New Recording 9

2:51:00 8 Ahotsak 73 Kapituluak 2889 segmentuak

Transkriptu osoa Bilatu dena

Ahotsak

Kapituluak

0:21

Kapitulua 1: Thank you. 45s · Speaker 1

Thank you. Oh, yeah.
1:29

Kapitulua 2: What's my tower? 235s · Speaker 2

What's my tower? Thank you very much. Anyway, we have a local reference to U.S.T.E.K.A.T. Thank you. Thank you. Thank you. That's why it doesn't... It doesn't... It doesn't matter. It doesn't matter. It doesn't matter. It doesn't matter. It…
10:01

Kapitulua 3: Exactly. · Speaker 1

Exactly.
20:02

Kapitulua 4: Around this, we can get a little bit, a little bit. 52s · Speaker 1

Around this, we can get a little bit, a little bit. But it's not surgery. Surgery is not here, it's just medical medicine. For example, surgery is not gradation therapy. It's not systemic therapy. Do you want to go to the board? Do you want…
25:09

Kapitulua 5: Thank you. 303s · Speaker 1

Thank you. How are you? How are you? How are you? Thank you. Thank you. Thank you. Keep it, keep it. Thank you. That's why The name I know Assalamu alaikum. Good afternoon. My name is Guthamma Amr. I am the general manager of Merck and Sala…
30:12

Kapitulua 6: patient population that may have been a bit overlooked with little, I would say, or like few therapeutic options. 143s · Speaker 1

patient population that may have been a bit overlooked with little, I would say, or like few therapeutic options. And that meant we are really proud, glad that soon we will bring, I would say, one of the therapeutic options for those patien…
32:36

Kapitulua 7: I'd like to thank Mark for giving me the opportunity to talk to distinguished experts in Sankoma. 300s · Speaker 2

I'd like to thank Mark for giving me the opportunity to talk to distinguished experts in Sankoma. So today's topic is going to be, or at least my talk is going to be, a brief overview on this one's tumors. I'll speak for about 15 minutes, t…
37:36

Kapitulua 8: basically, activation of this pathway. 301s · Speaker 1

basically, activation of this pathway. You get your beta -catenin, and it goes intranuclei, where you get proliferation and propagation of... types of tumors when you have an activating mutation in this gene. There is your NOTCH pathway whi…
42:38

Kapitulua 9: working for CT and MP1 mutations. 302s · Speaker 1

working for CT and MP1 mutations. These are highly sensitive for core biopsies, and these are diagnostics of these good tumors. What about FAPs? I'm not sure what my other colleagues are doing, but any patient who's young who comes to us wi…
47:40

Kapitulua 10: I think, sorry. 139s · Speaker 1

I think, sorry. They want to hear you. Yeah, they are reviewed by soft tissue and sarcoma. Everything, not only the complex cases, Dr. Ayesha. Yes, usually most of the dysmoid cases, we try as much as possible to present them in our sarcoma…
50:00

Kapitulua 11: Sometimes it's difficult to get enough tissue for the diagnosis. 63s · Speaker 6

Sometimes it's difficult to get enough tissue for the diagnosis. Sometimes you need to repeat the biopsia again to reach the final diagnosis. But overall, if there is enough tissue, the diagnosis by an expert pathologist is not difficult. Y…
51:03

Kapitulua 12: to be honest. 59s · Speaker 2

to be honest. It's happened to me one time. They sent me the report. It looks like clinically or radiologically like it is more than. They said it's metasol. but the one who I think read the report was not a sarcomathologist, and I asked hi…
52:04

Kapitulua 13: I think I also, I still have not had yet a positive, like a non -FAP patient, but I think when I'm taking the history of the patient, I have a patient that I'm suspecting for, and these patients are referred to the genetics. 89s · Speaker 5

I think I also, I still have not had yet a positive, like a non -FAP patient, but I think when I'm taking the history of the patient, I have a patient that I'm suspecting for, and these patients are referred to the genetics. But yeah, I don…
53:33

Kapitulua 14: Majority are in sporadic cases. 85s · Speaker 6

Majority are in sporadic cases. Approximately 10 % are found associated. We have the second question. Which patient should be considered for genetic testing, including CTN and P1 and ABC testing? So I think CTNB1 testing is done through NGS…
55:00

Kapitulua 15: Once cancer is associated with FAB, they are doing it automatically, but for this one, the pathologist will request, not us. 63s · Speaker 2

Once cancer is associated with FAB, they are doing it automatically, but for this one, the pathologist will request, not us. Actually, for us, we are not doing the genetic tests on routine -based. We are selective regarding what we are look…
56:03

Kapitulua 16: Yes, for the NGS, as my other colleagues said, so it's mainly by pathologists, especially for difficult cases. 60s · Speaker 5

Yes, for the NGS, as my other colleagues said, so it's mainly by pathologists, especially for difficult cases. If they have difficulty and really diagnose this more tumor by immunistic mystery, sometimes they request NGS for that. For the F…
57:04

Kapitulua 17: Unexplained mass growths, especially within the context of a suspicious course like pregnancy. 57s · Speaker 7

Unexplained mass growths, especially within the context of a suspicious course like pregnancy. If you have a lady with a neck mass that continues to grow during a pregnancy, biopsy revealed that dysmoid tumor. So I think a global mass would…
58:05

Kapitulua 18: Yes, so as my colleague said before, it's usually depending on the patient themselves. 62s · Speaker 6

Yes, so as my colleague said before, it's usually depending on the patient themselves. If we're talking about a pregnant lady that develops a progressive mass, if a patient that is known to have a very significant family history of colon ca…
59:08

Kapitulua 19: plus -minus pain, absence of metastasis, then low -grade sarcoma versus this disease. 71s · Speaker 2

plus -minus pain, absence of metastasis, then low -grade sarcoma versus this disease. You know, like anything else, any mass, we should know it is the final pathology for it. And usually starting most commonly, in the extremities, especiall…
1:00:24

Kapitulua 20: So, for the intra -abdominal, actually, it is mostly regarding non -specific symptoms because it's not diagnostic until the patient has scans or have compression symptoms. 63s · Speaker 4

So, for the intra -abdominal, actually, it is mostly regarding non -specific symptoms because it's not diagnostic until the patient has scans or have compression symptoms. This is why most of the intra -abdominal, you will see it's a bigger…
1:01:30

Kapitulua 21: Okay, so I think one of the challenges for this tumor is the spectrum of presentation. 91s · Speaker 5

Okay, so I think one of the challenges for this tumor is the spectrum of presentation. So some cases are actually remain stable for a long time without any changes. Some of them they have actually regression of the mass improvement of the s…
1:03:02

Kapitulua 22: So awareness among the medical community, surgeons, orthopedics, that this tumor should be discussed in a referral center, tertiary high volume center, because what we usually see is that the doctors outside of these centers are just jumping and doing surgery or whatever. 79s · Speaker 6

So awareness among the medical community, surgeons, orthopedics, that this tumor should be discussed in a referral center, tertiary high volume center, because what we usually see is that the doctors outside of these centers are just jumpin…
1:04:24

Kapitulua 23: Let me ask the expert here. 159s · Speaker 2

Let me ask the expert here. This is, I think, a bit difficult to make an analysis. Suppose you have a mask, you don't know what it is, is it lipoma or it will end by this way. Don't you think we'll say, okay, awareness for the, say, you sho…
1:07:02

Kapitulua 24: So I agree with our colleague. 60s · Speaker 4

So I agree with our colleague. The most important thing is awareness of the disease. This I think will be done through education, through also sometimes the presence of like support group or like small group. It's some work in other countri…
1:08:06

Kapitulua 25: I think it's well said from all the colleagues. 60s · Speaker 6

I think it's well said from all the colleagues. Regarding the first gate, regarding the family medicine or the surgeon as well, they have to know, like Dr. Karanwini presenting, that for most of the time you are doing core biopsia and then …
1:09:09

Kapitulua 26: Yes, so I agree with all the comments from the colleagues, increasing awareness among patients, population, in addition to also maybe some projects from the Minister of Health, including clinical pathway. 65s · Speaker 5

Yes, so I agree with all the comments from the colleagues, increasing awareness among patients, population, in addition to also maybe some projects from the Minister of Health, including clinical pathway. So, early access for the physician …
1:10:15

Kapitulua 27: ultrasound, CT, and MRI. 69s · Speaker 3

ultrasound, CT, and MRI. You should do at least two modalities of radiology to have accurate diagnosis. Based on your experience, what proportion of dysmoid following a clinical course? Stable, resolve spontaneously, have cycle of progressi…
1:11:28

Kapitulua 28: So remain stable after diagnosis, I will go as well 40%, I resolve spontaneously 0%, have cycles of progression and resolution about 20 % and progress rapidly it will be the rest. 68s · Speaker 8

So remain stable after diagnosis, I will go as well 40%, I resolve spontaneously 0%, have cycles of progression and resolution about 20 % and progress rapidly it will be the rest. For progressive rapidly, maybe 60%. And for the patient who …
1:12:37

Kapitulua 29: progression is the most encountered, so it's like 40 % or 40%. 65s · Speaker 7

progression is the most encountered, so it's like 40 % or 40%. Then followed by stable. Then some increase or decrease comes. Spontaneous resolution is the least. Maybe the symptoms will go away, but that human itself to go, I think this is…
1:13:42

Kapitulua 30: same as everyone. 75s · Speaker 3

same as everyone. Very few progress rapidly. I haven't seen results spontaneously. The majority are stable, and a big chunk progress and decreases. What stage patients usually refer to you? When newly diagnosed, if you find newly diagnosed,…
1:15:09

Kapitulua 31: I think with the FDA approval of the Muse drug three years ago, this disease started to become more of a medical therapy. 62s · Speaker 4

I think with the FDA approval of the Muse drug three years ago, this disease started to become more of a medical therapy. So since that, I can see, because I've been practicing nine years, for the past three years only, I've seen the referr…
1:16:13

Kapitulua 32: I think nowadays, previously, for outside, most of the chem, referred after a reception, usually. 69s · Speaker 2

I think nowadays, previously, for outside, most of the chem, referred after a reception, usually. For in -house, now, as lucky, most of our surgeon, they are aware. And actually for us, intra -abdominal, of course, for the general oncocereg…
1:17:24

Kapitulua 33: So, based on this, that when we are seeing it, why we have most of the patients they are presenting to us on progression or local recurrence, we have to admit that most of the surgeons look at the small tumor as a benign lesion and it's easy to be resected. 67s · Speaker 6

So, based on this, that when we are seeing it, why we have most of the patients they are presenting to us on progression or local recurrence, we have to admit that most of the surgeons look at the small tumor as a benign lesion and it's eas…
1:18:32

Kapitulua 34: it's invisible. 241s · Speaker 7

it's invisible. This is why most of the patient presented to us because mainly of the disease behavior and also the surgeon's belief. This is why they are sending the patient on this on later stages. Yes, so I agree with our colleagues. So …
1:22:33

Kapitulua 35: The second part is going to be on the treatment landscape so let's talk about the overview and the treatment principles. 140s · Speaker 2

The second part is going to be on the treatment landscape so let's talk about the overview and the treatment principles. So there are certain treatment principles that we'll discuss here. I think probably the most important one would be act…
1:24:54

Kapitulua 36: There are, of course, exceptions for active surveillance. 298s · Speaker 3

There are, of course, exceptions for active surveillance. would be patients who are symptomatic or whose pain or symptoms are not controlled with simple analgesia such as acetaminphal or patients whose tumor location progression or potentia…
1:29:55

Kapitulua 37: stratifying the patient to morbid and not to morbid, but in between. 90s · Speaker 2

stratifying the patient to morbid and not to morbid, but in between. We are lacking to recognize who is an aggressive one. And the aggressiveness, it will be by progression or compression. But before knowing this, we still, I think it's lac…
1:31:25

Kapitulua 38: get. Now I would recommend surgery. 139s · Speaker 1

get. Now I would recommend surgery. I would actually recommend for some of the recommend systematic therapy. And the other question. How we can identify or we can make a definition about the close observation seeing patient monthly every th…
1:33:44

Kapitulua 39: It is quite challenging to convince those who are believe against a blind tumor, to convince them to get chemotherapy. 240s · Speaker 5

It is quite challenging to convince those who are believe against a blind tumor, to convince them to get chemotherapy. So we have imatinib, liposomal doxorobacin, the carbazinib doxorobacin, and this is too toxic, and besombrin, and useful …
1:37:44

Kapitulua 40: So this means first line, second line, third line? 142s · Speaker 2

So this means first line, second line, third line? If we look at the median age here relatively young, so probably some of these patients are FAP patients at 33 and 34 years of age, there is a slightly female higher predominance and FAP are…
1:40:07

Kapitulua 41: In placebo, 8 % actually regressed by a racist without any intervention. 141s · Speaker 5

In placebo, 8 % actually regressed by a racist without any intervention. Time to response is 5 .6 months in the narrow guesses at all and 7 % have had a complete response, 34 % have had a partial response, 50 % have had stability of disease…
1:42:35

Kapitulua 42: There is any specified cause regarding the ovarian? 88s · Speaker 3

There is any specified cause regarding the ovarian? I'm not sure about the law, but it is reversible. That's the most important thing. And also the important thing is that the majority of cases actually don't get it. So 75 % of patients wou…
1:44:04

Kapitulua 43: To remember, in the discussion section, they mentioned the notch pathway. 93s · Speaker 4

To remember, in the discussion section, they mentioned the notch pathway. They say the notch pathway is involved in follicle maturation. and the drug being acting on the notched pathway and the gamma securitase, they say it interferes with …
1:45:37

Kapitulua 44: We are absolutely right. 45s · Speaker 2

We are absolutely right. For any type of medications you are using, we are concerned the patient for this. But if it is labeled on any of the medication, they have a direct effect. we have to be highlighted and in the meantime we should hav…
1:46:44

Kapitulua 45: I think it will be one of the major challenges in using the drug because the appreciation that this is a denying tumor and we are going to give the medication. 301s · Speaker 3

I think it will be one of the major challenges in using the drug because the appreciation that this is a denying tumor and we are going to give the medication. or this is considered always for a problem regarding especially for sarcoma pati…
1:51:46

Kapitulua 46: You also have your fat associated, which I think I mentioned clearly. 193s · Speaker 2

You also have your fat associated, which I think I mentioned clearly. They get more intra -abdominal or intra -abdominal desmoids. Connectomy is recommended in such patients. Systemic therapy is preferred compared with surgery, and Neurogas…
1:55:00

Kapitulua 47: or typical anti-angiogenesis? 69s · Speaker 5

or typical anti-angiogenesis? This means that I will use the medication as an upfront. As long as there is no difference, I will use it subsequently. It is FDA -approved as first -line therapy than FDA approval. It is the only FDA -approved…
1:56:09

Kapitulua 48: So I agree with Dr. 65s · Speaker 4

So I agree with Dr. Kanan. The abdominal wall, if they are not very advanced, they might undergo surgery. All the rest, even the extremities, you are shying away from any surgery because of the high recurrence rate. Even in the extremity, i…
1:57:17

Kapitulua 49: Yes, I agree with Dr. 81s · Speaker 2

Yes, I agree with Dr. Atallah. I think an easy way to look at it is depending on the patient themselves. If they're symptomatic or asymptomatic. If a patient is symptomatic, then an intervention needs to be done. I wouldn't really go for wa…
1:58:39

Kapitulua 50: Excuse me for comment before I'll give my opinion. 80s · Speaker 3

Excuse me for comment before I'll give my opinion. First of all, thank you very much. Well done. And you make it very clear. It is a debatable, you know, as usual in such rare tumors. I remember eight years back, I was asked to have present…
2:00:00

Kapitulua 51: as a ferrous line. 89s · Speaker 5

as a ferrous line. And then individualize what we are currently doing is the TKI as a ferrous line. Probably now we should make frame shift to New York so the medical will be happy. The unavailability of the drug will start TKI, then reorde…
2:01:38

Kapitulua 52: I agree with our colleague. 63s · Speaker 7

I agree with our colleague. The first thing patient needs to be evaluated regarding symptom. If it's like progressive symptom and also for female patient to see the fertility issues and monopausal status may have impact on treatment. After …
2:02:45

Kapitulua 53: Thank you, Dr. 77s · Speaker 2

Thank you, Dr. Ashwaka. I think it will be the same, but I usually stratify the patient to intra -abdominal or extra -abdominal. For intra -abdominal, a small legion, and we should be followed, and even a stable one, with no invasion vascul…
2:04:02

Kapitulua 54: it should be national, right? 79s · Speaker 4

it should be national, right? National it will be more beneficial for all patients. It will require a lot of work, but I think it's doable. I have a small comment about institutional experience. I have to mention, in National Guard, we have…
2:05:26

Kapitulua 55: I want to just ask what agent you inject for the key mobilization? 230s · Speaker 2

I want to just ask what agent you inject for the key mobilization? Because of the sake of the time, I need a few of you who are volunteers to answer this. What's the most important treatment goal? Is it symptom control, stabilization, funct…
2:09:17

Kapitulua 56: mainly it's difficult to convince the patient that you have this active auto called B9 tumor and you're not going to do anything for it. 86s · Speaker 3

mainly it's difficult to convince the patient that you have this active auto called B9 tumor and you're not going to do anything for it. It's very difficult for the patient to understand and this is what I try to tell them is we'll do the f…
2:10:52

Kapitulua 57: I'll just comment on Dr. 107s · Speaker 5

I'll just comment on Dr. Isha because I do have one patient as well. He was having lesion intra -abdominal and was stable. And every time he's coming for his visit, he was, I should go for any type of treatment. So the point is that he is e…
2:12:46

Kapitulua 58: Any reported case transforming to malignant sarcoma? 175s · Speaker 4

Any reported case transforming to malignant sarcoma? It's a benign tumor. It should not metastasize it unless there's a mistake. Unless the pathology was not true as this one, it should not metastasize nor it should not transform. It's not …
2:15:48

Kapitulua 59: The easiest way is to say all of Tawbah. 150s · Speaker 5

The easiest way is to say all of Tawbah. Yeah, all are important. No, you see, complete resection, if they can do it, this is by default, I mean, the single most. But in many cases, they cannot do it with safety markets. And I think all is …
2:18:23

Kapitulua 60: Radiation is an alternative to surgery if surgery is contraindicated for some patients where the tumor is staying small. 84s · Speaker 2

Radiation is an alternative to surgery if surgery is contraindicated for some patients where the tumor is staying small. If those qualify for observation, but I mean it's a local treatment. If they are indicated for surgery and surgery cann…
2:19:50

Kapitulua 61: I think it depends on location, symptoms, if there is a vital organ that is close to a vital organ. 88s · Speaker 6

I think it depends on location, symptoms, if there is a vital organ that is close to a vital organ. close to a blood vessel, with active surveillance that are signs of early progression, I would initiate a nyelogazistat earlier. If you want…
2:21:32

Kapitulua 62: The chemotherapy is difficult to convince the patient, to tell this is non -marginant and you give chemo. 104s · Speaker 4

The chemotherapy is difficult to convince the patient, to tell this is non -marginant and you give chemo. It does not make sense for them. So just make it as a last chance for me. Especially if this virus is targeted, then you have TKIs als…
2:23:19

Kapitulua 63: Yes, based on the location and based on the threatening of the critical area, I agree with that. 62s · Speaker 5

Yes, based on the location and based on the threatening of the critical area, I agree with that. Okay, what systemic therapy are currently used frequently? Is neurogestate or TKI? Traditional chemotherapy, hormonal, and syndrome. Hormonal t…
2:24:21

Kapitulua 64: I think because of the unavailability of Nyarocastastat, we've started to order conformality, we've had a few patients. 300s · Speaker 6

I think because of the unavailability of Nyarocastastat, we've started to order conformality, we've had a few patients. on it now, some of the best ones, Alhamdulillah, but the commonest is actually Surafalib, Surafalib. Yeah, take your eye…
2:29:22

Kapitulua 65: safety local original uh local original treatment experience which question Okay, what question remains for you when translate the DeFi trial result into a routine practice, clinical practice? 112s · Speaker 1

safety local original uh local original treatment experience which question Okay, what question remains for you when translate the DeFi trial result into a routine practice, clinical practice? Which question? We'll wait for it. Anything els…
2:31:15

Kapitulua 66: And thank you, everyone, and especially Merck for. 301s · Speaker 2

And thank you, everyone, and especially Merck for... giving us this opportunity to get together into this benign tumor actually I'm very happy that it's benign and you are not having a lot of death or issues and with this focus on rare canc…
2:36:17

Kapitulua 67: is the pain, the nerve -related pain and the pain. 270s · Speaker 1

is the pain, the nerve -related pain and the pain. So with the chemo, he, like with some doctor, he said he tolerated well. In terms of symptoms, his symptoms were controlled. However, he started having cumulative fatigue and sometimes tach…
2:40:47

Kapitulua 68: Of course, as a conclusion, that if we have the drug, I think we should be prescribing it first -line, rather than using all the other options, in terms of efficacy, as we demonstrated with Dr. 68s · Speaker 5

Of course, as a conclusion, that if we have the drug, I think we should be prescribing it first -line, rather than using all the other options, in terms of efficacy, as we demonstrated with Dr. Danhan and Dr. Schwab, and also in terms of to…
2:41:56

Kapitulua 69: you it's not like talking about clinical trial like a real patient story and your successful story and he's inshallah successful okay so discussion will be short I promise you from the last session after sharing a local life experience with Negru state Negru state how does the data influence your confidence in using for this modern routine practice honestly I think we should get it in the formality and our center should be more than 10 patient and active drug so we can request it. 70s · Speaker 2

you it's not like talking about clinical trial like a real patient story and your successful story and he's inshallah successful okay so discussion will be short I promise you from the last session after sharing a local life experience with…
2:43:28

Kapitulua 70: Yeah, I still haven't started it on any of my patients. 91s · Speaker 3

Yeah, I still haven't started it on any of my patients. I ordered it for a few patients and it's approved, but we're still waiting. But yeah, definitely, hopefully, Janice will have the option to start. Yes, I think the real world and the d…
2:45:00

Kapitulua 71: It's like a simple medication. 106s · Speaker 1

It's like a simple medication. I think the more we use, the more we gain an experience. I think safety is we can do it. And the fertility issue. And the fertility issue. And the fertility, yes. And I think this is one of the issues that we …
2:46:46

Kapitulua 72: Ashwag, for you, for me, so the better pronunciation, when his name is Neeru, Jack came to us and got the suffix of sister. 102s · Speaker 2

Ashwag, for you, for me, so the better pronunciation, when his name is Neeru, Jack came to us and got the suffix of sister. I don't think this is something will make us not using the network. And the duration, this is very important. I thin…
2:48:29

Kapitulua 73: Thank you so much. 148s · Speaker 4

Thank you so much. It was great discussion and we made it actually on time even ahead of time. So thank you so much. We learned a lot and we are always happy when we bring something that really works and basically helps patients. Thanks aga…