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10656 5-31 1am NORDIC

FLINCE_MD1_TGCT GL Campaign Development Research Interview 2019 5-31 1am NORDIC
May 31, 2019

Interviewer: [Pause] Alright, now please don’t tell me anything about the city where you
practice or anything about the institution but please tell me a little bit about your
practice in terms of you’re a medical oncologist so are you in a hospital practice, in
a tertiary care center or in a private practice? What is the setting of your practice,
please?

Respondent: I’m an oncologist in Sweden. It’s a combination of a radio therapy oncologist and
medical oncologist so it’s one specialty, okay?

Interviewer: Yes.

Respondent: I’m working in a university hospital.

Interviewer: Okay, are you involved in sarcoma tumor board of any kind?

Respondent: I am involved in a tumor board with these doctors and decide for different patients
but I’m not involved in tumor board that they give the rules on how to treat the
patients.

Interviewer: No, that’s not what I want.

Respondent: I’m regularly having a tumor board besides the treatment.

Interviewer: Perfect, what do you know about tenosynovial giant cell tumor so a rare tumor –

Respondent: Very rare.

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Interviewer: Yes, TDMS tenosynovial giant cell, how many patients might you have seen with
this in five years?

Respondent: Maybe four or five patients.

Interviewer: Tell me how do you receive your patients? Who has referred them to you and why
are you seeing those patients? What are they coming to you for?

Respondent: They are coming to me through the orthopedic conference. There is a soft tissue
sarcoma conference where orthopedists are present as oncologists, as pathologists
and radiologists and through that conference, most of our sarcoma patients come
to us.

Interviewer: Are they coming to you for systemic therapy and, if they are, what do you tell
them and what do you offer them?

Respondent: If they are coming to us for –

Interviewer: Systemic drug therapy, they come from the orthopedic so they already had surgery,
yes?

Respondent: Yes, they already had surgery and they come for discussion of how to continue the
therapy and so on and, actually, it’s decided on the conference how to continue
and then, they see an oncologist to try to implement it.

Interviewer: What kind of therapy would you give to a tenosynovial giant cell tumor patient?
What could you offer them?

Respondent: Well, we don’t have so many alternatives and we could offer them some chemo
mostly.

Interviewer: What kind of chemo could you offer them?

Respondent: We would probably offer them some form of anthracycline but I would say like this.
We don’t have any good chemo to offer them.

Interviewer: Yes.

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Respondent: I would say like this. We don’t have any good chemo to offer them and we will try
something but, generally, the results are very, very poor.

Interviewer: Mostly in the United States, some doctors have told me that they try imatinib or
another TKI, imatinib or Gleevec.

Respondent: Gleevec, exactly. We also do that but maybe this is now our standard therapy for it
but the results are not good unfortunately.

Interviewer: How do you tell that to a patient? What will you say to a patient?

Respondent: I will speak to the patient. I will explain the difficulty and then, the truth that we
don’t have a good therapy for them but we will try to do our best with what we
have. I don’t want them to lose hope, understand?

Interviewer: Okay.

Respondent: I don’t want them to lose hope but I will try to explain the severity of the
situation.

Interviewer: Okay.

Respondent: Yes?

Interviewer: Alright, the patients who come from the orthopedic, do they typically come
because they had too many surgeries and high morbidity or isn’t that they had been
ineligible for surgery potentially because of co-morbidities or is it typically that
they’ve had surgery and they’re recurring and this is damage that the orthopedic
doesn’t want to do surgery anymore? What is the reason for the referral?

Respondent: The reason is that it could be either they had surgery and now the orthopedic say
we cannot do anything more for these patients and no more surgery, understand?

Interviewer: Yes.

Respondent: We cannot operate anymore. We should take care of the patient and see what can
you do so that is one reason. The other reason is that they say we cannot do any

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 surgery at all and then, they want us to take care of it because all the patients
with this diagnosis are referred to this conference, understand?

Interviewer: Right.

Respondent: Then, on the conferences, we decide what to do. If you can do any surgery and if
it’s a fit surgical patient and they can do anything meaningful for the patient, then
they can care of the patient at that moment. When they are ready, we
[Unintelligible] back to the conference and we take care.

Interviewer: Right, because it’s a surgery first condition, you do surgery first as a test.

Respondent: Yes, [Crosstalk] the objective. There might be situations after taking the diagnosis
that you want to give, for instance, pre-operative surgery to diminish the tumor
first.

Interviewer: Neoadjuvant.

Respondent: Neoadjuvant, as you were saying.

Interviewer: Yes, again, would you be using Gleevec, imatinib then or what would be
neoadjuvant, the [Crosstalk]?

Respondent: Mostly, we try to reduce it chemo but Gleevec could be most usable for the
patient.

Interviewer: That’s right. As you said, [Unintelligible] or something or, as you said, whatever is
most appropriate for the patient.

Respondent: Yes.

Interviewer: Okay, let’s move on. Thank you for that. We’re going to talk about the material. I
have some material I want you to look at. It’s about a systemic drug therapy for
the treatment of these patients so we’re going to go through these material page
by page and review the information. We don’t have time to read every single and
talk about everything so mostly, what I want you to do is look at each page and tell
me if it’s clear and credible and then, I may have some specific questions for you

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 but, mostly, we’re not going to take apart every page. We just simply don’t have
time, okay?

Respondent: Okay, you decide and you tell me.

Interviewer: [Laughter] Okay, please take a look –

Respondent: You’re the leader.

Interviewer: I am the leader.

Respondent: Yes.

Interviewer: I am not usually the leader but today I am. We’re going to start on this page. This
is the second page and I’d like you to read through this page and when you’re
done, I’d like you to tell me if it’s clear and if it’s credible to you so please read
through the page.

Respondent: Okay. [Pause] Now, I read it, okay?

Interviewer: Yes, you go ahead and read it and just tell me when you’re done.

Respondent: The page where I read “TGCT or potentially debilitating condition,” is that correct?

Interviewer: Yes, that is the correct page.

Respondent: [Activity] Yes, this is very clear.

Interviewer: Okay, let me ask you something about the headline here. The headline talks about
it being debilitating. Would you characterize these tumors as potentially
debilitating or frequently debilitating?

Respondent: Potentially.

Interviewer: Potentially because?

Respondent: You never know.

Interviewer: It could be or not, okay.

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Respondent: It could be or not but I think that what’s important is to emphasize the possibility.

Interviewer: That there may be?

Respondent: Yes, that it maybe.

Interviewer: Okay, thank you.

Respondent: Because it can be that it’s not a problem at all but it can be that it’s a severe
disease.

Interviewer: Yes, so the idea of potentially is the important, not this.

Respondent: I think so. [Crosstalk] that it should be serious about this. They have to take it
seriously.

Interviewer: Here is an alternative to the idea of potentially debilitating but they’ve added a
little bit more to the headline here and my question for you is which of the two
headlines do you prefer for that page? The top one, which is currently the headline
or the bottom one and why?

Respondent: I would prefer the first one.

Interviewer: Because?

Respondent: Because it’s more direct.

Interviewer: Thank you.

Respondent: It’s more direct. It tells you in fewer words the same thing and if you have it as the
title, then I think this is better.

Interviewer: It should be straightforward and direct.

Respondent: Straightforward, exactly, and the problem is that mostly those messages are read
very quickly by the one who is reading it and here it is immediately for the first
one.

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Interviewer: Thank you. Second page, please read through the page and then, I have a couple of
questions for you.

Respondent: Okay. [Activity] Yes, I think it helps.

Interviewer: Is any of this new? Is any of this information new for you?

Respondent: No, the exact numbers, you know it’s a very rare disease but here also you have a
very nice presentation of the numbers, you understand? That’s one of presentations
that recur in [Unintelligible], one of the patient would be TGCT [Unintelligible] and
if you have monopolized or diffused the difference in the percentage of successful
operations and so on but here you have a very clear picture of the numbers.

Interviewer: Let me ask you one thing about those numbers. There are two ways to present
those numbers. They could be presented as the one of two or one of seven or they
could also be presented as just percentages. Which way do you prefer and why?

Respondent: Here it doesn’t say anything of the total number. It gives you relative information.

Interviewer: No, it would be the text on the same page so it would be on the page here. You
would keep the whole page but the bottom would change to either the same
percentage at the bottom. All the other information would be there. Would you
prefer the whole percent involved?

Respondent: Yes, my thing is like this. Is this going to be presented to doctors or to patients?

Interviewer: No, doctors only.

Respondent: Then, I think you can present it with the percentages.

Interviewer: Okay.

Respondent: Then, I think you can do that for doctors. Otherwise, if you would not present it for
patients, I would prefer the first one.

Interviewer: You know some doctors like the first one for the same reason which is it makes
them think about these as real patients so some doctors have said to me if you talk
about one of two patients, that means more to me than just the 5%.

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Respondent: That’s right and maybe, that’s a very good reason why I get percentages is
because, as doctors, when we talk about results or when we read papers and so on,
you always present it. The most common form is with percentages but it’s right
that you think more of patients here because, otherwise, it can be anything with
percentages. It can be poise. It can be goodness. It can be whatever you talk about
percentages but I think that was a good idea.

Interviewer: It wasn’t mine but it was good. In the middle of this page, there’s a statement here
about complete resection and beneath it, there are two bullets. Here is the
alternative. At the top here is the statement about complete resection with the
two bullets. On the bottom, the only difference is that the statement is short so my
question for you is between the two statements about complete resection, which
of the two statements do you prefer and why?

Respondent: Now, the page here, completely turn the effect, that may not be the answer
[forever].

Interviewer: The bullet said the same in the top one and the bottom one except the headline is
different.

Respondent: I would prefer the top line.

Interviewer: Because?

Respondent: This is the top part. I think it’s like is the glass half full or half empty? You
understand? The top one tells you it can be effective but [Unintelligible]. The
bottom line tells you from the beginning, complete resection is not always a
possibility and my approach to the patients is more like I would tell the patient the
first page. You understand?

Interviewer: Absolutely.

Respondent: That varies between doctors, how you approach the problem.

Interviewer: Understood, it makes sense. Okay, next page then. We’re looking at mechanism of
action so I’d like for you to read through this and then, I have a couple of questions
for you.

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Respondent: Yes. [Activity] I’m ready.

Interviewer: Okay, I have a question. [Crosstalk] What do you think of the picture here? What do
you think of this graphic? Is it clear?

Respondent: I think it is clear. By looking at it, I think what’s written in the text, you can view it
on the picture.

Interviewer: Perfect, next question, they refer to the TGCT cell and the cancer cell and a lot of
doctors have a little bit of a problem with that. The alternative suggestion would
be neo-plastic TGCT cell or just TGCT cell so would it be better to call it just the
TGCT cell or a neo-plastic TGCT cell instead of cancer?

Respondent: If you call it neo-plastic, you get an impression potentially of a cell with a
malignant potential, understand?

Interviewer: Yes.

Respondent: If you call it TGCT, this is [body fuse]. It’s an abbreviation and you just call it the
TGCT cell. You have information by using the word “neo-plastic.” You add
information so therefore, I tend to look at this as the most favorable description.

Interviewer: Thank you for that. The next question I have has to do with the bullets that are
right above the graphic and the word “disrupt” is used in the first bullet. The
question is instead of “disrupt,” they could use “inactivated” the stimulation so
they could either use “disrupt” or “inactivated.” Do you know which one will stick
better there in terms of terminology?

Respondent: I would prefer “inactivated.”

Interviewer: Because?

Respondent: For me, “disrupt” is the word that is very often used these days but I wouldn’t say I
didn’t understand the word before but it wasn’t used in all the situations that you
use it. Everything is disrupted today. You have the new inventions that disrupt the
old ones. Everything is disrupted and, for me, [Unintelligible]. It has become so
common but I remember, in the beginning, I had to think what do they mean by

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 “disrupted?” I didn’t use that word before. Today, it’s very, very common and
therefore, “activated” or “inactivated” is very different.

Interviewer: Perfect, thank you for that.

Respondent: This is more of a language question.

Interviewer: Yes, it is.

Respondent: I would prefer “active” because “activation” and “active” have always been used
in the medical literature. “Disruptive” is a more modern word in this situation
which we didn’t use before as far as I know.

Interviewer: It’s a very good point. Let me move on and above the graphic, there are two
bullets. I think it’s a description of the technique.

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