View the full CURE® Educated Patient® Webinar: Gastrointestinal Stromal Tumor (GIST).
Ryan McDonald: Hello everyone and welcome to today’s live broadcast, a CURE Educated Patient Webinar in Gastrointestinal Stromal Tumors. I’m Ryan McDonald, Associate Editorial Director for CURE. We are pleased to bring you this webcast presented by CURE and in partnership with Deciphera and GIST Support International. There are just a few important announcements before we begin. We encourage you to ask questions during the event which you can submit by typing them in the Q&A box. You will also be receiving a survey via email tomorrow. As a thank you for watching the full webinar and completing the survey, you will be entered to win one of three Visa gift cards. And now, I would like to introduce you to those who will be leading today's discussion. We are pleased to be joined today by our moderator, Ginger Sawyer who is a Board Member and Treasurer of GIST Support International. Joining Ginger will be Melissa Hohos, a sarcoma and bone oncology clinical research nurse at Dana-Farber Cancer Institute. As well as, Kathy M. Polson, a sarcoma and bone oncology clinical research nurse at Dana-Farber Cancer Institute. And Molly Finger, a sarcoma medical oncology nurse practitioner at Moffitt Cancer Center. Thank you again for joining us today and I will now pass things over to Ginger Sawyer to begin the discussion.
Ginger Sawyer: Hello everyone, particularly to GIST patients and their caregivers who might be joining us today for this CURE webinar. We've been asked to address several important questions for old and new GIST patients, but I think many of them will be particularly important for those of you who are among the newer members of our GIST community. And I'd like to start off with the various professionals asking them about the treatment at their various cancer centers and the importance of working through a cancer center that is a GIST specialty center. I know from my personal experience I was not initially treated at one but I was later. And it makes a lot of difference, particularly for those of us, in the first place, don't know we have gastrointestinal stromal tumor. So, Melissa, would you like to kick it off and then we can go around and talk with Molly and Kathy and see what they think.
Melissa Hohos, RN, BSN, OCN: Thank you so much Ginger. And welcome everybody and I'm so pleased to be here today to answer any of your questions. So, because of the rarity of GIST, I think it's so important to have a good pathology review and pathology testing. It's so important and encouraged to be seen whenever possible and consulted by physicians who have experience in GIST. They should be providing your care, giving you your treatment recommendations and it's also normal to see a surgeon or a radiation oncologist. And GIST cancer specialty centers will have, [00:03:00] because clinical trials is my strong point, they may have a more robust clinical trial portfolio and they may have better expertise and more access to newer drugs that patients can be treated with that have GIST.
Ginger Sawyer: Kathy or Molly?
Molly Finger MSN, MPH, APRN, FNP-C: I just – Kind of exactly with what Melissa had mentioned which, when you think about GIST, we know that on average per year about 4 to 6,000 people are diagnosed with GIST every year in the United States. And so, that's a pretty small number. And so, again, to piggyback on what Melissa had said, when you think about the rarity of this type of cancer, oftentimes a community oncologist is not going to have a significant amount of experience diagnosing and/or treating this particular diagnosis. And so, the reason why we recommend, not just because we work at sarcoma centers or centers that are specialty centers that handle GIST, but we recommend it because we know that the outcomes for patients are better. As Melissa had mentioned, clinical trials become an option and we just see better outcomes as far as management and treatment of those patients. So, I would encourage it because we see the great things that happen. We know that, again, patients do in the end benefit from specialty centers that have experience treating patients with GIST.
Ginger Sawyer: I know that there's a – Most of the specialty centers do also have multidisciplinary approaches. How does that work with GIST specifically within your institution? Molly, do you want to talk about that?
Molly Finger MSN, MPH, APRN, FNP-C: I think, again, the benefit of having a multidisciplinary approach is that we can treat cancer from all different angles. So, patients that are diagnosed with GIST may require surgery and/or some sort of systemic treatment, most often with an oral therapy. But in addition to that, some of the things that we think about, of course, there are some dietary changes that can happen. So, I love the idea of having a dietitian involved in the care of my patients. Also, someone as far as social work, because there are certainly challenges that arise outside of the medical realm that do require some assistance. So, again, thinking about the patient outcomes. Ultimately that's why we love this idea of having that multidisciplinary team because we get the patient in front of everybody at the same time, come up with a plan together that is best and individualized to that patient so, again, that we can ensure that they have the best outcome possible.
Ginger Sawyer: And along the same lines, the patient himself or herself also has to [00:06:00] participate in the seeking of treatment that would be very special to their own personalities. And then they need to also become their own advocates. So, it would seem to me that the multidisciplinary approach would be very helpful in helping in creating these patient advocates and perhaps also the caregivers. How do you focus on developing the patient in terms of advocating for himself or herself? Melissa, do you have thoughts on that?
Melissa Hohos, RN, BSN, OCN: Can I just make one note about the multidisciplinary care, just because I think it's an important note because I think it's consistently overlooked. The importance of having a primary care physician involved in your care, even though they don't have the expertise in GIST, a lot of my patients travel from all over the United States. And sometimes it's difficult when they call, and especially during the COVID times where we couldn't see them. And it was so important to have their primary care involved in their treatment or care so that they could be evaluated and was seen urgently and acutely. And then that person really knows what's going on so that they can see the patient faster, fast. And they can be such an important aspect to a patient's care as well. So, I don't ever want to ever overlook the primary care physician because they can be so helpful in getting approvals for insurance and things like that because that's what they are expertise in doing. So, I just wanted to note that.
Ginger Sawyer: In many instances that primary care physician is the one that was involved in the initial diagnosis before they ever came to see someone in a GIST center. So, it's very important also.
Melissa Hohos, RN, BSN, OCN: Yes. And so, to answer your question about how they become their best advocates, not being afraid to ask questions, seeking support from GIST specific support groups, also seeking second opinions because those can be valuable as well. Seeing a patient at a couple of centers can open up more treatments, more clinical trials. So, anything else, Kathy, that you'd want to add to that?
Kathy M. Polson, NP: Yeah, I agree with everything you said Melissa. I think that the patients come and we work as a team with a group. It's often a conversation between the medical oncologist, the surgeon, the patients and the nursing team can be all very helpful as a group to make the best decisions for the [00:09:00] patient. And many patients come to our visits as a second opinion and we're able to work together with the patients and feel – Work with them to find the best treatment plan for them. And a lot of times patients will bring that plan home with them because many live a great distance away. And in addition to having a great primary care, many have a local medical oncologist, someone who kind of follows them on treatment until things change. We work in many different ways with patients to make their life more comfortable for them to be in their environment and not going back and forth as frequently. And then we have patients who choose to come here for all their care and their PCP at home. So, we work together with the patient to help them find what works best for them.
Ginger Sawyer: Melissa, I believe it was you in your initial statement, you made reference to mutational testing. And I know that as the GIST research has developed over the past 20 years or so, a great focus has been, over the last year or two, a focus has been of the advocacy groups that mutation testing is extremely important in the care of the patient. Can you give us some – Melissa, go ahead and give us a background on mutation testing and why you and your institution feel it's so important.
Melissa Hohos, RN, BSN, OCN: So, just basic knowledge of cancer and growth. Effective proteins that can be found on the cancer cell drive many types of cancers. And we know that GIST, that is the most common either diagnostic marker, this is overexpression of a mutation that can happen, overexpression of a protein. So, when these GIST cells carry these mutations in their genes, they will make abnormal forms of what we call, KIT and PDGFA, which the most common mutations found in GIST. And when they make these abnormal proteins, it promotes cancer growth or cancer spread. So, it's extremely important that patients get their tumors pathologically tested so that we know how to treat them correctly. Certain mutations are going to drive what we offer as therapy. I didn't know if you guys wanted to chime in on more, Molly or Kathy.
Ginger Sawyer: Molly?
Molly Finger MSN, MPH, APRN, FNP-C: I think again, Melissa had pretty much covered the general [00:12:00] background about this. So, again, knowing the mutations that exist for a particular patient do help us as far as directing therapy. It helps us to understand duration of therapy. It helps us to understand behavior of particular tumors. What do we expect to see in terms of how long might you be on a therapy before you develop some sort of resistance or what is the likelihood of developing resistance? And so, that mutational information or that mutational testing is really a foundation for our group, and I think across the country, as far as how we treat GIST tumors in terms of identifying the correct treatment. And then as we move the process and understanding duration and sequence of treatment. So whether or not we say, let's do some sort of systemic therapy first before we do surgery. In other cases we say surgery first and then treatment. So, all of those things are very important for patients and for providers to understand as we get started and as we move along because we also know that as patients are on therapy for quite some time, not only does it tell us about the mutations when we initially get diagnosis, but we also know that mutations can occur beyond once patients are being treated. So, within a tumor they can develop additional mutational changes. And so, again, that helps us to understand how we continue with therapy over time.
Ginger Sawyer: One of the things from the patient perspective as it relates to mutation testing and the therapies that you give us patients, we do want to have a proper therapy for our particular mutation. And in many cases, or I won't say many cases, in some cases there are individuals who are given a particular therapy that really doesn't have any opportunity of working. And it's better for the patient not to invest [AUDIO SKIPS] a particular therapy when it's not going to work. And we appreciate the fact that do the mutation testing and we're really encouraging it. When a person is going through mutation testing, give us a little bit of information about how you proceed with that. Is the testing done onsite or how do you send all of the lab results to an outsource? How do you take care of that?
Melissa Hohos, RN, BSN, OCN: At Dana-Farber, we do mutational testing here in our pathology lab and for our GIST patients. And we also do additional testing when patients undergo surgery. Some of our patients that come from the community, some community hospitals don't have mutational testing for GIST and they will come in with a Foundation report from Foundation Medicine [00:15:00] which is like a contracting site that does mutational testing and genetic testing. That's basically what we do at Dana-Farber. We do our testing onsite. I'm sure Molly, at Moffitt you do as well.
Molly Finger MSN, MPH, APRN, FNP-C: So to your point, a majority of our patients, if they're coming to see us as a second opinion, then oftentimes they've already had mutational testing done. So, sometimes it may not be something we would have necessarily ordered here. But as you mentioned, Foundation One testing or other types of mutational analysis that are done centrally outside of Moffitt sometimes are used. But yeah, it's a pretty similar process and so either we do it here as we're working up a patient with a probably GIST diagnosis or the patient comes with that information. But it's usually pretty straightforward and the only downside is sometimes the wait for patients. That sometimes can take a couple of days, if not a couple of weeks depending upon who's actually conducting the review of that mutational analysis. So, that's the only real downside that we hear back from patients.
Ginger Sawyer: One thing too in terms of the treatment that may be given, my understanding is that there are some therapies that are used perhaps to shrink a tumor in advance of surgery in order to make it easier for the rest, for your surgical team to remove the tumor. And how – Is there any impact from the therapy itself on the mutation or is that something that's pretty straightforward? When, say if you're treating with imatinib prior to surgery in order to reduce the size of the tumor, do any of you deal with that or is that strictly managed by your surgical team?
Molly Finger MSN, MPH, APRN, FNP-C: Again, I think this is kind of what we had alluded to earlier. There is definitely a multidisciplinary approach. So, at Moffitt, we typically are communicating in real time between surgical and medical oncology groups. And so oftentimes patients will come in initially and they'll be seen by our surgeons to evaluate necessity for surgery. And then we determine, again, the appropriate approach, whether it be surgery first followed by systemic therapy or whether or not we choose to treat systemically to, as you mentioned, shrink the size of the tumor and then provide for a little bit less risky procedure for the patient. As far as what are the effects on that for the patient, of course, the only thing we think sometimes with imatinib can be some wound healing delays. So, sometimes we have to stop with that, the imatinib, before we plan for surgery. [00:18:00] Otherwise, as far as mutations are concerned, again, the only thing that we think about or one of the primary things that we think about with systemic therapy is that, again, as the body is exposed to those types of therapies over a period of time. What I tell patients is that those cancer cells start to get smart and they start to find ways to work around the mechanism of action for that drug. So, the thing we have to think about is resistance that can happen or build up over time. And so, that is a real concern that we have for GIST patients, not just those that are getting potentially surgery, but for any patient that might be on an oral therapy for some prolonged period of time, which is most of our patients in the GIST population.
Ginger Sawyer: Thank you for that. One – I think probably most of the people who are on the – On this webinar have experience therapy, one of the TKIs. And I know from my vantage point, I had a variety of initial early, early side effects. Everything from liver toxicity to continued anemia and rashes. I'm sure most of the people who are watching today would like to have some input from you on the best treatment for the various side effects. And so, if we could just go around the horn with each of you and give us your best take on how you manage side effects of the various TKIs. Melissa, would you start that?
Melissa Hohos, RN, BSN, OCN: Or Kathy, do you want to –
Ginger Sawyer: Or Kathy.
Melissa Hohos, RN, BSN, OCN: – take a stab at that first?
Kathy M. Polson, NP: Yeah, I can. I'm happy to start. So, traditionally many patients will start with imatinib which is a drug that we typically we'll start at the standard dosing. And we do a lot of education before patients start the medication about potential side effects. And then we plan for routine visits whether in person or virtually during COVID to check in and see how patients are doing. And we check lab values to make sure everything is OK with regards to the white blood cell count, the red blood cell count, the platelets, kidney function, liver function. And we, additionally, we'll make sure electrolytes are in check. And we routinely check in with patients and we provide them our contact information so if they have any adverse side effects. And I think by doing a lot of the education in the beginning, patients have some ideas of what to expect. And we talk about preventative measures with some of the treatments. It can be helpful, for example, to start by using – [00:21:00] good moisturizing creams on the hands and feet before they start the medication. And we talk about things to avoid. And we sometimes, for some of the second and third line treatments of intense regorafenib we will sometimes recommend starting at a lower dose initially and working the way up with the treatment making sure they tolerate it after a couple of days. And then we'll increase the dose level, make sure they tolerate a couple – For several days to a week. And then, with a goal of getting to the highest tolerated dose. In our personal experience here at Dana-Farber, we've had a lot of success being able to have patients start the treatment and manage the side effects with our help and guidance rather than having to hold the drug because of a severe toxicity and then start over. And we also work in a very multidisciplinary approach, as Ginger address and Melissa earlier had mentioned. I'm sorry, Molly and Melissa addresses earlier. We'll have patients see nutrition if they're struggling with diarrhea or constipation sometimes to talk about different foods that may impact and help the side effect. We'll have patients meet with GI if diarrhea, for example, becomes a significant problem. We sometimes involve cardiology for high blood pressure that's a challenge to manage. And we work with oral medicine for symptoms that might bother the mouth like mouth sores or sensitivity. Dermatology if rashes become a problem. A lot of the nurses and nurse practitioners and physicians in our practice are very comfortable managing the side effects initially for mild symptoms. And then we bring in our colleagues as needed when side effects become challenging. The goal is always to help the patient live a very good quality of life on the treatment. And we work with them to hopefully have no fear about the treatment and know that we can work together to get to a good tolerated dose.
Ginger Sawyer: Molly, from your experience with the side effects of the second generation, third generation of drugs, in some of the newer drugs, are you giving specific or a different type of protocol on management for those drugs than you do with the imatinib?
Molly Finger MSN, MPH, APRN, FNP-C: No, I think that Kathy hit on that point which is, I think we do our best to educate patients so they know what to expect because the scariest thing is having something happen and not being told ahead of time that that could be related to your drug. And so, if we [00:24:00] give the patients that information ahead of time and we talk through to them how would we manage it, then I think the patients feel more empowered and have a better sense of control over what's happening. Aside from that, the biggest thing that we always tell patients is to over communicate. So, if you're having a side effect or what you believe may be a side effect related to your treatment, don't sit at home and wonder about it or wait until your next scheduled follow up. Call the clinical team, send us a message through the patient portal and let's figure it out together because I don't want my patients to have that responsibility of figuring out is it or is it not related to the GIST? Is it or is it not related to treatment for their GIST? And so, I would say the only thing different about second, third and maybe fourth line therapies that we think about a little bit differently is that, certainly for me, toxicities for my patients tend to be a little bit more significant when they do happen. Tolerability is more of an issue so I do tend to monitor patients a little bit more closely initially, just to make sure, as Kathy had mentioned, that we're looking at lab values, that we're addressing any sort of symptoms early on so that, again, tolerability doesn't impact effectiveness because we have to deal with dosing reductions. So, that's really just the differences is just making sure we're being close – Or, closely monitoring and that, again, that we establish open lines of communication with our patients.
Melissa Hohos, RN, BSN, OCN: I totally agree Molly. I think that's so important to alert your team at the start of any side effect because the earlier that we treat the side effect, the long longevity you may have on the trial. Not in the trial, but per se, the treatment and it's easier to manage. When the side effects are severe it's a little bit harder to play catch up. So, it's much easier to treat the side effect at its earlier stage. And sometimes I know when patients are a little bit anxious to call. They don't want to call, they don't want to bother their care team. But that's what we're here for. We're here to help you get through your treatment. We have tools in our backpack. It's so easy for us to tell you how to do instead of you being at home worrying about how am I going to make it through the weekend? I have all these significant side effects. So, definitely call at the start of any side effects that's happening. And then also too, also the care team, and I'm sure you do this too Molly, we'll make some phone calls because we're like, maybe I should check up on this patient because she probably or he probably won't call and I just need to follow up to see if they're taking the doses correctly, if they have any questions on their treatment, so forth and so on.
Ginger Sawyer: I think what all of you have said is very important and I think it highlights the necessity for patients to be seen at a center of excellence. Because if you are treated by a GP or if you're treated by some local oncologist who had never seen a GIST, having a doctor that has seen a GIST [00:27:00] probably means that the nurses and nurse practitioners and the various people who are trying to help you get through the daily routine of dealing with these drugs, it's very important and, again, highlights the necessity for being at one of the centers of excellence. There are a lot of support groups, both in the United States as internationally that have been working with the patient community over the last 20 plus years. Do you have relationships with these support groups and do you have some recommendations of what the individuals who are new patients might learn from working with a support groups and other patients? Kathy, have you worked with any of the groups?
Kathy M. Polson, NP: Our institution has worked with a number of the groups, including GFI as well as the Life Raft Group. We've had a number of patients find tremendous supporting meeting other patients and needs advocacy group. They feel less isolated having a rare diagnosis and never meeting anyone who has a disease like themselves. And it helps them form bonds and relationships. We've had here in our institution, we've had some patients do some bonding through patient advocacy groups. And they did a rotating tea party. They went to different, before COVID, they went to different people's homes and they really learned a lot from each other. And they were able to sometimes talk about side effects, but also talk about living with cancer and the challenges and how to make connections maybe in their community and so forth.
Melissa Hohos, RN, BSN, OCN: I think a lot of the members who have had GIST for quite some time have such a wealth of knowledge to share with the newly diagnosed GIST patients. Being on the list and using the internet as a positive avenue to get information like Facebook groups. I've seen a lot of Facebook groups where people can connect and feed off each other in terms of just like, where would you go for care? What treatment are you on? What kind of side effects do you have? These patients who have had GIST for quite some time can be such a role model, mentor, teacher for the newly diagnosed patients so the newly diagnosed patients aren't reinventing the wheel. They're not starting from scratch because they have people to help them. And also too is, they can dispel the technical info in plain terms and help them through the process. I found that many of my [00:30:00] patients would meet up with patient at the Dana-Farb. They would coordinate their appointments together. Like Kathy said, they would have tea parties. And then also too, because of our patients coming from afar, they don't have family members that come with them often because, one, the expense and it's hard to get people to travel with them, the logistics of that. Then those patients, the other patients and their support groups would attend the patient appointments with them so they weren't alone during their appointment. So, they could help with transcribing, taking notes for them because their family members were not there. So, I think having a support group or being in a support group is just so helpful for patients with a rare disease.
Ginger Sawyer: Some of the feedback we got during the pandemic was that, particularly since many of you were seeing your patients with via telemedicine, we saw quite an increase in the activity among the support group in that it was just easy. It was easier than working up a teleconference appointment. And so, it was very interesting to see the feedback we were getting from the patient community during the last 18 months. You probably saw that too.
Melissa Hohos, RN, BSN, OCN: Yeah, we definitely did. And there's something to be said about patients going through the same thing that you're going through. Having – Going through the same emotions and physical symptoms. You can relate to those people much better that sometimes your caregivers or your doctors and nurses. Those people just really get what you're going through and it's such a good resource to have that support for you.
Ginger Sawyer: Do you have any suggestions on how a support group could provide additional information for, and not just information, but assistance for the patients? We've been getting quite a barrage of requests for financial support, drug – Assistance for drug payment, any kind of assistance we can give for financial. What do you normally tell your patients when you had those issues? Kathy, do you have experience in that?
Kathy M. Polson, NP: A number of these medications can be pretty expensive or have large copays. We're blessed here at our institution that we have an entire department and a person who's specific to us to help with copay assistance. Many of the drug companies have patient assistance programs where they [00:33:00] can help if people meet financial criteria, they can help provide the drugs to the patients. So, we rely very heavily on our financial support through the team here that basically kind of – We send a – We have a pharmacy group here that we send the prescription to. And then they tease out what pharmacy needs to fill the prescription. In some instances, mail order pharmacies are required. They get back to us with where the prescription needs to go and what the copay is. And then from there, we work with the patient through the financial office to figure out how we can help the patient afford the medication. And I believe our financial group will use copay assistance funds from different various groups. And then as far as – [CROSSTALK] Sorry. And just like our social workers and our resource specialists, they sometimes have means to help patients offset costs. Now, it may just be a gas card or a grocery card, those types of things, but we have internal ways to help support patients in various ways.
Melissa Hohos, RN, BSN, OCN: We have travel vouchers. We give travel vouchers sometimes and we can also supply housing, either in people's homes or hotels at a reduced cost to help minimize some of the cost that are associated with traveling. Our patient resources, we work very closely with them to help us with those types of needs. Also, I found that the GIST Cancer Research Fund, it has resources for coping. And you can find that right on the internet. They have advocacy pages that lay it all out, education support groups and also info on programs that help patients with travel assistance as well. So, I found that GIST Cancer Research Fund has really been helpful for my patients. How about you Molly?
Molly Finger MSN, MPH, APRN, FNP-C: I think that we follow a pretty similar process to what you guys do at Dana-Farber here at Moffitt. The process for our patients, in particular with regards to the questions about and the cost of drugs, which we do appreciate are significant for our patients, but we also are advocated for our patients and know that that's the right therapy so we do everything that we can. The initial approach is always to say, what is or is insurance willing to cover any portion of the drug? And in some cases they will, in other cases they won't. And that's, of course, the way that insurance works. But then we have the process set in place that we automatically, upon identifying the appropriate therapy, we'll have patients to fill out the patient assistance forms so while insurance is going through their piece and once we get a response back from them, then we go through the drug manufacturer, which [00:36:00] honestly are usually very generous in terms of being able to provide assistance, either by way of copays or, more often, by way of free or reduced price on drugs. And so, that has assisted a lot of our patients and removed the barrier of cost as far as dictating what treatment that we can get. But again to what Melissa and Kathy had both said, again, this is again, a multidisciplinary approach. So, we have our clinical pharmacists that are on board. We have social work that are saying, we have or are aware of funds that we can get this way. So, we often don't accept no for an answer and I think that comes from our nursing background, if I'm honest. But I think that that's one of the ways that we advocate very strongly for our patients. While I don't know anything about the cost of drugs, I never want that to be a barrier as far as my patients getting the best treatment option available.
Ginger Sawyer: And your patients certainly appreciate that. One of the things that GSI does also, we have a second opinion fund so some individuals who are diagnosed and are not quite certain what their treatment should be, we do give grants for travel and vouchered expenses for a trip to one of you facilities of excellence. So, we would hope that patients would take advantage of that particular offering that GSI makes. We're going to be moving very quickly to the Q&A section. Anything any of the three of you would like to say before we start with the questions? Melissa?
Melissa Hohos, RN, BSN, OCN: No, I don't have anything to add.
Ginger Sawyer: Nothing to add? Well, we're going to turn it back to Ryan then. Ryan, if you're ready for questions.
Molly Finger MSN, MPH, APRN, FNP-C: In the chat, I'm seeing that Ryan posted a question. He mentioned, I don't know if you can see that Ginger, there's a chat section where he listed the question. The first question says, how does the size of a tumor determine the diagnosis. So, I'll leave that for Melissa or Kathy to grab.
Kathy M. Polson, NP: Basically, when a patient presents, they take into account the size of the tumor as well as the location of the tumor, like where it started and then the mitotic rate from the biopsy. And they basically put patients in a risk stratification for the – Basically determining the approach to treatment. [00:39:00] And the multidisciplinary team will together make the decision based upon all of that information about whether they go straight to surgery and then think about treatment thereafter. If they do neoadjuvant treatment up front where they start on imatinib with the goal to shrink the tumor to make for an easier surgery. And they then have surgery and then go back on drugs, those types of things all come into the decision when you're look – The size of the tumor is important for the stratification, making sure that people are following the right treatment path.
Ginger Sawyer: Also, on GSI's website, we have the slide presentations from ten or 12 years of our summits. And there are PowerPoints that indicate the risk factors based on – The risk based on a variety of factors. Everything from size to mutation to location to possibility of a rupture. Various things would be of benefit. So, if a patient is curious about that, they could find that on one of the seminar webpages. If – There's a question from a patient asking if the patient has already received genetic testing should they consider getting another test? Are there any benefits for having more than one genetic test?
Molly Finger MSN, MPH, APRN, FNP-C: I think initially, the genetic test is going to tell you the mutation that's predominate in your GIST tumor. And so with that, again, we had mentioned earlier that that would then help to dictate treatment, timing of treatment, duration, et cetera. The time at which I would think that it would be appropriate to consider additional mutational testing would be if you've been on a therapy for some time and you develop resistance to that therapy, which means that the cancer is progressing, you have new sites of disease or you have enlargement of an existing tumor. At that point it's helpful to understand or can be because, again, if we understand that there are additional mutations that are now present in your GIST tumor or tumors, then that can direct additional therapies. So, that sometimes is beneficial, although again, because of the way that GIST is laid out and it's pretty straightforward in terms if we have first line, second line, third and fourth line therapies, oftentimes we wouldn't wait for mutational testing in order to proceed with a second, third or fourth line therapy. But again, does it give us some confirmation as far as, yes, this is the right direction or do we need to change course? That's the point at which we would use that, [00:42:00] so there is a timing for which that makes sense, but if you've initially got a diagnosis and are just getting started with treatment, oftentimes we wait until again we see some development of resistance or progression of disease before we consider additional testing.
Ginger Sawyer: Another question about the dosage of imatinib and the time – the length of time one should stay on imatinib, the question is how long should patients remain on it and if a lower dose is not working, what are the chances of a higher dose working? Molly, do you have any background on length of treatment?
Molly Finger, MSN, MPH, APRN, FNP-C: Again, this is really dependent upon the type of mutation that you have because that can dictate therapy, it can dictate dosing. But if I have a patient for which we have mutational testing that's confirmed that imatinib would be an appropriate drug, and then the question about if a lower dose is not working, what are the chances that a higher dose would work, that's dependent upon the person. These are the hard questions to answer because there are reasons why switching to a different therapy makes sense, and there are times when increasing the dose could make sense. The magic number about how long a patient should remain on imatinib, we kind of have this balance between, number one, how effective is the therapy, so are you continuing to get benefit, are you at least having stable scans that are showing that there's no progression of disease? That's usually a good sign to stay on the imatinib. And the other piece, the other consideration we always take is tolerability. If you can't tolerate the drug, then it doesn't matter if it's effective for you because your quality of life is going to be very poor, and so we have to kind of come up with a way to find a balance between the two. Again, the – it's a kind of a generic question, and so therefore my answer will be a little bit generic. But just know that yes, we often will stay on imatinib for as long as it is effective for patients because it is usually a pretty well tolerated drug. But just know that that period of time varies for every patient. We know about the average amount of time that imatinib will work for patients before we start seeing resistance to imatinib, but I have a patient that's been on it for about 15 years without progression, and which is remarkable, and I have other patients that will progress after six months of therapy. The real question is that this is an individual approach and your providers and your care team will work together to figure out when it's appropriate to consider either switching dosing or switching treatment therapies altogether.
Ginger Sawyer: I guess part of that depends on the risk factors too. Since I was high risk, I was put on it and it was anticipated I would be on it for a long time, and I have been almost 17 years now.
Molly Finger, MSN, MPH, APRN, FNP-C: Good for you.
Ginger Sawyer: So some of us have been very, [00:45:00] very positively impacted by all the research that went into getting imatinib to the market. There's a question about side effects. Referring to side effects, if a certain treatment is negatively affecting the kidneys, are there some other drugs, or what are other drugs out there that could help the patient tolerate the treatment in addition to whatever the TKI is? Melissa, do you have any idea on that?
Melissa Hohos, RN, BSN, OCN: Or Kathy, do you want to –
Ginger Sawyer: Or Kathy?
Kathy M. Polson, NP: Yes. There are – some patients have developed some kidney-related issues on some of the treatments, and in that circumstance, we've involved the kidney specialist or nephrologist to help get the numbers back into a good range by holding the drug and monitoring the patient closely, and then oftentimes switching to a different drug, often within the same category of drug. I've had patients very successfully tolerate the medication without the kidney issue happening. Just because it happens with one drug does not mean it will happen with every drug.
Ginger Sawyer: Another question, should post-op lesions be tested to confirm if the mutation is the same as the primary tumor? I think we somewhat discussed that, but Melissa or Kathy?
Melissa Hohos, RN, BSN, OCN: I think Molly discussed that, about the – we may do mutational testing to see if there's any secondary mutations in case the patient is not – is resistant to their current therapy. But like she said, we move on to the next treatment if that's the best option for the patient. Sometimes we won't wait for the mutational testing or we won't get it because we know that's the next step in treatment.
Ginger Sawyer: Do your institutions plan to continue doing telemedicine, not only for domestic patients, but also for international patients?
Melissa Hohos, RN, BSN, OCN: At Dana-Farber, we were doing telemedicine for all patients. Currently, the insurance has changed for out of state patients. We are no longer able to do telemedicine for out of state patients. We can still do telemedicine within our state. We do have an e-consult option, which is doctor to doctor at our site for international patients or patients who just want a second opinion. We do have that offering. [00:48:00] Also, on our patients, we have an international patient program that they can call and they will kind of navigate the system for international patients. But right now, the – with the current rules for insurance, we're not able to do telemedicine for out of state patients currently.
Ginger Sawyer: I see, that's at Dana-Farber. How at – how about at Moffitt, Molly?
Molly Finger, MSN, MPH, APRN, FNP-C: We are unfortunately held to the same standard as Dana-Farber in terms of recent regulatory changes that will restrict out of state telemedicine visits. I think for us, honestly, I – we – I think we can appreciate the convenience factor, but I will say as a clinician, I always feel a little bit more confident about any sort of treatment decisions that we make when I can see the person in the flesh. And so we'll always have room for telemedicine for visits where that's appropriate, but I think that as far as medicine is concerned for me and providing care to my patients, I do like to see them in person because I think that it gives us a better perspective about how they're really doing. But again, I can appreciate the convenience factor, and certainly in light of the COVID-19 situation that necessitated that, but we are under the same restrictions as Dana-Farber with regards to outpatient, out of state patients.
Ginger Sawyer: I think most patients would rather see you face to face anyway rather than telemedicine, unless it was a real financial hardship, and hopefully we can deal –
Molly Finger, MSN, MPH, APRN, FNP-C: Exactly.
Ginger Sawyer: With some of those issues too. I don't know if any of you have experience or any information on the horizon about new drugs, new – or any particular trials, or how an individual might be able to work and get information about a potential trial or one that's ongoing that they might be able to get enlisted in. Can any of you talk about that, about new drugs or trials?
Melissa Hohos, RN, BSN, OCN: I can start since I'm the research nurse here at Dana-Farber. We've been so lucky starting in the year 2000s and on to have these FDA approved drugs, and most recently approved in 2020 was the avapritinib [INAUDIBLE] 42B and Qinlock, which is approved for fourth line treatment. Right now, currently in clinical trials, we have a lot of SDH deficient type GIST trials, more than for patients who have mutations in KIT, so we have a rogaratinib trial, which is a type of TKI, and that's for SDH deficient GIST [00:51:00]. We have a monoclonal IV therapy from a pharmaceutical company called Daiichi Sanchepo, and just Sankyo, sorry, and it's DS6157A, and that's an IV treatment, and it's a phase one clinical trial. And we also have another phase one clinical trial with another monoclonal antibody and an oral therapy called palbociclib, and that's for SDH deficient GIST as well. We just had a trial close with Sutent versus Qinlock, so I'll be very anxious to hear about that second line head to head clinical trial, so they put Sutent against Qinlock and so it would be interesting to see what treatment is better at that point in time. I always tell my patients if they're interested in clinical trials and we don't have anything available to ask for that second opinion, to go to another sarcoma excellence site, to see what kind of clinical trials they have available. Sometimes the doctors will talk amongst the doctors to see what they also have available at other sites other than Dana-Farber, so that helps the patient not have to go and [INAUDIBLE] if we don't have any research trials available for them. And then also a treat resource is www. clinicaltrials.gov. It's a very easy tool to just put in the diagnosis and then all the trials that are open or accruing is right there for you. It shows you where the locations are, who to contact, what the specific requirements are for, and so I always tell our patients "Use that site if you wanted to find something out all over the United States," that kind of thing.
Ginger Sawyer: I would think also –
Melissa Hohos, RN, BSN, OCN: And you all –
Ginger Sawyer: Most of you would have –
Melissa Hohos, RN, BSN, OCN: Clinical trials are always ongoing. Some of them closed, some of them open. Those change all the time, and so we may not have a clinical trial now, but we may have one in a couple of months.
Ginger Sawyer: I would think too each of your sites would – your – on your websites, you probably would have your particular trials listed. Is that correct?
Melissa Hohos, RN, BSN, OCN: Correct.
Molly Finger, MSN, MPH, APRN, FNP-C: Yes.
Ginger Sawyer: How often should a patient – how often should patients be going for scans after treatment has ended, or is it more on a case by case basis? Kathy, do you have thoughts on that?
Kathy M. Polson, NP: I'd say usually after stopping a treatment. [00:54:00] It's definitely a case by case basis, but generally speaking, after completing a treatment or taking a break from a treatment, patients will get scans more frequently in the beginning, like every three months or so, in that ballpark, sometimes sooner, depending upon the reason for stopping the treatment and the patient's scenario, for example. But generally if someone has one tumor and it was – they had – it was resected and then they go on imatinib for a period of time, then you always are going to start scanning on a more frequent basis, like every three months or so for a period of time, and then from there it will spread out.
Ginger Sawyer: Give us a little bit of feedback on how your institutions deal with alternating CTs and MRIs in order to reduce the potential negatives from having so many CTs. What about Dana-Farber, what those – do you use only CTs or do you use CTs and MRIs?
Kathy M. Polson, NP: We tend to use CT scans, typically we do CT scans of the abdomen and pelvis, sometimes for various reasons, people need the test included. We do, on circumstances, though, add an MRI because there are circumstances where something's better visualized, for example, in the liver, where the CT will come in, it would be better visualized in the liver. There are circumstances because of contrast allergy where we'll do an MRI routinely. We sometimes will do MRIs in patients who are very young when they're diagnosed and have very many scans ahead of them. We some – we don't tend to alternate just because comparing CT and an MRI, it's not comparing apples to apples. We don't tend to alternate every other, we tend to do CT and then switch to MRI when indicated or for specific reasons.
Ginger Sawyer: And another question, how often can GIST recur and how should patients approach their care team to identify their risk? As we've talked about the risk factor, but I guess GIST could recur after you've had it resected, it's a potential for having it recur multiple times. Any thoughts on that?
Molly Finger, MSN, MPH, APRN, FNP-C: I think to what Kathy had just mentioned, which is we have a pretty set standard for timing for what we call surveillance or restaging, so if you're actively on treatment, we talk about restaging, and that's our way of understanding if the therapy that we've offered you is providing benefit, [00:57:00] if we're seeing either stability or a decrease in the disease burden that you have, so once we get through a treatment, so let's say we recommend a patient be on imatinib therapy for three years, they tolerate it great, we haven't seen any new signs of cancer, we move into a surveillance kind of a world, and that's where we're just actively checking to make sure that we don't see any signs of the GIST recurring. And so that is something that would be a pretty straightforward plan that you would have with your oncology team, and for us again, kind of very similar to what Kathy had mentioned, but initially, say year one, post treatment, we would be doing scans about every three months. Assuming that the scans were negative, patient's doing well, we kind of start spacing that out a little bit more, but there is kind of the routine timeframe for which we follow, and that's pretty standard for any patient with cancer regardless of diagnosis just included. There would be quite a bit of follow up for patients in that initial kind of five year post treatment time period, but what I always say to patients is if you're not feeling well, if something feels off, it doesn't matter what the timing that we have set for your scans or for your follow up, let us know, and again, like I said earlier, over-communicate. I don't want a patient having to guess, or I don't want them to have to say "If I'd only called and talked to Molly six months ago, I was due in a year, but I just waited another six months, if I had only done that sooner, would it have changed the outcome of my prognosis?" And I don't want patients to have to think about that, so again, if you have any doubts, any question, touch base with your care team. More often than not, we're going to be more than happy to bring you in and figure out if we need to push scans up, just so that we can relieve your anxiety about that issue.
Ginger Sawyer: Great answer, thank you very much. Unfortunately, we're out of time. If you'd like to watch this webinar again, it will be available on the Webinars-On-Demand page of – excuse me, Curetoday.com, C-U-R-E-T-O-D-A-Y.com, within the next coming days. I want to thank our panelists and the audience for attending and participating in today’s event. I'd also like to thank CURE and our partners Deciphera and GSI for making today’s educational webcast possible. And please don’t forget to check your email tomorrow for the survey and you will be, if you complete it and return it, you will be entered to win a gift card. Thanks to all for joining, and we’ll see you next time. [00:59:40]