients to access with regards to hearing about it from their doctor or even getting it insurance that covered by their insurance.

Rebecca Ganzon

Yeah, so I think it's one key. I'm like, asking, is it easy to access? I think, in many ways, yes, the key is, it has to be ordered by a health care professional. So a patient can initiate biomarker testing on they're just tumor on their own, but talking to your doctor or nurse practitioner, to get this process initiated. I know though, that there's a big, a big difference in different settings in terms of getting this done, right. I work in an academic, academic center, where all we do is see GIST and sarcoma patients all day. So like doing this biomarker testing a standard of care for all of our just patients. But I know that that is not the case, in all practice settings. I think the most recent data I saw was that only about 30 to 40% of just patients nationwide actually get biomarker testing. And only maybe about half of patients know what their biomarker status is or what the driving mutation of their cancer is. And I think that that really speaks to a need, right, a need to educate other health care professionals and need to educate patients to advocate for themselves to ask for this testing, if it's not been done, especially if the provider is talking about starting a medicine, or you're just then you should have biomarker testing done. So asking. And then how was it like, literally, how was it performed? There's a few different ways. One, I think a lot of institutions, bigger institutions can do an in-house test in their pathology department. So but that's a limited. So they are looking for specific mutations only. So I know this is kind of complicated stuff. But we know that about 80% of patients with just have a KIT mutation. And about 10%, five to 10% of patients with just have a mutation in a gene called PDGFR. Those are the most common two mutations. So most testing that's done in your hospital would be looking specifically to see if you have one of those two very common mutations. Now, if it doesn't show one of those really common mutations, then we usually send the tissue out to an outside company to get a white to cast a wider net, you have one of these wild type GIST one of these more rare mutations, that often requires a different treatment. And that can be a bit of a longer process. Most insurances, you know, insurances are pretty good about covering, testing the biomarker testing for just, if you're doing that wider panel I talked about that we call that NGS or next-generation sequencing testing is a medical term for that really wide net. And that can be kind of very costly. But I know that a lot of the companies that do that wider net testing, offer financial assistance patients based on your income level, based on your insurance coverage. So there's a lot of help, and there's a lot then there's also grants and things. There's a lot of help out there to accomplish that testing. If you run into any issues with that aspect of it.

Darlene Dobkowski

Now, Ginger, we have the opinions and what everyone thinks about individualized care from a medical standpoint or from a patient standpoint, why do you think it's so important and how can patients benefit from a more individualized approach to care?

Ginger Sawyer

It's, it's a function of time and money, it's potentially can grant people longer lives by knowing what their mutation is, if it's if you have a mutation, that is a rare mutation, and you're being given imatinib Gleevec, or one of the other first-, second-, third-tier drugs, you're wasting money and time, you're wasting insurance money, you'rewasting your life. So for the patient, it's very, very important. And we were recently at the New Horizons Meeting in Europe. And it was interesting that in Europe, a much higher percentage of the patients are immediately tested, then here in the states, and I found that quite interesting, quite surprising, quite frankly. But hopefully, with the NCCN guidelines, now promoting the mutation testing, and the further testing, I think that hopefully we can ramp up on those percentages. But again, it's a function of lifespan. And, quite frankly, even if the insurance companies, some of them are not real happy about the high cost of of paying for some of this additional testing. They're saving in the long run on the drug side. So it's, it's a win-win for everybody that way.

Darlene Dobkowski

Definitely a good point. Did anyone have anything else to mention about this topic before we move on to the next portion of our webinar?

Rebecca Ganzon

This just kind of agree I'm like insurance companies are doing the biomarker testing. We're saving money on drug in the long run and money on patient care, right, because we know that there's a strong correlation. We know that patients whose disease is controlled on the appropriate medication, do better and live longer. That means less hospitalizations, fewer complications. And that's something that we should all care about. And like ginger said, I'm like, make sure that biomarker testing helps to make sure that we are putting you on the right medicine the first time around, which is crucial.

Darlene Dobkowski

Couldn't agree more. So the next topic that we're going to be focused on now that we're on the topic of medications and treatments is side effect management. So Dr. D'Amato, what are some of the common side effects from GIST treatment?

Dr. Gina D'Amato

Well, so each medicine that that patients are on have a little bit different set of side effects, and then there's also the side effects of having the GIST and so sometimes, you know, it's hard to tell, which is for coming from the tumor and the cancer, which is coming from the treatment, but for the most part imatinib, or Gleevec is the most common so we'll start with that. Some of the side effects can be some nausea, diarrhea, and fluid retention, meaning swelling in the legs and some even fluid in the lungs. And it can also affect your liver function. So we do have to monitor very closely the liver function and your blood counts. And but a lot of the side effects most of the side effects actually can be treated with other medicines. So you may think they you just have to take one pill of Gleevec, but you actually have to take four pills along with it. But it can counteract the side effects. So we have nausea medicine to counteract the nausea, diarrhea medicine to counteract the diarrhea. So you may be on it and you think "oh, well, this is a normal side effect. I should just be living with diarrhea and not enjoying my life and hiding out because I'm afraid of accidents." That's not right. Because we have four levels of diarrhea medicines that we could start you out with Imodium and then three prescriptions. So you and some patients just have to take it as a preventative or just have those diarrhea medicines around. So we don't think a normal bowel movement. You know, couple of times a day is okay. We don't want people having any accidents and we can control those. Some of the other things we can get some leg cramps which we can give some if you drink lots of fluids. I tell patients to look hydrate, hydrate, hydrate, look at your urine. If it's not light yellow, or clear you're not drinking enough. So and then you're supposed to drink about half your weight in ounces. So if you weigh 100 pounds, 50 ounces, if you wait 200 pounds 100 ounces of fluids, that's if you're just resting if you're very active, you need more. And then sometimes you can retain some fluid. And we can give you a little water pill to help you with that. So that's for imatinib,

For sunitinib and regorafenib or Sutent, and Stivarga, they have a little bit different side effects, where you can get elevated blood pressure. So we do have to watch that closely. And a lot of patients have to be on blood pressure medicines, and they can get what's called hand foot skin reaction, where you can get peeling of the hands and feet, we recommend that soon as you're on the drug before it even starts, that you use urea-based creams ... one of them that we use is called "Utterly Smooth." It's like little cow, and you put that on your hands and feet twice a day to prevent it from happening. And then if it does, if you do develop the sores, we stop the medicine and lower the dose. And usually with those medicines, especially the Stivarga, we start out low dose and go up just to make sure that patients aren't experiencing those side effects.

And then ripritinib, he newest drug one of the newer drugs, or also called Qinlock, has not as bad side effects as far as blood pressure and fluid retention and diarrhea. But it can have some skin, hand foot skin reaction and some thinning of the hair and even hair loss when they did a big study about did that affect patients quality of life, the the thinning of the hair that coordinated the patients it didn't affect their quality of life because their tumors were under control. So it didn't really bother them.

And then the last drug that's approved, avapritinib, which for a small set of patients, ... similar side effects to imatinib and at but there are some patients that can have some cognitive effects meetings, you can get some confusion, some memory issues. So we really monitor those patients very closely for that. And if that does happen, it is reversible once you stop the drug and we can have some other treatments for you.

Darlene Dobkowski

Now, Ginger, what type of side effects did you experience while on treatment? And did they impact your quality of life?

Ginger Sawyer

I had some rare side effects. I had, as Dr. D'Amato mentioned, to monitor your liver? Well, yes, my blood work showed that I had severe liver toxicity. And it took approximately 18 months for me to be able to be on Gleevec, having been on steroids, massive doses of steroids to shock my liver to bring it into to a position that it would allow me to take the Gleevec, but you're almost 18 years later, I'm I'm still taking the full dosage of 400 milligrams of Gleevec. And all my liver levels are normal. I have puffy eyes from the edema. I don't have any of the side effects of the initial side effects of of rash occasionally have to watch what I eat as it relates to bowels. But it does not affect my quality of life. But it's more difficult for the first and second year of that patience going through this once you get through that first couple of years the side effects. I won't say they go away. But they minimize and and you're a lot more comfortable with them. And that's from the that's from the Gleevec perspective. I haven't I haven't taken the other drugs.

Darlene Dobkowski

Fair point. Now, Becky, do you have any advice for patients when it comes to the side effects with any of these treatments for just?

Rebecca Ganzon

Yes. So when I think about managing patient side effects, I think and of course this program is built on mostly for patients. Right. So what How can patients advocate for themselves and what do I think is important here? I think the first thing that's very important and that I always try to do in my practice is before starting a new medication, have a very in-depth discussion with your care team about what is normal and what is not. What are the common side effects. There are always outliers, right? It sounds like unfortunately, maybe ginger was is one of those patients where she had really extreme liver problems on imatinib. There are always patients that will sometimes have more extreme reactions than the than the norm. But I think it's good to go in with your eyes wide open. These are the very common side effects like Gina talked about, like, I am going to expect that I might have some swelling and some blood pressure issues. So you know what to look for. And to try to discuss with patients before we start the medicine, how can we manage them? The truth is, sometimes it's a lot of information and it's can can be overwhelming for the patient, I think. And sometimes we say it, but it might not be hurt, or you might not remember until that thing actually comes up. So I like to tell patients, hey, if you get diarrhea have Imodium on hand, but they might not actually remember that or they might not have it on hand until it happens, right. So I'd say number one education and trying to just be aware of what to look for and trying to prevent the four things happen like hand foot like lotioning your hands, avoiding things that we know can increase the risk of that happening. But two is really close one monitoring by the care team, and to communication with your care team. So I think it's a good practice, when you start a patient on a new medication, most of your doctors will probably want to see you two to five weeks after you start that new medicine to see, you know, are you doing OK? Are you having major issues that we didn't anticipate and that we need to adjust for. So usually, we monitor people a little bit closer up front when they start a new medicine. And then once we know you're up and running, and you're doing good cruising, those visits become less frequent. And to that open communication, if you are having side effects, you need to reach out to your care team. The worst thing for me as a nurse practitioner is not hearing anything from my patients. And then I see them four weeks later. And I find that they've not been walking for two weeks because they are blistered and so painful. And it's such a shame because we could have intervened sooner. I I think I speak for all doctors and healthcare providers. When I say please reach out, I'd rather reassure you that it's normal, that it's fine, then find out that there was something major going on, and we didn't know about it at the time. Because like Gina said, we have a lot of different ways to manage these side effects. They're almost always manageable with you know, lifestyle adjustments. Like for example, for hand foot, like avoiding hot water, like dots of merging your hands or conducting water, using the lotion, things like that. So often we wish lifestyle changes as well as medication management, like prescription medicine, sometimes for nausea, swelling, and some of those other common side effects. We were pretty good at guiding patients how to manage these side effects is to tell us that they're happening. And then I guess the last resort, which was kind of touched on but I'm like, you know, we do our best there are people that have really, you know, I can't sugarcoat it. The truth is a lot of people do well, but there are some patients that have really severe side effects. And in those cases, sometimes we hold the medication for a week or two, that side effect improve. And then we either we challenge or sometimes we have to reduce the dose of the medication. Because we're always trying to balance disease control and quality of life. We don't want to have with these controls, but you can't walk or feed yourself because you're having so much pain or not. Right so we have to sometimes dose adjust to balance those two things out.

Darlene Dobkowski

Definitely good messages now. Ginger, were you gonna see something or was I'm sorry.

Ginger Sawyer

I was going to add I didn't mention cramping. Cramping news is a popular complaint. And I wear big, full, fuzzy wool socks to bed. I keep my feet from cramping at night. And I'm really careful when I'm driving not to have my hands in front of the air conditioner because my fingers want to cramp around the steering wheel. So just various things that you can you learn as you as you go through this process.

Darlene Dobkowski

Good point. Now moving forward. Obviously we've talked a lot about education and the importance of it now. Ginger, where can patients and caregivers educate themselves on advanced GIST?

Ginger Sawyer

Well, advanced GIST is it's a little bit different than just the the newbie patient of people who have gone through the various stages of just development in the treatments and the testing. Fortunately, as as either Jane or Rebecca, Becky said, about 80% of the people respond to them just patients respond to imatinib. But there's that other population that does not and that's that's the group that we are so very concerned about being the outlier population, and what do we need to do to promote the research necessary to try to find drugs that will be appropriate for those various mutations? There's a with with some of the mutations yes, we're starting to see see drugs being developed. But there's more and more. And that's the reason that GSI as of today for just day of learning, is getting $100,000 grant to Dr. Heinrichs clinic are two new projects that he's got for SDA for the various identification of some of these outlier mutations. This will follow one that we did two years ago for University of San Diego so we continue to want to support the research for all of these solutions for everybody.

Darlene Dobkowski

Now this is kind of a question for both Dr. D'Amato and Becky, so what should patients keep in mind when looking for information, especially on the internet about GIST?

Dr. Gina D’Amato

Right, we all know that the internet is a blessing and a curse, right? So there is, you know, we have access to the world at our fingertips if we know what to search for. So I would my best advice for patients looking for information about just about advanced GISTon the internet. Primarily try to stick with reputable evidence-based websites. And what does that mean? How can you tell I'm like sticking to the you know, the website's like, you know, the guidelines NCCN guidelines, just to support international like these large groups that are, you know, are sharing evidence based information. Life Raft group is great for just patients, looking for clinical trial information going to clinicaltrials.gov. It's a government website, or NCI, the NCI National Cancer Institute, these very large, renowned institutions where you know that that information has been vetted. And it's reliable. Also an excellent resource that I think is probably underutilized. For patients, the drug websites, the drug manufacturers have websites about these medications. And they have a provider side and a patient side. So you if you're starting Sutent, and you don't know what to expect, or you don't feel like you've got that quality education from your care team, and you want to do more research on your own, go to that drug manufacturer website and read the patient information that they have about the drug. It can give you some ideas as well.

Darlene Dobkowski

I would caution patients. I know there are great support groups out there and like different social media platforms that have support groups are patients with similar diagnoses, but I caution patients especially up front, about those groups, because sometimes there's misinformation. Or you know, or people don't realize that they're comparing apples to oranges. Comparing how somebody with a kit mutant just does on a magnet to a patient that has a wildtype GIST because not comparing apples to apples. And not only that, even if it's the patient, you know, to patients with the exact same diagnosis, we might have different other health problems. They might be different ages, different genders, and therefore they might have different experiences. And I think that the adage is true, just like in, you know, in other areas of our personal life, right, you tend to hear 10 People tend to blast, bad experiences, go to a restaurant and fantastic experience, you may or may not share that you go to a restaurant and have horrible experience the worst dinner ever your last bet everywhere. So I think when you work group tight, sometimes you hear the word, the word, patients that have really unusual complications can be frightening in your life, like, oh, my gosh, what is gonna happen? And keeping in mind, they're not necessarily doctors or anything.

Dr. Gina D'Amato

Yeah, I mean, it's, it's true, because it's like, I like the websites. And I like the support groups, because they, they do educate. And, you know, they'll say, oh, go to see, like, I've had a lot of patients that have come to me from support groups, but which is good, of course. But, you know, a lot of times when patients are doing well, they feel guilty to post it on the support group site, because they don't want to, like rub it in people's faces. And they, and they're, and they're busy with their lives. So so then you kind of get a skewed view, and you don't see you see more of the bad because they're looking for help. But without it, you know, we can't, we do need to educate patients and using the internet is very effective, as long as we're, it's a controlled situation and, and we're getting it from reputable sources like GSI just support international life ref and whatnot. So you know, that that's, that's important. If you're with a doctor that sees GIST patients all day long, as an expert, you don't even really necessarily need to go on the internet looking for information, you can ask your doctor, if you're with the community doctor that doesn't see just patients all day long, then you know, that's when you kind of really need to educate yourself, or ask your doctor if they can refer you to adjust expert, which point you may not you know, maybe your insurance doesn't cover it, but there's support groups for that where we can do you can find a an opinion or, and a lot of times if I just see the patient once and then I can work with that with that doctor, their their regular doctor, you don't have to come all the time. far. I've been drinking all my water.

Ginger Sawyer

Just comment on that. Another comment on that too, but what Gina was saying about feeling guilty. But that's not all bad. Because I know when we I talked with new patients, and I tell them I'm a 20-year survivor. It's almost as if there's a light bulb that clicks on and they're they're given some hope they're glad that people are surviving. And and if you are if you feel like you're relegated to a community hospitals simply because of finances or, or distance from a hospital GSI does get grants for second opinions. So if you need a second opinion, go to the GSI's website and and apply for a second opinion grant. And we'll help you for a fun that trip over to the the center of cxcellence for whatever just specially hospital you would like to go to.

Darlene Dobkowski

Sounds like a great program. So now let's jump into the audience q&a. We got quite a few questions coming in from the audience already. The first one is kind of a three-parter. Can GISTtumors recur many years after the original initial one? Can CT scans without contrast pick up tumors and how long should a patient take oral chemo after removal of tumor?

Dr. Gina D'Amato

Okay, these are a doozy. All right, so I'll just go ahead. Yes, just can recur many years after the initial one. Typically, if they're going to recur, they will recur in the first five years and that's why we do surveillance scans every three months for two years every six months for two years and then yearly, even up to 10 years. So we do monitor but again, mostly it's in the beginning but it can happen. Do CAT CT scans with out contrast pick up tumors, it can in the abdomen but it's difficult to see it in the liver. So if you're allergic to contrast, in the CT, you can get MRIs, PET scans, we don't typically do them for surveillance. But if you have metastatic disease, and we're looking and you can't get a CAT scan with contrast, MRIs or or PET scans, but you're not going to see anything in the liver without a contrast.

And then how long should someone take the to oral chemotherapy after removal? Which oral chemo would be a targeted agent like a magnet after the removal of the tumor? So that's a good question. It's based on three things: the size of the tumor, the mitotic index, which is how many cells are growing and dividing under the microscope, that's determined by the pathologist and the primary location. Okay, so did it start out in the stomach to start out of the small intestine did start out in the rectum or the esophagus, and then we can use a formula, using that to predict the chances that it can come back. And if the chance is very high, we keep you at least three years, some keep you on five years, some we say indefinitely, if it's super duper high. Other times the standard is three years. But again, it has to be a discussion with your oncologist. Because some studies are showing five years, but also we don't want to over treat if you have a lower chance of it reccurring. We don't want to give you too long of treatment. Because you know, the the risks of side effects outweigh the benefits. So it's a it's a, it's a good discussion with your oncologist based on those three factors. If at the time that you had the surgery, and it's already spread, then and but they got it all out. But it looks like it spread to the liver or into the intestines or it ruptured that or if it's in the small intestine, it's quite large, we usually keep patients on indefinitely.

Darlene Dobkowski

Thank you, Dr. D'Amato. So our next question is with molecular testing levels so low, what is or can be done to educate providers to order the tests?

Dr. Gina D'Amato

This! We GIST experts trying to take any advantage of trying to educate doctors and patients. So programs like this, which we thank here for putting on and GSI for sponsoring this, you know, just getting the word out, it's been a challenge for for us to be able to educate people. But you know, if we, if we can, if we can spread the word, I think getting it on the NCCN guidelines will be good. So that those doctor, I think that is going to be key to getting the word out. But yeah, it's been a challenge.

Rebecca Ganzon

I agree. I think education is the key. I wish there was an easy way to just blast it everywhere. But yeah, just the conversations like this.

Darlene Dobkowski

It's kind of an interesting question from the audience as well, is there a relationship between patients who have GIST and are also BRCA2 positive?

Dr. Gina D'Amato

So, so we have when we test tumors we test for we test on the tumor if they have a specific gene mutation. But if you have a lot of cancer in the family, then we test for hereditary would test your blood or your saliva to see if you have a hereditary mutation that made you susceptible to cancer. So just tends not to be one of those hereditary, but as we're sending more and more patients for having their tumors tested and to the genetic counselor. For for germline, we call that germline testing, which means hereditary means pass on from your parents, we are seeing some associations. So it's rare, but it's not surprising that if you had a BRCA2 mutation that you are susceptible, you can be susceptible to to GIST tumors, it would be interesting to see the if the GIST tumor had the BRCA2 mutation or, and because if that's the case, you may be eligible for some additional treatments if your current treatment isn't working.

Darlene Dobkowski

We're getting a lot of questions about testing. So it's molecular testing different than mutational testing after surgery?

Dr. Gina D'Amato

It's similar. So it's similar. So basically, when we, you know, again, every every drug just like every drug has several names to confuse You, every kind of tests have different names, right? So we have mutation testing, molecular testing, next-generation sequencing, or NGS, those are huge. Those are basically used interchangeably. When we do molecular testing, we are looking for mutations in the tumor, to help us figure out which treatments are best for you. So, after the tumor has been removed, anytime before you start on a treatment, we want that tumor to be tested. Now, sometimes if you if you have the tumor removed, we can test the actual tumor specimen. But say you have some tumors in your body and liver, and it's getting worse, it's already spread, you're on a mountain and it's getting worse. And we then we would have to biopsy that specific liver. Sometimes we don't want to put you through another biopsy, we can do some liquid biopsy we call liquid biopsy, or it's actually a blood test that we can see it in the blood test. It's not as accurate as actually testing the tumor. But it can give us some information. So we say molecular testing, mutation, mutational testing, next generation sequencing or NGS, they're all used interchangeably.

Rebecca Ganzon

biomarker testing

Dr. Gina D'Amato

biomarker, anything that says testing Yes.

Rebecca Ganzon

One thing I would add, because I'm not sure if this is where that question was pointing to or if I'm off base, but in terms of the terminology, yes, it's the same. But there can be a difference between testing at initial diagnosis and testing, after you've been on treatment, or after, with progression, right? We know that with just cancer, you can develop secondary mutations, or, you know, the cancer can kind of adapt and change. So it's very possible that a patient and conditionally has one mutation. But as the cancer progresses, or shows up in other areas, if we were to biopsy that second area, that might have different results, that the biomarkers or the molecular results might be different on that second lesion, or that progressive lesion. And we call those secondary mutations. And that's one direction in which research is going as well, oh, they're finding that certain patients with, you know, multiple mutations or secondary mutations do better on certain medications. It's still an area of being developed. But I wanted to make sure I mentioned that unlike your initial results, your initial testing and evolve over time as the disease progresses and is exposed to different medications.

Darlene Dobkowski

So another question you have is, would it be wise to have my oncologist refer me to a GIST specialist?

Dr. Gina D'Amato

Yes. Sow if you had, you know, you're just removed years ago, and you're on surveillance and it was a low chance of it would coming back you probably don't necessarily need to see it just expert. But if you recently were diagnosed with just or you're currently undergoing treatment for just and you're not with GIST a specialist, it would be good to to have your oncologist refer, and we don't try to steal patients, we could make an opinion and then we can work with your oncologist to make sure you're on the right path.

Particular particularly important, I would say with advanced just or metastatic GIST right because it's it gets more complicated. As the disease is more advanced. And community providers may see just a handful of patients per year or in their career, like their entire career. Two or three, right? Then those might not have metastatic and I've seen people come for second opinions to their college maybe made different decisions we would make especially if you know or they may discontinue a medical earlier than maybe would have recommended especially medicine metastatic and you're moving past that first line treatment specialist

Dr. Gina D'Amato

Okay, I think we maybe lost someone but we can keep. Yeah, we can keep going. We can read some of these. I think is it possible to do develop side effects after having done our Gleevec effects? I mean, I think that it's possible that you can, over time develop some side effects. But I think you probably want to make sure that something else isn't going on besides blaming it on the Gleevec. Maybe we can ask ginger if she developed new side effects after being on it for a while or it's been the same on have they got better or worse?

Ginger Sawyer

No, I did. I didn't develop any I haven't developed any new side effects. But one thing that I have heard more about over the last couple of years is that patients who are just patients, potentially, because of either some of their family issues, genetic issues might be more susceptible to other types of cancers. So vigilance on the patient's part, as well as communicating with the doctor needs seems to be new, I think would be really important. It may have nothing to do with his chest or the just medications. But it may be something totally unrelated.

Dr. Gina D'Amato

Yeah. And then I think we have is cancers ability to change with treatment unique to just or it's normal in all cancers. It is normal in all cancers. But what's unique about Jesus is that we are better understanding why it's changing, because we're looking at the molecular, we're looking at the mutations, and we're better understanding it in other cancers, we don't have so much sophistication. So we know probably it's build some resistance to treatment, but we don't know why. Whereas in just we can actually test and we can see different mutations have formed. So, so it's it's really promising and because the more we know, the more we can target

Darlene Dobkowski

Correct me if I, if this has been addressed already, but can you discuss the role of necrosisin GIST and how it affects treatment.

Dr. Gina D'Amato

So I think necrosis means dead. So if a cancer is growing very fast, it will die in itself, it will die on its own. And we can see that if we get a PET scan, and you could see areas lighting up and then inside there will be dead. Also, if the cat if the treatment is working, it will die. And it will be necrotic. And so sometimes someone's on treatment, and their tumors may look like they're getting bigger, but it's all dead inside. And it's important that the radiologist recognizes this because sometimes they'll just say, Oh, the tumors bigger as the treatments not working. But really, it's because it's dying from the treatment called necrosis. And the treatment is working. And we can tell the difference between that if we get a PET scan, oh, because we can see is there activity around it or not? I don't know if that answered your question or just made you more confused. Hopefully not.

Darlene Dobkowski

I just wanted to see if anyone else had any other comments that they wanted to make before we start winding down since we are one minute away from finishing up our webinar.

Rebecca Ganzon

No, I think this has been a great webinar with great webcast. I'm so so pleased that we were able to participate in it and and work with the health care professionals who really know their stuff. It's, it's it's great to have, have them join in this, this effort and, and thank you very, very much for everybody who's participated.

Darlene Dobkowski

And thank you very much, but unfortunately we are out of time. If you'd like to watch this webinar. Again, it will be available on the Webinars on demand page of curetoday.com within the coming days. I wanted to thank our panelists and the audience for attending. in participating in today's event, I would also like to thank your and our partner just support international for making today's educational webcast possible. Don't forget to check your email tomorrow for the survey to be entered to win a gift card. Thank you all for joining and we'll see you next time.