The Susan Beris, MD, Brain Tumor CME Seminar

May 05, 2021

Information

May 4, 2021

Jennifer Moliterno, MD, FAANS and Christopher Cusano, Executive Director, CT Brain Tumor Alliance with presentations by Nicholas Blondin, MD, Bruce McGibbon, MD, and Brian Jin, LCSW

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To CiteDCA Citation Guide

00:00I think we can get started.
00:03It is 602. So hello and welcome to
00:05the first annual Susan Barris MD CME
00:09events for Brain Tumor Symposium.
00:11It's really an exciting way to kick off the
00:15brain Tumor Awareness Month of May. And,
00:18of course, we could not have done tonight.
00:21I might as well just start by thanking Renee,
00:25got it for her unbelievable organization
00:28of the evening, so thank you.
00:30Immediately to her to my panelists
00:33who are here, of course,
00:35who will introduce as they start
00:37their talks and to Chris Cassano,
00:39who is the President of Connecticut
00:41Brain Tumor Alliance,
00:43who has been a huge supporter of
00:45brain tumor patients throughout
00:47the state of Connecticut of our
00:49work here at yelling at Smilow.
00:51And it's really great to partner
00:53in this event tonight, so Chris,
00:56if you want to say a few words,
00:59sure, thank you. Doctor Moliterno and.
01:01Other panelists and when they bring
01:03us together and at first doctors
01:05to see parents for the first
01:07annual Susie Breast Symposium,
01:08I'm looking forward to being
01:10part of this night and, you know,
01:12sharing are more about our organization with
01:14all the branches are pasted family stuff,
01:17but again, we're we're excited.
01:18We're happy we want to be a part
01:21of your journey with you and
01:23just know that we're here.
01:24We're all patients and survivors,
01:26caregivers, we've been in your shoes.
01:28We understand it,
01:29and that we're a phone call or email away so.
01:33We're just really excited to be
01:35partnering with GAIL on this presentation,
01:37and you know, you're in your head,
01:39so thank you very much looking forward to it.
01:43Terrific, thank you again for being here.
01:46Alright so we will start the evening.
01:49I'm going to start off by sharing my screen.
02:04Can you see my screen? Yeah, OK. Alright.
02:16One second hold on.
02:19Started at the wrong part of the talk.
02:22OK. So again, thank you for being here.
02:26I want to tell you a little bit
02:29about the person who this is
02:32named after Doctor Susan Baras.
02:34She is a patient of mine,
02:37a patient of Nicks and Justin incredible
02:39person and survivor. I met her.
02:42It'll be 3 1/2 years ago soon knock Wood,
02:45which Susie makes me do an an.
02:48I do anyway but she had had
02:51a seizure as a pediatrician.
02:53She was in her office an.
02:56She began talking gibberish to her nurse
02:59and then generalized and had a seizure,
03:01and this was in the late summer of 2018.
03:04She unfortunately found that she
03:07had a glioblastoma and it was in
03:10the motor area and as you can see
03:12here on the picture on the right,
03:15Susie is an avid fitness fanatic and
03:17so she is maintaining her strength.
03:20Of course to anyone is so important,
03:22but particularly to her she was
03:25seen at an outside hospital an
03:27offered a brain biopsy.
03:29And she knew being a physician herself,
03:32that there could be more aggressive
03:34ways to treat glioblastoma even
03:36if it involved the motor strip.
03:39So thankfully she was referred to me.
03:42We performed an awake craniotomy.
03:44She did beautifully an achieved.
03:46A gross total resection and she
03:48went home two days after surgery.
03:50This picture taken at the path
03:52of hope of the Connecticut,
03:54Connecticut Brain Tumor Alliance a few
03:56weeks later as Susie after she ran,
03:59not the 5K that it was supposed to be,
04:02but the 5K twice so she ran the 10K just
04:05a couple of weeks after her awake craniotomy.
04:09So she's an incredible person.
04:10They featured her recently on
04:12the cover of medicine at Yale.
04:15As she she says herself,
04:16she was never very philanthropic person.
04:19But having a brain tumor really made
04:21her become one an she recognized the
04:23excellence in care that she received at
04:26Yale and that she continues to receive it.
04:29Yale,
04:29she wanted to to make sure that other
04:32people could have the same type of
04:34care that she did and so we formed
04:37this Susan Baras MD fund for the
04:40male brain tumor Surgery program.
04:41It's going to fund seminars such as
04:44this for education and collaboration.
04:46The community and to enhance patient care
04:48throughout the state of Connecticut.
04:51In addition,
04:51pretty excited.
04:52Yesterday was a press release,
04:54a children's book that I wrote.
04:56Trump parkers brainstorm when I
04:59was medical student and then one
05:01that I wrote last year.
05:03Parker's water to ride,
05:04which was part of a new series.
05:07We published it through the children's
05:09Brain Tumor Foundation illustrations.
05:11I had initially done,
05:13but have been redone and done much
05:15better than my initial ones were.
05:18By Trisha Group Day and so Susie is
05:20foundation are her funds are going
05:23towards these publications of these books,
05:25as are our friends at me as miracles
05:28and Love Mark Foundation,
05:30who I'll talk about a little
05:32bit later with these
05:33books are being sent and have
05:35been sent to kids and children's
05:37hospitals all around the country,
05:39so that's something else that that's
05:42usually has been involved with.
05:43So anyway, a very special lady,
05:46very special person to me.
05:48And I, I think you know,
05:50this will be the beginning of a really nice
05:54series of seminars and lectures to come.
05:57So for me as a neurosurgeon,
05:59what I was going to focus on,
06:02which is what my practices
06:04is primary brain tumor,
06:05surgical strategies and give that overview.
06:07And then we'll segue into neuron koleji
06:11radiation oncology and then supportive care.
06:14So what we do here at Yale is really
06:17in terms of our brain tumor practice.
06:20We have the highest volume of brain tumor
06:23patients in the state of Connecticut,
06:25and we perform the most brain
06:28tumor surgeries as well.
06:29We're fortunate to have so many
06:32partners in the community,
06:33and I'm really proud of the fact
06:35that a large part of my practice
06:38in particular comes from other
06:40neurosurgeons in the community.
06:42Other physicians in the community,
06:44and across different system hospitals.
06:46Which I think really goes to the fact
06:49that we're all here to help patients an
06:52we're all here to make sure that they
06:54they receive the best possible care.
06:57As a result,
06:58the cases that we see and that we take
07:01care of tend to be more complex cases,
07:04and so gliomas and eloquent
07:06cortex similar to Susie's tumor
07:07as well as skull based tumors and
07:10more aggressive meningiomas,
07:11which I'll talk a little bit about.
07:14We're fortunate that every tumor that we
07:16biopsy respect at Yale undergoes full
07:18exome sequencing and I am the director
07:21of the Multidisciplinary Tumor Board
07:23and the Precision Brain Tumor Board.
07:25And each week we discuss all of our
07:28patients and really rely on the precision
07:31brain report for making targeted,
07:33ANAN more precision care decisions.
07:38This is just a sampling of cases
07:40that that that I do pretty routinely.
07:43My fellow had pulled my more
07:45recent cases and so again,
07:46you know, glioblastomas here.
07:48I don't know if you can see my mouse
07:52or not and it can you see? Good.
07:56And snuggly blastoma again in the motor area.
08:01Some big CP angle tumors.
08:03Other nasty glioblastomas.
08:05Really aggressive meningiomas here
08:07where we then reconstruct the orbit.
08:10Additional again,
08:12so annoyed wing meningiomas.
08:15Brain stem tumors.
08:16This patient down here had been
08:18operated on several other by
08:20several other neurosurgeons and
08:22then sought care here and again.
08:24Just just a rough example of what we
08:27see and do on a pretty regular basis.
08:31The goals are primary brain tumor
08:33surgery are really quite simple.
08:35Of course,
08:36one is to establish a diagnosis
08:38to help guide further.
08:39Therapy is, but really it's important.
08:42A lot of times to respect as much
08:44tumor as possible to maintain
08:46or improve quality of life.
08:48We also know that that it has
08:50a huge impact in the overall
08:52survival and progression free
08:54survival across various tumors.
08:56And then I'll talk about
08:57a little bit as well.
08:59And then, as Nick will will discuss,
09:02it's really important for clinical
09:04trial enrollment as well.
09:05Because of course,
09:06we all know for for some of the
09:09tumors the treatment does not
09:11stop at just surgery alone.
09:13One thing that I think we have become
09:16really known for is is how do we?
09:18How are we able to remove tumors
09:20that that are otherwise deemed
09:22inoperable like Susie's an?
09:24I think there's there's a few a
09:26few reasons as to why one is we
09:30have sub specialized expertise
09:31and so all we do day in and day
09:34out is brain tumor surgery.
09:35I don't do any other type of
09:37surgery except for microvascular
09:39decompression which is a type of
09:41skull based surgery but beyond that.
09:44Everything I do is focused on brain
09:46tumor surgery and I think there's
09:48something to be said for doing
09:50that literally every single day.
09:52What's more is that we're subspecialized
09:54even based on the type of tumor,
09:56and so for primary brain tumors,
09:58which is my focus, Joe Pete Mayer,
10:00who's in the picture with me,
10:02has since retired and blend to my,
10:04has really stepped in and and
10:06has also been doing a lot of
10:08primary brain tumor surgeries.
10:10But Veronica Chang,
10:11as you can see,
10:12there is the leader of our meta
10:14static program and she focuses on
10:16on metastatic brain tumor surgery.
10:18And so I think that that really
10:20adds a lot of value because
10:22we're treating the patient.
10:24For the the overall cancer or
10:27the overall Uncle logic problem.
10:31There's other types of things
10:32in terms of the resources and
10:34infrastructure that's really important
10:35to making neurosurgery successful,
10:37and so it's standard.
10:38You know, everyone has GPS systems.
10:40I also tend to use an ultrasound,
10:43which gives real time feedback,
10:45and you can see there is a picture of me
10:48there using the ultrasound,
10:49and that's a really large meningioma
10:51and there's the middle cerebral artery
10:53that's black running through it,
10:55so having that frame of
10:57reference is always important.
10:58And then the intra operative MRI.
11:01So we're the only center in the in the state
11:03that has an intra operative MRI really.
11:06Actually quite helpful,
11:07and I'll show an example as to
11:09why even when we do these these
11:11surgeries day in and day out,
11:13it's really nice when the patients
11:15are still on the table to get a
11:17quick MRI that shows if there's any
11:19additional tumor that can be removed.
11:21We also have hybrid intra operative
11:23angio suite capability is if we need
11:25to embolize a tumor and then I think
11:27what really goes back to the sub
11:29specialized expertise is the ability
11:31to do more sophisticated microsurgery.
11:33And I'll show an example.
11:35Those as well,
11:36so frequently doing functional mapping,
11:38motor mapping,
11:39language mapping during awake craniotomy,
11:41for instance with Susie for instance,
11:43allowed us to to safely remove
11:45as much tumor as possible while
11:48maintaining the function of the brain.
11:51And that's what's the goal
11:53in those surgeries.
11:54This was a slide that I was given by Bob
11:58Carter who's the chair of mass general,
12:01and I think this is a really
12:04interesting and good.
12:06Example,
12:06this basically shows that patient
12:08mortality is lowest for cranial surgery
12:11among surgeons who perform cranial
12:13surgery the most and more regularly,
12:15and I think that really does hold true,
12:19particularly for more complex
12:21brain tumor surgeries,
12:22and certainly having a high volume of
12:25cases and and doing these surgeries day
12:28in and day out, I think really does.
12:33Influence outcomes.
12:35This was a patient I shared with Nick
12:38and I think this is a good example
12:40of of why it's so important to be
12:43collaborative and to be collaborative
12:46with with other people in the
12:48Community to ensure that patients
12:49really receive the best care possible.
12:52And so when he presented he was 63
12:54and had an expressive aphasia and
12:56so the top left you can see here
12:59this was his preoperative scan
13:01that was done in December 2018 and
13:04you can see the tumor here.
13:06Left sided GBM underneath the language
13:08area so obviously explaining his aphasia.
13:10This is his post OP CIT and although
13:13it's not an MRI you can make out
13:16that there's still a fair amount
13:19of tumor even after what was what
13:21was said to be a resection.
13:24This is his scan in January,
13:26so a few weeks later and you can
13:29see that the tumor that we see
13:31here is very similar to what you
13:34see in the initial preoperative.
13:36Scan and unfortunately I see
13:39patients like this often an
13:41where they've undergone a quote,
13:43unquote open biopsy, or they pad,
13:46you know, limited reception,
13:48and that,
13:49really,
13:49you know,
13:50is is a shame because there are opportunities
13:54to be more aggressive in others hands.
13:57So Nick actually saw the
14:00patient an noticed how aphasic
14:02he was an thought. Well,
14:04maybe he could have more of a reception.
14:08Performed so he sent him to me and a
14:11few days later had another functional
14:13MRI which allows us to see the function
14:16of the brain and so Broca's area
14:18you can't see it in this picture.
14:20But it was just overlying over here,
14:22and then the arcuate fasciculi us.
14:24You're starting to see there.
14:26I was able to do an awake craniotomy on him,
14:29which I'll show you an example of an
14:32then this is his post opera section,
14:34and of course, having the tumor
14:36removed really did influences outcome,
14:38which I'll show some examples of.
14:40This is a short video, but I think.
14:43Few minutes, not all that short,
14:45but I think a really good example
14:48of what an awake craniotomy is
14:50and how we are able to to really
14:53push the extent of resection.
14:57To a Fox 61
14:59exclusive now it's a nightmare
15:00scenario when undergoing surgery.
15:01Waking up in the middle of the
15:03procedure and knowing what's going on.
15:05But in some cases that can be a lifesaver,
15:08lifesaver and necessary.
15:09We're going to explain that in a moment,
15:11but first we want to introduce you to
15:13a man named Andy Andy is a husband
15:16and father of two kids and a nurse.
15:18Another interesting fact about him,
15:20he's also a professionally trained singer.
15:21He's even performed with his
15:23church choir at Carnegie Hall,
15:24but Andy felt his entire life come to a halt.
15:27When he was diagnosed with brain cancer,
15:30he needed surgery to remove as
15:32much of a tumor as possible.
15:33That tumor in the part of his
15:36brain that controls speech.
15:37And, yes, singing.
15:38That's where a special surgery comes in.
15:40Surgeons at Yale,
15:41New Haven Smilow Cancer Hospital
15:43have perfected a procedure
15:44called in awake craniotomy.
15:45They invited us into the operating
15:47room and we did not hesitate to see
15:49this incredible procedure first hand.
15:52I think you're right.
15:55In an operating room at Yale,
15:57New Haven Hospital. Doctors
15:59are working to remove it.
16:01Tumor from the brain of a 31 year old
16:04man named Andy. He is a singer.
16:07Yeah a husband and father of two.
16:11Surgeries waking up in the middle of
16:14the operation would be a disaster.
16:18Today an anesthesiologist
16:19doing his best to make
16:21sure Andy does just that.
16:25Any Stacy surgeons have
16:27drilled through his skull and have
16:29already begun to remove part of a tumor.
16:32Located on the left side
16:34of his temporal lobe,
16:35the area which controls language.
16:39Medical staff puts a microphone on it if
16:42not for our cameras it so the entire room,
16:45including the operating surgeon,
16:47can hear what Andy has to set.
16:51The procedure is called an
16:53awake craniotomy headache. I
16:54was telling you earlier I I don't
16:57know if it's from the brain surgery
16:59or the fact that I ever had a Cup
17:03of coffee. Is
17:04forming physiologist Brooke Callaghan
17:05sits next to him and begins her
17:07work. I am going to say it sentence and
17:11I want you to repeat after
17:13me. The seashore smells like dog.
17:15The seashore smells.
17:17Interaction can be heard on the
17:20speaker throughout the room.
17:22Neurosurgeon Doctor Jennifer moliterno.
17:25Has mastered multi-tasking,
17:27operating and listening.
17:30Great Doctor Moliterno
17:31and her team worked diligently to remove
17:33as much of the tumor as possible,
17:36which he can't see are critical
17:38microscopic language fibers which are
17:39splayed over the tumor. The best way to
17:42try to remove as much tumor and
17:44preserve his language is to
17:46do it with him away. Get too
17:48close to those critical fibers.
17:49You'll know it. What do you
17:51do in a chair? Problem.
17:58I don't know.
18:00Little bit of confusion,
18:01so that's a great way to me to tell me to,
18:05even though there might be
18:06a little bit of tumor there,
18:08the risk and benefit of removing
18:10that tumor and having him not
18:12speak for the rest of his life.
18:14Tells you exactly what the right decision is.
18:17If he was asleep, I would have
18:19had no idea as Doctor, Marla Turner
18:21continues operating in a safer spot
18:23and he surprises us when this happens.
18:32He does in the middle of surgery.
18:34Andy, a classically trained
18:36singer, shares his talent.
18:42You wanna half hours
18:43into the procedure dramal Aterno decides
18:45it's time to wrap up. The surgeons are
18:47done with the first part of the surgery.
18:49So what's happening as
18:50they're bringing in an hour?
18:52I machine and they're going
18:53to look at the work that they
18:55did and see how much of the
18:57tumor they were able to remove.
19:01Orange window and are able to sit with
19:04Doctor Maternal. She analyzes her
19:07work. The before here is the tumor answer.
19:13You don't have to go back in.
19:17Him being awake allowed us to get that
19:20outcome and preserve his function.
19:23Now Andy was back home with his
19:25family two days after surgery,
19:27five days after the surgery,
19:29he was able to sing at his son's baptism.
19:32He's also saying again with his
19:34church choir and the Yale Camerata,
19:36which is a professional choir.
19:38Just a couple of weeks ago and he is
19:40undergoing chemotherapy and radiation.
19:42But he does say he's feeling
19:44good and of course, warm wishes.
19:46Kim is equal fast.
19:49This is really why we do what we do.
19:54Not every patient needs to be awake
19:56to still have that sort of an outcome,
19:59and so this was a patient.
20:01You can see the date 2013
20:03he was 40 at the time,
20:05father of two and went to another
20:08hospital and had a biopsy because it was
20:11felt that this lesion that you can see here,
20:14which is a glioblastoma Perry 8 real located,
20:16was too high risk for reception.
20:19After his biopsy he was referred down
20:21to me for resection and I thought that
20:24we could safely resect it using a.
20:26And translocal approach and
20:28really preserving the cortex.
20:29This is a good case example
20:31of how even for me,
20:33someone who does this literally every
20:35single day removing tumors, brain tumors,
20:37I can still leave tumor behind.
20:38So this is the beauty of the intra
20:41operative MRI you can see here.
20:43There's a little bit of residual tumor,
20:45a little bit there that really just got
20:48tucked underneath the brain and hidden.
20:50And this is our intra operative
20:52MRI that runs back and forth
20:54between two of our operating rooms.
20:56So I went back while he was on
20:59the table and didn't take much
21:01much time at all and was able to
21:04achieve a gross total resection.
21:06He had, you know,
21:08an MGM T unmethylated tumor.
21:09Pretty poor in terms of
21:12prognosis you would think.
21:14He went on to be managed by.
21:17You are comparing ofner oncology Ann
21:20and underwent stupid therapy and then
21:22ended up getting enrolled in one of our
21:25own homegrown novel clinical trials
21:28that Ranjeet Bindra had developed.
21:30He progressed,
21:31he was enrolled in another
21:34clinical trial and then went on to
21:37bevacizumab and then progressed
21:38about four years after surgery,
21:413 1/2 years after surgery
21:43on Bevis is in math.
21:46It was held that you can see.
21:48Here is his recurrence and
21:50I took him back for surgery.
21:52This time I did a wider resection and
21:55what's nice is is as I had mentioned.
21:58We performed whole exome sequencing
22:00on every patient and so here what you
22:03can see basically is he has a hyper
22:05mutated phenotype and we know that
22:08these tumors can be more suseptable
22:10an more amenable to treatment with
22:12immune mediated checkpoint inhibitors.
22:13So post operatively, he was put on niveau.
22:17He progressed despite Niveau an Avastin,
22:19an I really respected him I in 2019 and
22:22you can see him there with Monica Lawrence,
22:26one of our outstanding or oncology piese.
22:29So he's currently doing well on deficits.
22:31Maben Niveau 7 1/2 years after his
22:34initial diagnosis and so no way am.
22:37I trying to sit here and say that all of
22:40our GBM patients are living 7 1/2 years.
22:44I certainly wish that
22:45was the case in one day.
22:47I am.
22:48Hopefully that will be the case,
22:50but I do know that if he
22:53had stopped at that biopsy,
22:55he definitely would not be here.
22:577 1/2 years later and so
22:59really being aggressive with
23:00surgery and safe with surgery
23:03is incredibly important.
23:04Switching gears real quick
23:06before I hand over to Nick.
23:08This is a patient with what looks
23:10like a convexity meningioma.
23:12He's an older gentleman who
23:14initially had surgery in 2015.
23:16I don't have those scans,
23:18but so was told he had a gross told
23:21over section of a benign grade one.
23:24Meningioma told not to worry about it.
23:272017 he had this growth that you can see.
23:31He had options and actually
23:32went to New York City for those
23:35and underwent radiosurgery.
23:37He had complications with stroke and MI,
23:39and then intractable seizures and weaknesses.
23:41So when he presented to me in 2019,
23:45he had this tumor and he was in a wheelchair.
23:48And so I achieved gross total resection.
23:51His weakness improved and his
23:53seizures improved as well.
23:55But the question is,
23:56could this have been better predicted
23:59an manage differently the first time?
24:01And this is where our work behind
24:04the scenes is really important.
24:06An even within neurosurgery.
24:08And so Moroccan ALS lab,
24:10as well as others,
24:11have really understood what the
24:13somatic genomic landscape of
24:15approximately 80% of grade one
24:17meningioma czar and more recently we
24:19have correlated this with outcomes.
24:22I won't go into the details now,
24:24but would be happy to do so
24:27in a talk in the future,
24:29but basically there's six
24:30subgroups of meningiomas based
24:32on their genomic driver mutation,
24:34and this was published in Science in 2013.
24:37When I was a fellow at
24:40Memorial Sloan Kettering,
24:41I did work that really understood
24:43that more aggressive meningiomas
24:45could present Dinovo or they could
24:47progress from low grade to high grade,
24:49much like gliomas.
24:50Marotte also looked at that from a more
24:53basic science perspective and Anne
24:55found the mechanisms to explain that
24:58usually these tumors are NFT mutated,
25:00were in Mail,
25:01acquire chromosomal instability
25:02or smart Bianco mutation,
25:04and then become Dinovo atypical
25:06meningiomas as opposed to the ones
25:08that harbor Terr promoter mutations.
25:10And progress.
25:13What I was alluding to before was
25:15that in a in a recent publication
25:18of ours a few months ago,
25:21for the first time we have
25:23identified these molecular
25:24subgroups of meningiomas to be
25:26independent predictor of recurrence,
25:28and so we found that there is divergent
25:31clinical courses amongst meningiomas.
25:33For aggressive subgroups,
25:34which are NFT mutated tumors,
25:37trap 7 mutated tumors and those that
25:40have molecules that are mutated in PR.
25:423,
25:43kinase and hedgehog signaling
25:45pathways versus more quiescent
25:47types of meningiomas that have
25:49Kayla for polar two ANS mark be one
25:52commutations and so we have even
25:54found that this holds true amongst
25:57grade one meningiomas and so grade
25:59one convexity chip shot meningioma,
26:01like the one that I just described.
26:04Is not necessarily a grade
26:06one benign meningioma,
26:07and so it's really important for
26:09meningiomas in particular to
26:11realize that they're not as benign
26:13as everyone thinks of them to be.
26:15So when we go back to this
26:17patient could have that.
26:18Could this have been better
26:20predicted and manage the first
26:21time? And the answer is yes,
26:23and so this is an example of our whole
26:26exome sequencing report that we have on each
26:29of our patients tumors and what we found.
26:32As you can see here is first of all.
26:35The Histology with atypical meningioma,
26:37but we found that the patient
26:40had an NF2 mutation.
26:41Ann had chromosomal instability,
26:43particularly with the chromosome 1P deletion,
26:45but quite a bit of copy number alterations,
26:49suggesting that this was a
26:51denovo atypical meningioma,
26:52and so this was a typical from the start,
26:55and typically we followed
26:57these patients either closely,
26:59very closely, or we radiate up front,
27:02which is more more typically what we do.
27:05And so again,
27:07another example of how really
27:09understanding the tumors is important.
27:11An back in the Science Paper 2013
27:13and more recent in a publication
27:16in Journal of Neurosurgery,
27:18we also have shown that these
27:20genomic subgroups can be predicted
27:22based on intra cranial location.
27:25So we use this all the time in our
27:28clinics where just understanding
27:30where the location is will say yeah,
27:33that's likely to be this mutated meningioma.
27:36And based on the neuron College
27:38paper recently,
27:39summers are going to behave more
27:40aggressively and it really does
27:42influence how we treat these patients.
27:44Of course, not everything ends with surgery.
27:46I wish that it did,
27:48and that you know patients could
27:50be cured and move on,
27:51but unfortunately that's not the case.
27:53And what we deal with,
27:55and so that's why we have our
27:57precision brain tumor treatment
27:58program an our tumor board that
28:00that we need and discuss weekly.
28:02And of course,
28:03we could not do what we do
28:05without support of our patients.
28:07And so Connecticut Brain Tumor
28:08Alliance has been amazing supporting.
28:10Some of the meningioma research
28:12that I just discussed,
28:13especially all the clinical correlations,
28:15research that I just discussed
28:17as well as patients themselves.
28:18The Love Mark Foundation on TV
28:21and Jamie Lovemark dream Love
28:23Mark is a is a PGA golfer.
28:25They've donated nearly a half $1,000,000
28:27with every penny going to our patients,
28:29and so we can't thank them enough because it.
28:32It really does help in terms
28:35of of their care.
28:37And a special thank you to our primary
28:40brain tumor surgery clinical team.
28:42So if and when you ever speak to
28:45someone from my office, Jillian Bongard,
28:48who's all the way to the left,
28:51she is one of our APR ends.
28:54She's an absolute superstar.
28:55Marcy Diggs, another superstar.
28:57Actually,
28:57they're all superstars Kelly Mishad,
28:59who is one of our Nurse
29:02coordinators Marcia Williams,
29:03and then Amorini Pina,
29:05who is our administrative assistant.
29:07We can be reached at anytime and
29:10so any questions just feel free
29:13to give us a call or to email me.
29:16Alright, so that is the surgical overview.
29:20Next we have Doctor Nick Bond and
29:23who is a new oncologist at Yale.
29:26He has practiced also.
29:29Let me stop sharing.
29:31At Trumbull smilow.
29:35Anne has been a really
29:37good friend of mine and
29:38Ann is really, really good doctor.
29:42Well, thanks for those kind words, Jen and.
29:46Thanks for the opportunity
29:47to participate in this talk.
29:49It's really been not privilege of mine
29:51to be part of the Yale brain tumor team.
29:54For the last two and a half years now and
29:57work together with such other fine docs,
30:00I really feel like we're making a
30:02difference for folks here in Connecticut,
30:04so only start sharing my screen here.
30:08Alright.
30:11I'm going to provide an update
30:13in brain tumor management from
30:15the neurooncology perspective,
30:16and I'll be specifically focusing
30:18on glioblastoma, the most common
30:21malignant brain tumor in adults.
30:24Do not touch on other brain tumors such
30:26as meningioma in this particular saw.
30:30Here's my disclosure. Slide.
30:32I participate as Aryel investigator for a.
30:35Nonprofit organization called Global
30:36Coalition for Adaptive Research.
30:38Orji car running a large clinical trial,
30:40which I'll speak on.
30:41Also do consulting for Novocure and Biocept,
30:44and have no stock or financial
30:45interest in any of these companies,
30:48and I produced this presentation.
30:50So I'm going to start by just
30:52touching base on some basic overview
30:54information and clear blastoma so
30:56I mentioned it's the most common
30:58malignant primary brain tumor in adults.
31:00The incidence is around three
31:02folks per 100,000 per year,
31:04and so we estimate that there's
31:07probably 100 to 150 new cases
31:09per year in Connecticut.
31:11And.
31:12So consider brain cancer arising from the
31:16cancerous transformation of glial cells,
31:18which are normal cells that exist in
31:20the brain and help kind of support the
31:24brain structure and release hormones
31:26that maintain neuron integrity,
31:28and these cells generally don't
31:30divide in adults,
31:31but they can develop mutations or
31:34abnormal chromosome numbers that
31:36cause them to become cancerous
31:38and develop a glioblastoma tumor.
31:40And once the tumor has developed.
31:43By the time it's causing symptoms
31:45and discovered it is both nodule
31:47and also infiltrating cells.
31:49So by infiltrating I mean tumor
31:51cells that are spreading into
31:54the normal tissue of the brain,
31:56and so the really the problem
31:58of glioblastoma is that while
32:00the visible tumor on an MRI can
32:03be removed and doctor maternal,
32:05so they're up some really neat
32:07techniques to achieve that.
32:09Now, unfortunately,
32:10there will be residual glioblastoma
32:12cells that.
32:13Exist in the brain and could
32:15regrow into new tumors or cause
32:17more neurological disability by
32:18spreading throughout the brain.
32:20So it's my job as a neuro oncologist
32:23to try to provide chemotherapy
32:24and other treatments to slow the
32:27growth of those tumors cells,
32:29or really ideally completely inactivate them.
32:32And so again,
32:33it's a disease which can't be
32:35cured by surgery,
32:36but the extensive surgery is
32:38critical with complete removal
32:40of all the visible tumor.
32:41Really providing a much better chance for
32:44the patient to be a long term survivor.
32:47And following removal of the tumor,
32:49common treatment options,
32:50or radiation and chemotherapy again,
32:52I'll be touching on the chemotherapy
32:54and my colleague Doctor Mcgibbon
32:56will be touching on the radiation
32:59on the next segment.
33:00So it glioblastoma is typically found by
33:04causing a first time seizure in an adult.
33:07So anyone from.
33:10Kind of adolescents on that
33:12has a first time seizure.
33:13A common cause of that would be a brain
33:16tumor and then specifically glioblastoma.
33:18That would lead to imaging such
33:20as a CAT scan or MRI showing a
33:23mass within the brain tissue.
33:25An characteristic findings of this,
33:27including a dark middle area of
33:29the tumor called the necrosis,
33:31is consistent with glioblastoma,
33:33so we could know even preoperative that
33:35a tumor looks likely to be a glioblastoma,
33:38but we need the tumor to be removed
33:41and pathology testing to be done
33:43to confirm that before proceed
33:45to further treatment and then
33:47beyond seizures other common.
33:49Presenting symptoms could be.
33:51Visual changes loss of part of the
33:53peripheral vision or visual field and then
33:55also new onset cognitive impairments.
33:58So a common story would be someone
34:00that seemed to be developing memory
34:02loss or almost dementia like symptoms,
34:04symptoms worsening over weeks to a
34:06few months that can be due to brain
34:09dysfunction from a glioblastoma brain tumor.
34:14And so in regards to prognosis.
34:16I had mentioned the extensive
34:18surgical resection is important,
34:19but another critical factor is simply age,
34:22age of a patient and.
34:24Studies have indicated that an age of
34:2770 is kind of a cut off benchmark.
34:30So if a person is diagnosed
34:33young 69 and younger.
34:35They may be able to tolerate
34:37more intensive treatment,
34:38more extensive radiation,
34:39higher doses of chemotherapy compared
34:41to someone who's 70 and older,
34:43and I like to think of
34:45this similar to you know,
34:46dosing of Tylenol for
34:48Pediatrics versus adults.
34:49So you can't give a child an adult
34:51dosage of Tylenol or mot ring.
34:54You have to base the treatment on the
34:56age of the patient and their body size.
34:59So again, looking at a patient,
35:01I'm going to treat someone
35:03differently based on their age.
35:05And then.
35:07Their disability of a person could
35:09depend on where the tumor is located,
35:12so ideally the tumor is grown in a place
35:15where Jen can completely respect it,
35:17but in some cases tumors will arise
35:19in more central areas of the brain,
35:22the thalamus or brainstem,
35:23and in these areas only a biopsy can be done,
35:27and so neurological disabilities
35:28unfortunately will persist after the
35:30diagnosis and be more difficult to treat.
35:32And then there are some molecular
35:34factors which are of critical
35:35for understanding the prognosis.
35:372 main factors with glioblastoma
35:39are The MGM T status.
35:41And IDH,
35:42one status MGMT is an enzyme that
35:44can repair the damage done to tumor
35:47cells by Thomas Ola, my chemotherapy.
35:50And so patients have high amounts of
35:53MGMT enzyme within their tumor cells.
35:55They'll be relatively resistant
35:57to temodar chemotherapy.
35:58It won't work as well,
36:00and those patients generally have poorer
36:04prognosis for long term survival.
36:07And so his doctor Will Turner had
36:09mentioned we do whole exome sequencing
36:12or essentially DNA sequencing of
36:14tumor cells after they are removed.
36:17To understand what mutations exist
36:19in the tumor beyond what their MGM
36:22T molecular statuses and their IDH
36:24one mutation status and we look for
36:27mutations which could be targeted
36:29by new generation chemotherapy.
36:31So in a small percentage of glioblastomas,
36:34unfortunately less than 5%.
36:35At this point there do exist mutation
36:38and such as B. Raff and NTR K.
36:41Fusion,
36:41for which new generation chemotherapy
36:43exists can cross the blood brain
36:45barrier and be effective to treat
36:47those tumors and delay progression,
36:49sometimes for years.
36:50So we want to test every patient
36:52for their genomics of their two
36:54men to understand if they would
36:56have a treatment option for one of
36:59these new treatments and further
37:01just understanding what is the
37:04prognosis of this tumor.
37:05And so it now the standard therapies,
37:08which I haven't unfortunately,
37:10are fairly limited.
37:11I feel jealous of my medical
37:13oncology colleagues who may
37:15have a number of treatments,
37:17like for example breast cancer has more
37:20than 30 approved drugs to treat it,
37:23whereas for glioblastomas,
37:24unfortunately we only have a few drugs
37:27FDA approved for treatment in one device,
37:30and so the initial standard of care for
37:33glioblastoma was established in 2005,
37:35which combines tennis
37:36olamide or TMZ chemotherapy.
37:38Along with radiation treatment for the
37:40initial phase of treatment and then
37:42monthly maintenance rounds of Tim's Olamide,
37:44and this did provide a few months
37:47longer survival on average for
37:49patients with a subgroup of patients
37:51with the low energy and she enzyme
37:54level surviving for longer.
37:55Then in 2009.
37:56But this is a map or a vast and was approved
37:59by the FDA for use in recurrent GBM.
38:03This is a drug which will bind to a
38:05hormone called veg F and slow down
38:07blood vessel growth around tumors
38:09and basically starve tumors of oxygen
38:11and so by treating a patient with.
38:14This is a map you can slow the
38:16growth of the tumor and in some
38:18cases completely stabilize it with
38:20an effect being an average of a few
38:23months of further survival time.
38:24Some patients could go even.
38:26For many months, if their tumors acceptable,
38:29but generally speaking it's a.
38:30It's another three to four months
38:32of longer survival time.
38:34A person could get with that.
38:36This is a map.
38:37And then in 2018 or the Optune
38:39device was approved.
38:40So for some patients that are
38:42able to use the Optune device,
38:44it's a device of four arrays
38:46which are placed on the scalp
38:48creating electrical field,
38:49which interferes with the mechanical
38:51process of cell division.
38:52So as tumor cells attempt to
38:54divide from 1 cell into two cells.
38:57Applying electrical fields can block
38:59that process from happening and cause
39:01the cell to ultimately self-destruct
39:03and not complete the division process.
39:05So Optune is now used for
39:08patients following radiation
39:09treatment along with Tim's Ola.
39:11My chemotherapy with that M as
39:13Olamide damaging the DNA and then the
39:15option device slowing or preventing
39:17the cell division process and with
39:20that current standard of care,
39:22on average we're looking for about
39:24a two years survival time for
39:27a newly diagnosed patient.
39:28And for patients over 870,
39:30they may not be able to tolerate
39:32Timmons Olamide or or they may have
39:35side effects from these chemotherapies,
39:36so their survival on average maybe
39:39about one year one you know 1 to
39:411 1/2 years and then for patients
39:43with The MGM T methyl lated status
39:46or low levels of The MGM T enzyme.
39:48I'm looking for an average at
39:50least three years survival from
39:52diagnosis for that patient,
39:53so we want we want more drugs,
39:56and we want better options.
39:57And we want non toxic drugs.
39:59So people can maintain their quality
40:01of life while also getting the Disease
40:04Control and not having progression.
40:06So this is where clinical trials come in.
40:08We have the opportunity to participate in
40:11a number of clinical trials here at Yale,
40:14and I'm going to touch on a few
40:16which I am excited about,
40:18the first being the GBM agile
40:20clinical trial GBM.
40:21Agile is not only a national
40:24but an international effort.
40:25To treat newly diagnosed and
40:27recurrent GBM and the way
40:29the study is designed as that is
40:31a master protocol that can open up
40:34new experience experimental arms
40:35for new drugs and new treatments.
40:38So currently for clinical trials,
40:39one drug would have its own clinical
40:42trial and need to recruit half of the
40:45patients for the standard of care.
40:47Half of the patients for
40:49the experimental treatment.
40:50However, in GBM agile net,
40:52there may be many arms of experimental
40:54therapies all referencing one standard.
40:56Common standard of care therapy.
40:58And as I showed on the current slide,
41:01unfortunately our standard Care
41:03isn't really not acceptable to me
41:05and I think that the GBM Agile
41:08offers a chance to move new drugs
41:10forward or understand if new drugs
41:12are effective with exposing less
41:14people to the placebo or just the
41:16common standard oral treatment.
41:18So currently we have the study
41:20opening you're looking at drug
41:22called Regehr Alphanim which inhibits
41:24multiple enzymes within a cell.
41:26Responsible for tumor cell growth and
41:28regular alphanim is being compared
41:30to Tim's Olamide and maintenance.
41:32Newly diagnosed patients and also
41:34for recurrent GBM treatment and then
41:37two other drugs will be entering
41:39into the GBM agile study shortly
41:41within the next few weeks here at
41:43Yale and those drugs are fellow 83,
41:46a drug similar to Tim's Olamide
41:48and Paxil listed,
41:49which is another molecular inhibitor
41:51blocking a molecule called P I3 trainees,
41:53so we're excited to offer this to patients.
41:58We haven't screening,
42:00only diagnosed patients offer
42:02participation in this.
42:03And then another line of therapy
42:05that we are actively looking into
42:08his immunotherapy for glioblastoma
42:09treatment and Yale has participated in
42:12the initial studies of immunotherapy
42:15for treatment,
42:16the checkmate studies comparing Opdivo,
42:18also known as new volume AB checkpoint
42:21inhibitor drug versus standard of care,
42:23chemotherapy's an unfortunately in
42:25these studies in the volume app
42:28was not proven to.
42:30Improve improve survival for patients
42:32or lead to you no longer progression
42:35time until progression or or maintain.
42:38Maintain health for longer and so.
42:41Really,
42:41the drug it seems to be highly
42:43effective in some cancer types
42:45such as Melanoma and lung cancer,
42:47but in affective in glioblastoma an
42:49the study was designed really before
42:51there was a basic science understanding
42:53of of the immune system of the brain.
42:55It was just hoped that this this
42:57would be a treatment for patients,
42:59but we now know that there are some
43:02factors in cells within the brain
43:03tumor that can block the effect
43:05of these particular immunotherapy
43:07drugs when they used on their own.
43:09And so new drugs are being developed
43:13which I'll touch on in the next slide.
43:16But it also appears that now we now
43:18believe that combining immunotherapy
43:20with surgery or radiation for recurrent
43:23GBM may improve their effectiveness.
43:25Small study was published utilizing
43:27she Trudeau with surgery or with
43:29repeat radiation,
43:30a second on radiation and patients
43:33appear to have longer survival times
43:35and better outcome with that strategy.
43:40So with our new clinical trial.
43:43It's designed to block TIGIT,
43:44which is a new molecule involved in
43:47immune system function in the brain.
43:49The molecule is actually discovered
43:51in the course of research for multiple
43:53sclerosis through a research effort
43:55headed up here by David Hafler that
43:58you're of the Yellow Neurology Department,
44:00and it turns out in patients with
44:02multiple sclerosis they have low
44:04levels of digit and an overactive
44:06immune system in patients with
44:08glioblastoma have high levels of
44:10digit and a suppressed immune system.
44:12So the hope is that by blocking
44:15TIGIT we can activate the immune
44:17system in the brain and now will have
44:20effectiveness to treat GBM tumors.
44:22So the study has been designed
44:24to use an anti TIGIT antibody or
44:27a molecule that block TIGIT.
44:29Combine that with a standard
44:31checkpoint inhibitor called a B122
44:33and our hope is that this will be
44:35a new effective treatment and a
44:37breakthrough for immuno therapy for GBM.
44:43And then of course,
44:45a key factor in glioblastoma management
44:47is adjunctive care and supportive care.
44:50Understanding how corticosteroids,
44:51such as dexamethasone, can impact a patient.
44:54Steroids can be helpful
44:56to reduce brain swelling,
44:58but they can have harmful side effects
45:01such as weakening the immune system,
45:03causing weight gain, causing fragile skin,
45:06and cause immunosupression so,
45:08close management of dexamethasone is key,
45:10it's something I.
45:11Think about every day for most
45:14of the patients that I see.
45:16Are they on text about the zone?
45:19What's their dose?
45:20Can it be reduced?
45:21Isn't necessary and just understanding
45:23how to optimize for an individual
45:25patient what their best line
45:27of treatment is and then anti
45:29convulsant medication also may
45:30be necessary for some patients,
45:32particularly anyone who has
45:33suffered a seizure at the onset of
45:36glioblastoma or anyone with seizures
45:38or suspected seizures at any points
45:40need to be on an anti seizure.
45:42Medication and understanding the
45:44side effects of these medications
45:46really can be critical to optimizing
45:48someone's quality of life,
45:49and if someone is having side
45:51effects on a seizure medication,
45:52it's best to change that method
45:55utilized a different Med rather than
45:57have the patient you know have a poorer
46:00quality of life from from side effects.
46:03Then I actively utilized counseling
46:04for a number of patients of mine,
46:07Brian, who was also on the
46:09call and be speaking later,
46:11has been just truly wonderful to work with.
46:14The trouble he's been extremely
46:15helpful with so many patients in mind,
46:18and I really think that this is an
46:21important component of treatment,
46:22which I'm proud that we offer.
46:24It's Milo.
46:25And then of course, physical therapy,
46:27rehabilitation, exercise,
46:28or key,
46:29I advise patients exercise as
46:31much as possible.
46:33Doctor Paris is an example in my
46:35mind of someone who has been able to
46:38maintain exercise after diagnosis
46:40and a truly believe it's been very
46:43helpful for for her up to this point.
46:45So I speak with everyone else about
46:48exercise and fitness and see if
46:50we can optimize that for folks.
46:53And then of course also optimizing
46:55nutrition and utilizing our nutritionist
46:58Rebecca and the tribal office.
47:01Alright,
47:01I will wrap up at that point on my talk
47:04and I think I'll pass it back to Jenn.
47:10For moderation, yes, and
47:12I'm going to pass it right
47:14along to Doctor Mcgibbon,
47:16who is also a friend,
47:18an A radiation oncologist
47:20out of Greenwich primarily.
47:22Yeah, thanks so much introduction
47:24we try to share my screen here.
47:29See can see see that OK switch to. Slideshow.
47:39OK look OK.
47:42So yes, thanks again for the introduction,
47:45so I have the pleasure of
47:47starting work for Yale.
47:4912 years ago, up in the Trumbull area
47:51and First start working with Doctor
47:54One in there and Doctor Montero.
47:56And now the medical Director
47:58for Radiation Oncology,
47:59Greenwich Hospital and getting to
48:01extend the smile care down this
48:03way and actually I have a personal
48:06connection with Doctor Bear says,
48:08well, kind of highlights,
48:09the nice coordination mean the system.
48:12Are within the system because colleague
48:13of mine and the radiation side Dr.
48:15Contesti was actually the 1st to see her,
48:17but she lived closer to tremble
48:19and so I got to see her and offer
48:21that same kind of yield quality of
48:23radiation there and so it's wonderful
48:25to see her doing doing so well.
48:29Can I just talk through at least some
48:31of the roles of radiation therapy
48:33in the treatment of brain tumors?
48:36I don't have any disclosures,
48:38by the way,
48:39so where does radiation therapy fit
48:40in so in benign tumors sometimes will
48:43do so called definitive radiation
48:45as a replacement for surgery,
48:47or as it's been shown earlier in the talks,
48:50will do post operative radiation therapy.
48:52If there's been left behind or were
48:54worried that it will progress in Casa
48:57problem and more commonly were involved
48:59in malignant tumors like the glioblastomas.
49:02Either after a biopsy has been done or
49:05after when the more impressive surgeries,
49:07like the maximum safe resections
49:09like Doctor Moliterno,
49:11was highlighting.
49:11And of course,
49:13we're always collaborating with Neurooncology
49:15as well for concurrent chemotherapy
49:18and other treatments of that type.
49:20For us,
49:21the people become familiar with this.
49:23If you only see my cursor on the top
49:25left is a picture of one of our common.
49:28It's called a linear accelerator.
49:29It's the machine that shoots the
49:31X Rays and we have what looks
49:33like a black table top here,
49:35and patients will lie on that
49:37and will create a face mask.
49:38And this is just one example of a mask.
49:41We have different ones,
49:42some have opening some,
49:43some do not,
49:44but the idea is we're going to be
49:46using radiation for multiple days.
49:48We need to make sure the X Rays are
49:51hitting the exact same spot each time.
49:53And so we need something to hold the
49:55head and shoulders in the same position.
49:59To go further from there,
50:01you know we need to really customize
50:03the X Ray beam so they're only
50:05shooting where we want and trying
50:07to spare the surrounding tissues.
50:09And we do that if it look in
50:11where the Red Arrows pointing,
50:13that's the head of this machine,
50:15and in that there's this object to the right.
50:18Scalding multileaf collimator and
50:20it's a series of stacked leaves metal
50:22leaves that can create any shape
50:24that we want within a rectangle,
50:26and between creating different
50:27shapes with that MLC.
50:29And moving the actual head of the
50:31machine to different angles around the
50:33patient and adjusting the intensity
50:34of the beam at each of those angles,
50:37we can get a very fancy
50:39dose distribution inside.
50:41And Furthermore,
50:41we can take what look like the arms
50:44of the machine here on each side and
50:46spend the machine around a patient each
50:48day before treatment and take an image.
50:50We see a couple of examples in the left here,
50:52so we can make sure that how we've planned
50:55the person based on a special CAT scan
50:57as to exactly how they're lined internally,
50:59so we have the mask to
51:00help get us in position,
51:02but we don't rely just on that.
51:04We go further with imaging to make
51:06sure we are right on target before
51:09we turn the beam on that day.
51:11I guess I mean helpful.
51:13Just go through 2 examples,
51:15one glioblastoma,
51:15an one meningioma,
51:16and I think they both really highlight
51:19the close collaboration that's
51:20necessary and that we really enjoy
51:22in this yell system and a cross
51:25between New Haven and the satellite.
51:27So in this one case,
51:28the patient was in with headaches
51:31and difficulty with concentrating.
51:33And an MRI was performed which
51:35showed this lesion on the left side.
51:39And you notice that there's one type
51:41of sequence samaritas called T1.
51:42It's with contrast, reshoot, Diane,
51:44but there's another type of scenes called T2.
51:46And if you look at the top left
51:48in the top right,
51:49this has taken a similar slice,
51:51but it looks quite different between the two,
51:53and it's really highlighting the
51:55bulk of the tumor on the left,
51:57but showing some of the fluid dynamics
51:59and swelling around on the right,
52:01which becomes important for
52:02us from radiation planning.
52:04And you know what's the?
52:05What's the basic algorithm here?
52:07We want maximum safe surgery.
52:09Then there's a gap for healing
52:10about three to six weeks,
52:12and then we start with Tim's
52:14online telephone line chemotherapy
52:16and radiation at the same time.
52:17And then we keep going with
52:19the time zone line afterwards,
52:21and then possibly do those
52:23alternating electrical fields that
52:24Hunter Biden was talking about.
52:26So when the patient comes to us,
52:28they've already we are established
52:30with their performance test is like and
52:32some of the special markers like that.
52:34MGM T that was mentioned and.
52:36We see if there are eligible
52:38for any clinical trials.
52:39And then we get into what
52:42style of radiation should
52:44we offer? And the standard ratio
52:46that we give is 30 treatments.
52:48It has an initial phase with slightly
52:50bigger fields and a second phase called
52:52the Cone down with smaller fields,
52:54but it's 30 individual days
52:56done Monday to Friday,
52:57weekends off and at each
52:59treatment takes about 15 minutes,
53:00and so it's about a six week course.
53:04And there are some special
53:05circumstances where will do.
53:06It's called hypo fractionated radiation.
53:08We're using a shorter course or it's
53:10a little higher dose per day and
53:12we have that as a potential too,
53:14and that's part of the multidisciplinary
53:16discussion as to really which is the best
53:19and how can we pair this with chemotherapy.
53:22So the first thing we do,
53:24we generally meet the patient
53:25after surgery and if else is and
53:28they've usually gotten an MRI with,
53:29they've come to us outside.
53:31We get one and we really want to see.
53:34OK, what's the difference now in the
53:36in the cavity and even see compared to
53:39before that you know this has been.
53:41Debo quite a bit.
53:42There's a little bit of a white here
53:44that's more postoperative change,
53:46not necessarily cancer left behind
53:47and you can see the difference now.
53:49Things look again between the T1
53:51for these left room, just empty 2.
53:53And when it comes to radiation,
53:55the principle is we were going
53:57to get a CAT scan.
53:59We're going to overlay the
54:01various Mris and so here.
54:02We've taken in this blueish color is
54:04we've copied in what the tumor look
54:07like before the surgery and now copy
54:09it onto the MRI from after surgery.
54:11And then we draw in more in the middle here.
54:14This pink drawing.
54:15OK?
54:16What are we concerned about
54:17just from the MRI afterwards we
54:20combine these things on the right.
54:22And then we get to work with
54:24our physics crew.
54:25And if you kind of adjust your eyes
54:28from this is a 3D or 2D representation
54:30of a 3D process so you can see here.
54:33It looks like someone's face with the
54:35nose and the eyes and these pink and
54:38blue is highlighting where the tumor is.
54:40The red dashed line is simulating
54:42the Ark as the machine moves around,
54:44and these yellow little funny rectangles.
54:46That's that MLC,
54:47creating the different shapes
54:48as it goes around.
54:50So manipulating all those things
54:51in the field design process.
54:53We get.
54:54This type of dose distribution
54:56you can see on the right.
54:58So now we've taken those drawings.
55:00We've actually created real dose.
55:01We can see that we're trying to
55:03spare the rest of the brain and
55:05really concentrate what's in here,
55:07and this is a multi day process
55:09to get things right between our
55:11planning session when we're ready
55:13to ready to start treatment.
55:15And as part of the review,
55:17we look at something called
55:18the dose volume histogram,
55:19where every structure go to the next slide.
55:21Every structure that we care bout
55:23between what's called the PTV,
55:24which is what we're planning to target.
55:26The optic nerves eyes the Coakley,
55:28the brainstem, anything that
55:29we care about that's in there.
55:30We can model. How much dose is
55:32going to it and we have very strict
55:34criteria about how much is too much,
55:36how much can be repaired and we keep
55:39going round and round and round till
55:40we have a plan that meets all the goals
55:43while maximizing goes to the to the tumor.
55:49Move on to a meningioma, some enjoy the say.
55:51The overall treatment concept here.
55:53If we go to the NCCN guidelines.
55:57The just read this here, so trim
55:59selection should be based on assessment,
56:01variety of interrelated factors,
56:03including patient features, tumor features,
56:04potential for causing or logic consequences.
56:07If untreated presences,
56:08various symptoms and treatment
56:09related factors such as neurologic
56:11consequences from surgery, radiation,
56:12likelihood of complete resection.
56:14Can we do complete irradiation
56:16with different techniques?
56:17Treatability with Jennifer Progressives, etc.
56:18So you can see it's very complicated.
56:21We really need that multi display
56:23input which is ending with the
56:25national lines actually speak to that.
56:28And that's what we practice at Yale for sure.
56:30Meeting every week.
56:31I'm talking about individual patients.
56:33How can we really get this so it's
56:36customized and we have the best combination?
56:40For us generally,
56:41if you know meningiomas coming in and and
56:43Doctor Martin give a lot more details,
56:45I'm being a little broad here,
56:47but if something is small and doesn't
56:48seem regression some progressing,
56:50sometimes it can be observed,
56:51but usually it's surgery
56:52that we're leading with,
56:53and if it turns out to be a grade 1/2,
56:56which is the lowest kind of least aggressive.
56:59Then we can sometimes observer
57:01sometimes to radiation.
57:02If it's great to, or almost definitely
57:04doing radiation of his grade 3,
57:06or definitely doing it,
57:07and occasionally radiation would
57:08be a replacement for surgery.
57:10But that's not as not as common.
57:13And in terms of UPS,
57:15the technique usually similar
57:16to the glioblastoma.
57:17It's a daily treatment for
57:19anywhere from 25 to 30 sessions.
57:21Sometimes if it's small enough
57:22and we feel more confident that,
57:24say, a grade one tumor,
57:26although like Doctor Martin was pointing out,
57:28sometimes we're wrong about that.
57:30So with very highly selected
57:32patients sometimes will do
57:34radiosurgery as a single treatment.
57:36And here's a nice collaboration example,
57:38so we have a 41 year old female
57:40who presented with eye symptoms.
57:41If you look this MRI,
57:42there's clearly something
57:43is a little different here.
57:45These images always like you're looking
57:46so from their feet towards their head,
57:48so the left side of your screen
57:50is the right side of their body.
57:52So this right side.
57:53There's something different
57:54here compared to here,
57:55and this is the I here's
57:57the optic nerve coming back.
57:58If you like these kind of black arrows here,
58:00these are very important blood vessels.
58:02If you look at this object here,
58:04this is the brain stem, so this is.
58:06A very very critical area and
58:08this lady in particular had some
58:11worsening vision over about a year,
58:13but then it really escalated pretty quickly.
58:16Scott,
58:16the MRI showed that that
58:18a nasty appearing lesion,
58:20and so the question is what to do?
58:22Should we do surgeries to do radiation?
58:25Well,
58:25at this point the patient
58:27has very serious symptoms.
58:28An radiation is not going to
58:30reverse the vision symptoms.
58:31In that case,
58:32it's radiation for meningioma is excellent at
58:35stopping it from growing further,
58:36and can sometimes have a
58:38little shrinkage over time,
58:39but it can't have a rapid shrinkage,
58:42can't reverse symptoms
58:43quickly like she need it,
58:44so surgery was the right call.
58:47Thankfully, she met with Doctor Moliterno
58:50did took out as much as could be respected.
58:53That's all those very delicate
58:54structures have to be so careful
58:57about as much as taking out as could
58:59be turned out to be great one and
59:02which was great is that her vision
59:04improved dramatically after surgery.
59:05Had a little bit of double vision left,
59:08but the cutie was excellent and
59:10moved on to a post offer of MRI.
59:13And the post off of MRI,
59:15the pre 8 properties on the left and
59:17post office on the right and be easier
59:20to tell with with multiple slices.
59:22But you get the sense that there's
59:24a little something left behind
59:25'cause we're so close to these
59:27special arteries and so on,
59:29but it's been debunked and it's had a
59:31huge impact in her quality of life.
59:33So now radiation comes in.
59:35How can we help out too?
59:36Now stabilize this and and take
59:38it to the next level and so on.
59:41A very similar process to what
59:42I showed in the glioblastoma.
59:44There's a modeling process making a mask.
59:46Creating a CAT scan and MRI who create
59:49these beams in the center and then we
59:52have ultimately a dose distribution.
59:55Now we look again.
59:56This color cloud here.
59:57Here's what I here's that
59:58optic nerve coming back.
60:00So we're we're sculpting dose away
01:00:02from the brain stem back here and
01:00:04the optic nerve here so again,
01:00:05having this concentration of
01:00:07dose where we're most worried
01:00:08and then sculpting those away.
01:00:10From the areas that are critical,
01:00:13but again an outcome which is
01:00:15really only possible with this
01:00:17special collaboration between
01:00:18you know neurosurgeon radiation,
01:00:20or in other cases with the
01:00:24neurologist as well.
01:00:26I just want to quickly highlight something
01:00:28from one of my colleagues size picture
01:00:30earlier Doctor Bindra and Doctor Schiff.
01:00:32Just it's nice to see within the L
01:00:34system all the things were already
01:00:36mentioned and there's just a lot of
01:00:39work this homegrown aspect looking at.
01:00:41How can we use our resources to
01:00:42develop new new therapeutics or not
01:00:44only participating in trials that
01:00:46other people have design things forward?
01:00:48We're innovating,
01:00:49he ran and bring the best for our
01:00:52patients in this particular trial
01:00:53is for people with a.
01:00:55Recurrent type of glioma.
01:00:57But it's just wonderful to see this
01:01:00this kind of effort and collaboration.
01:01:02And that's it for my portion of time.
01:01:05Thanks so much for including me.
01:01:10Thanks so much, Bruce.
01:01:12So will hold all questions to the
01:01:15end an our last panelist in our last
01:01:18talk is Brian Jenn who is a licensed
01:01:20social worker with Smilow as well.
01:01:35So thank you for having me.
01:02:00Sorry, a little technical difficulties,
01:02:02but here I have my screen here.
01:02:09Can you guys hear me OK?
01:02:11Thank you. OK so I'm Brian.
01:02:13I'm one of the clinical
01:02:14social workers at Smilow.
01:02:16I work mainly out of the Trumbull office
01:02:18but I also work at the Greenwich Office
01:02:21and it's my privilege to work with.
01:02:23Doctor Blunden and Doctor McKibben,
01:02:25and my talk is going to be
01:02:27specifically about supporting
01:02:29patients and families through this
01:02:31process and all the different ways
01:02:33we can try to support and help.
01:02:35Through this difficult journey,
01:02:37so I have no disclosures my.
01:02:47My focus will really be on going
01:02:49through the framework and then practical
01:02:50resources and ways that we can support.
01:02:53So oftentimes when we're dealing
01:02:54with the tumor or cancer diagnosis,
01:02:56the question is, how do we cope?
01:02:58How do we get through this?
01:03:00How do we make it a little bit easier,
01:03:03a little bit better and the truth of
01:03:05it is it's a really complex question.
01:03:07It really depends on who's
01:03:09involved in the family system,
01:03:10what experiences do they bring to the table?
01:03:13What losses or previous diagnosis
01:03:14had they gone through as a family?
01:03:17And also where they are at when diognosed,
01:03:20it's an incredibly.
01:03:23Difficult proposition to sort of bring
01:03:25this all together and really address
01:03:27what is most pressing at any given time.
01:03:29There's a lot of different processes
01:03:31that have to come together to
01:03:33shape what coping is,
01:03:35so the framework that I use,
01:03:37the model that is most helpful
01:03:39is family systems illness,
01:03:40modeled by John Rowland and I think
01:03:42he developed it while he was at
01:03:44Yale and then went on to University
01:03:46of Chicago and why this is such a
01:03:49useful way of sort of approaching
01:03:51a family and an individual who.
01:03:53Is suffering through an illness and
01:03:55specifically like a cancer diagnosis is
01:03:58that it breaks up the dimensions and
01:04:00multiple ways and sort of interweaves
01:04:02it together so at the center of it
01:04:05you have the individual you have the
01:04:07individual whose life has changed
01:04:09and has been altered in a significant
01:04:11way and then bring that brings with
01:04:14it emotional turmoil at times.
01:04:16There's also changes in terms of
01:04:18what is a person going to process,
01:04:20how are they going to deal with
01:04:23their basic needs.
01:04:24What are the practical concerns that
01:04:26they have and then it alters every
01:04:29relationship within their sphere.
01:04:31These relationship includes their spouses,
01:04:33their children, their work,
01:04:34their friendships and also their
01:04:36developing new relationships.
01:04:37And the most important one is is with
01:04:40their medical team and developing
01:04:43that collaboration to work together
01:04:45to achieve a goal together.
01:04:47So it also recognizes that each
01:04:49stage and phase is different.
01:04:51Often times when I meet with patients,
01:04:54it's not. Always when their first diagnosis.
01:04:57Sometimes I'm meeting with somebody
01:04:58who's in a stage of remission and it
01:05:01looks very different from somebody
01:05:02who is processing a new diagnosis.
01:05:05You know you can see this sort
01:05:07of onset category that he puts,
01:05:09and oftentimes I sit with patients,
01:05:11and I say it's like being shot
01:05:13out of a cannon. It's it's.
01:05:15There's no time to prepare.
01:05:16It's a shock and surreal.
01:05:18And so recognizing what the
01:05:19needs are and what the different
01:05:21challenges are is vitally important.
01:05:23And this does a very good job of sort of.
01:05:26Breaking down the challenges that come in
01:05:29each stage when you have a chronic stage,
01:05:32it's it's a place of stability,
01:05:34but it's different and and that
01:05:36adaption takes a lot of work and
01:05:39there still works to process out what
01:05:41this looks like.
01:05:43How do we find significant
01:05:44meaning during that time?
01:05:46And then this is a process
01:05:48of constant adaption,
01:05:49so there's transitions.
01:05:50There's new treatments.
01:05:51There is also endings at times,
01:05:54and all these things need to
01:05:56be addressed and supporting.
01:05:58Supporting both the patient
01:06:00and the family together.
01:06:01So in the first crisis Phase I
01:06:04wanted to highlight a few of the
01:06:06challenges that come up and in the
01:06:08crisis stage phase you have the need
01:06:11to understand what was going on.
01:06:13What does it mean in terms of my life?
01:06:15What does it mean in terms of
01:06:18the treatment will be receiving?
01:06:19How does affect what I was doing previously?
01:06:22You know, if if you're sending off your kids,
01:06:25your kids off the truck college,
01:06:27how does it look to support them
01:06:29when they're trying to separate in?
01:06:31Differentiate themselves from the family
01:06:33family unit at one of the aspects.
01:06:36I really like.
01:06:37A lot is the third one creating
01:06:39meaning that promotes family
01:06:41mastering and competency,
01:06:42and this is really the narrative that
01:06:46patients and individuals come to in terms of.
01:06:49How I make sense of this and
01:06:52how I transcend beyond it?
01:06:54It is the narrative that incorporate
01:06:56family histories of my parents were
01:06:58extremely resilient and my dad never
01:07:01complained and he always got up for work.
01:07:03These are the things we can tap
01:07:05in the inherent straight strength
01:07:07of family systems and individuals
01:07:09that are that are there.
01:07:11And also there's a grief process
01:07:13that comes up and grieving for the
01:07:16family identity before this disorder.
01:07:18Often times I've heard.
01:07:19You know,
01:07:20spouses share how they're feeling angry at.
01:07:24Just watching watching another family,
01:07:26going to a diner because it's so normal.
01:07:30It's so routine,
01:07:31this is something that needs its place.
01:07:35It needs time to be fully felt and healed.
01:07:39And of course,
01:07:41establishing a relationship with your
01:07:43health care providers and developing
01:07:46that trust and collaborative process.
01:07:50The chronic phase.
01:07:51It's a.
01:07:51It's a little bit different.
01:07:53You know.
01:07:53It's you found a place of stability,
01:07:56but you know,
01:07:57I've heard patients really
01:07:58describe sort of living with
01:07:59anticipatory loss and uncertainty.
01:08:01I've had people say,
01:08:02you know I've returned to normal.
01:08:04It's it's completely.
01:08:05I'm baking and gardening and it feels great,
01:08:07but at times I feel really insecure
01:08:10and it's it's really hard when you
01:08:12have those two incongruent emotional
01:08:14states at one time and making sense
01:08:16of that and being open to each place.
01:08:19And validating is is is tremendous
01:08:21Lee difficult to do also within
01:08:24the family system?
01:08:25You know,
01:08:26developing open communication lines
01:08:28really sharing the burden amongst
01:08:30the whole family unit and supporting
01:08:33each other is a key process.
01:08:37And and extending on into grief
01:08:39is is sort of acceptance.
01:08:41You know, the grief process hasn't stages.
01:08:43It has all its difficult emotions
01:08:45that can come up and it.
01:08:47But one of the things it leads
01:08:49to is a degree of acceptance.
01:08:51A degree of acceptance of
01:08:53where the new normal is,
01:08:55where people are at,
01:08:56and you know where they can do
01:08:58what they can do from there and
01:09:00how they can empower themselves.
01:09:05So there is another stage of transitions.
01:09:08Anytime there's a change anytime the
01:09:10family system needs to find equilibrium
01:09:13needs to redefine hoping goals,
01:09:15and sometimes that includes an ending phased
01:09:18in which you know individuals and families
01:09:21have to identify an unfinished business.
01:09:23What's really important to accomplish and
01:09:26then really maximizing the quality of life,
01:09:29the meaning, the purpose, and you know,
01:09:32bringing that time together to its.
01:09:35To it, to maximize the goodness that
01:09:38can come from spending time together.
01:09:41So this is one of the frameworks that
01:09:43helps me sort of support patients and
01:09:46recognize what is important in a given time,
01:09:49and it's really excellent in terms of
01:09:51recognizing the whole picture of the patient.
01:09:53You know, their history,
01:09:55their family history,
01:09:56the multi generational stories
01:09:57that are shared among them that
01:09:59have helped them through this.
01:10:01And also it's a very positive one in
01:10:03terms of it's really encourage ING the
01:10:06family to meet these challenges and for
01:10:08something like a brain cancer diagnosis it.
01:10:11Ripples it did.
01:10:12The effect extends throughout
01:10:13the family system,
01:10:14and it's an extraordinarily
01:10:16hard challenge to meet alone.
01:10:18So the fact that you have people around you,
01:10:21the people that can support you.
01:10:24It's vital to tap into that reserve.
01:10:30And you know this is something that you
01:10:32know has been spoken about in terms of
01:10:34maximizing you know why we're fighting
01:10:36and why we're going through this is
01:10:38that we have to be as a medical team.
01:10:41Very mindful of those goals of
01:10:42what a good life looks like.
01:10:44You know, I've heard Doctor Blondin mentioned
01:10:46you know such and such is going to wedding.
01:10:49I'm going to hold off on the treatment
01:10:51for this week and they're going
01:10:52to have fun and and that's vital.
01:10:55I mean, This is why we go through all
01:10:58these hardships is to enjoy life.
01:11:00So you know pulling it back to sort of
01:11:03what we do and then in the crisis stage,
01:11:05this is often one of the things that
01:11:07we will help support patients with.
01:11:09This is the practical service.
01:11:10How am I going to pay my bills?
01:11:12But you know, can I return to work?
01:11:15What are the things that are going
01:11:16to be helpful in this time?
01:11:18And these are things that social
01:11:20work entail quick.
01:11:21There's a number of resources that I
01:11:22will share at the end and turn websites
01:11:24that you can find out more information
01:11:26about how to navigate this process.
01:11:28Because you know they didn't
01:11:29teach us this in school.
01:11:31This is kind of just thrust upon us,
01:11:33and so one of the things that we can try
01:11:36to help with is get you the resources
01:11:38of how to apply for disability,
01:11:40if that's if that's an option that
01:11:42when people want to pursue how to
01:11:44maintain your health insurance,
01:11:45maybe you know Medicaid is an option.
01:11:47How do we access the.
01:11:49Oh, sorry,
01:11:50the marketplace to find an insurance
01:11:52that fits.
01:11:53So all these sort of things that are
01:11:55basic to our well being and living our life.
01:11:58We will support people with.
01:12:00There was also grants that people can
01:12:02access to help out with basic needs.
01:12:04Paying for utilities, maybe a rent,
01:12:06maybe a mortgage payment.
01:12:08All these sort of things you know,
01:12:10laying the foundation to getting
01:12:13through this process.
01:12:14The emotional challenges and,
01:12:16you know, one of the things that
01:12:17were shared with me so succinctly is,
01:12:20you know, a patient said to me.
01:12:23It's the brain.
01:12:24It's kind of who we are and this was
01:12:27into in regards to the terror that
01:12:29they felt in terms of the changes.
01:12:32The fear of loss.
01:12:33I have had a individual share with me,
01:12:36recognizing that she had lost
01:12:38the ability to sign her name,
01:12:40her signature,
01:12:40and that's so fundamentally us.
01:12:42And so this is a very unique challenge
01:12:44to brain brain tumors and brain cancers
01:12:47that it's really how we define ourselves.
01:12:50It's it's our function.
01:12:51It's our balance,
01:12:52it's our eyesight.
01:12:53It's driving it.
01:12:54Independence,
01:12:54and this is a profound in terms of how it
01:12:58affects our life and how it shapes our lives.
01:13:00So often times when I'm sitting with people,
01:13:03there's two different processes
01:13:04that I sort of flesh out
01:13:06with them, and one is a degree of
01:13:08trauma that it's going to trigger.
01:13:10Our anxiety are survival mechanisms,
01:13:11I tell family members.
01:13:12And when I first meet them,
01:13:14are you a little more irritable with
01:13:16each other and they're like yes,
01:13:18and it's that's normal because it's part
01:13:20of our flight fight or flight mechanism.
01:13:22And then knowing that and being.
01:13:24Cognizant of that you know helps
01:13:26us sort of be a little bit more
01:13:28gentle to ourselves that you know
01:13:30that we recognize we're a little bit
01:13:32under stress and this is natural.
01:13:34Alot of my job is normalizing
01:13:36these emotions that it feels so
01:13:38intense in the very beginning and
01:13:40then giving tools like meditation,
01:13:41prayer in itself is a way of staying present,
01:13:44you know,
01:13:45and having people access the
01:13:46things that make them feel better.
01:13:48The other emotional process that
01:13:49I tend to see is a grief one and
01:13:52that comes with any limitations.
01:13:54Anytime we have obstacle or wall.
01:13:56We triggered the grief process and that
01:13:58grief process can roll into all past losses,
01:14:00and so this is when I oftentimes
01:14:02they really identify and really
01:14:04stress because it's not linear.
01:14:05It's not even logical at times,
01:14:07but it's just the power of those emotions
01:14:09in the expression that need to be had.
01:14:12And healing grief is just very simple.
01:14:14It's feeling the emotions and then
01:14:16reconnecting life and the good
01:14:18ways that really pull you through.
01:14:20So I also want to address the
01:14:23caregivers because.
01:14:24Their job is is vital and these
01:14:27are things that I always share.
01:14:29You're doing a superb,
01:14:30wonderful job caring for the people you love,
01:14:33and oftentimes it doesn't feel that way.
01:14:35And the problem is, the game is rigged.
01:14:37You're you're balancing two moral
01:14:38virtues together of caring for yourself,
01:14:40caring for the person you love,
01:14:42and there's never enough hours in the day.
01:14:44So I just want to tell you,
01:14:46doing a superb job and a wonderful job,
01:14:48the other part of that is that
01:14:50guilt is a school for self care.
01:14:52So if you're feeling guilty that
01:14:54you can't do something and you're
01:14:56just a little bit tired.
01:14:58It's really your body saying
01:14:59I want to and I'm willing,
01:15:01but I I need to take care of this so it's
01:15:05OK to care for yourself to slow down.
01:15:08Take a time,
01:15:09take a time to walk and maybe go
01:15:11to a movie or talk to a friend
01:15:13because you're self care is modeling
01:15:16within your family system of how
01:15:18to prioritize your well being.
01:15:20How to nurture yourself and if
01:15:22that energy get gets rippled out
01:15:24to all the people in your family.
01:15:28So just in terms of ending the.
01:15:33The talk I really wanted to address,
01:15:35sort of the unsung gifts of cancer,
01:15:37and this is science.
01:15:38Certain things that have been shared
01:15:40with me that have really made an
01:15:42impact in terms of the wisdom that
01:15:44can come from a cancer diagnosis.
01:15:46The fact that individuals will share,
01:15:48like you know, I,
01:15:49I quit my job and it was the best
01:15:51thing I ever done did in my life and
01:15:54I really prospered in in terms of
01:15:56the things I loved and that sort of
01:15:58being true to their authentic self and
01:16:00listening to what's most important to them.
01:16:03There's a real clarity
01:16:04that comes from a really.
01:16:06Major diagnosis like this and also the fact
01:16:10that our attitude is profoundly important.
01:16:14So we're not diminishing the emotional
01:16:17impact in the difficulties that arise, but.
01:16:21We have the capacity sort of transcending
01:16:23those difficulties and those obstacles,
01:16:25and that's one of the things that you
01:16:28know social work wants to help with.
01:16:30Counseling can help with our spiritual
01:16:33practice can help with and to really
01:16:35tap into that as a resource and a
01:16:38tool to getting through difficulty.
01:16:40So I'm going to run through a number
01:16:43of resources we have at smilow.
01:16:44Most importantly,
01:16:45we have the brain tumor Support Group,
01:16:47which is up and running through Stephanie.
01:16:49I saw that mentioned in the chat
01:16:51and I I really,
01:16:53highly recommend support groups.
01:16:54It's a great way to breakdown feelings
01:16:56of isolation to give mutual aid to help
01:16:58people to get other people's perspective.
01:17:00It's a beautiful thing.
01:17:01There's great sense of humor,
01:17:03it's it's a wonderful thing.
01:17:04There's also a caregiver support
01:17:06group that's in the evening,
01:17:07so it's a little bit easier for caregivers.
01:17:10To try to attend and these are all
01:17:13by Zoom who's who's run by Mary.
01:17:16There's also a meaning centered
01:17:18psychotherapy group and that was
01:17:19developer cancer patient and some very
01:17:22structured Psycho Ed intervention.
01:17:23And that's really to address sort
01:17:25of that feeling of how do I find
01:17:28my purpose through this?
01:17:30What is my my new life look like?
01:17:33And it's done through seven week
01:17:35individual sessions and eight week groups.
01:17:37That palliative care has it.
01:17:39There's a number of social workers that are.
01:17:42Trained in it,
01:17:43and so you can just ask your team
01:17:45and they can do a referral.
01:17:47We have nutrition as Doctor
01:17:49Blunden mentioned.
01:17:50We have integrated medicine who
01:17:53have wonderful guided meditations.
01:17:55The Covid we did have massage
01:17:57therapy at times,
01:17:58and different classes that you can
01:18:00attend in person like Gentle Yoga.
01:18:03They're doing a little more remote.
01:18:05There is also art therapy.
01:18:07We also have a referral to pack,
01:18:09which is parenting at a challenging time.
01:18:12You know,
01:18:13for individuals with children of any
01:18:15age we have a module that helps people
01:18:18figure out communication tenants
01:18:19how to maintain open communication,
01:18:21what emotions to sort of look for and
01:18:24describe and reach for in their children.
01:18:27And just sort of just ways of creating
01:18:29a a normal structure to support
01:18:32people through a difficult time.
01:18:34Also palliative care is
01:18:35another wonderful referral.
01:18:36They have a holistic practice
01:18:38and they have a very large team
01:18:42that people can have access to.
01:18:44Community resources,
01:18:45so the connected Brain Tumor Alliance
01:18:49education advocacy they have they
01:18:51they have support groups as well.
01:18:53There's An's place who have
01:18:55individual and group counseling.
01:18:57Cancer Care has online kids hugs is for kids,
01:19:02parents and their children.
01:19:03The American Cancer Society has a
01:19:06number of information transportation
01:19:08they did have before covid.
01:19:10And then there's a number of
01:19:13other ones cancer in careers,
01:19:16triage, cancers.
01:19:16Which helps with employment and
01:19:19legal support and then of course,
01:19:21financial grants to help people
01:19:23meet needs during their treatment.
01:19:24There's a cancer Connecticut
01:19:26Cancer Foundation,
01:19:27Lovemark Foundation and cancer care and
01:19:29then this is just the one last slide.
01:19:32It is long term care options
01:19:34through the state of Connecticut.
01:19:36Sometimes when individuals
01:19:37need extra support at home.
01:19:39These are the programs that are available.
01:19:41The one thing I wanted to point out was
01:19:44that if if people under under age 64
01:19:47there is not a lot of great resources,
01:19:50the wait list for that is four to five years.
01:19:53So if anyone is interested in
01:19:54talking about in finding more
01:19:56information they can contact me.
01:19:57And also I would also recommend if
01:19:59we could call your representative and
01:20:00advocate that that's kind of unacceptable.
01:20:03If that if people need help
01:20:04that we should have that.
01:20:06So I want to thank you and I had to
01:20:08give a special thank you to my wife
01:20:11who kept the house is quiet as I've
01:20:13ever heard it with our three little boys.
01:20:16So it was a little leery for a little bit,
01:20:18but thank you for the time.
01:20:24Thank you so much, Brian.
01:20:25I know I have my almost 6 year old son who
01:20:29I know is gonna race in here any minute
01:20:32so I can feel the stress and understand.
01:20:35But that was a really beautiful talk and Ann.
01:20:38Thank you so much for summarizing
01:20:40all of those those resources.
01:20:41That's incredibly helpful,
01:20:42so really appreciate that.
01:20:44And yeah, Jillian had mentioned in the
01:20:46chat and of course you mentioned the brain
01:20:49Tumor Support Group is really useful.
01:20:51Really helpful.
01:20:52And now you know is occurring through zoom.
01:20:55So we can have all of our patients and
01:20:58and really very remotely participate,
01:21:00and that's open to everyone in anyone.
01:21:03So I think what we can now do in
01:21:06the interest of time and children
01:21:09who are going to lose it.
01:21:11An adults.
01:21:12Perhaps we can switch to some questions
01:21:15so we have some in the chat box.
01:21:21I'm never very good at.
01:21:23And so I'll start at the beginning.
01:21:26Yes, it is possible to get the
01:21:29recording of this session and Renee had
01:21:31already provided the link for that.
01:21:34It will be posted in the next few days.
01:21:38I believe she said. Uhm?
01:21:43Yep, so she has that.
01:21:44We have a question of a friend
01:21:46recently diagnosed with a glioblastoma.
01:21:48She's 67.
01:21:49She was otherwise in good health
01:21:51before suffering a grand Mal seizure.
01:21:53She had a total resection last week and is
01:21:55now starting chemo and radiation therapy.
01:21:58She qualifies, do too as I understand it,
01:22:00a type of virus she has been exposed
01:22:02to in the past for a clinical
01:22:05trial being conducted at Duke where
01:22:07she is currently being treated.
01:22:09Can you discuss the options for
01:22:11clinical trials that might be available?
01:22:13Please discuss in lay terms.
01:22:14Nick, do you know you've already,
01:22:16I think elaborated some, but.
01:22:19Yeah thanks. I mean, generally
01:22:22speaking in terms of clinical trials.
01:22:25There are individual factors for each
01:22:27trial regarding a person's eligibility,
01:22:29so it may be the type of
01:22:32tumor that they have.
01:22:34Even within glioblastoma Fedsmith later on,
01:22:36not related, and then there's
01:22:38certain time points at which
01:22:40folks can enter clinical trials.
01:22:42So one time point is generally
01:22:44after surgery before radiation,
01:22:45and then a second time point is at times when
01:22:48recurrence or relapse happens in the future.
01:22:52A few ways to find out about
01:22:54clinical trials are number one.
01:22:56Ask your doctor.
01:22:57They'll be aware of the clinical
01:22:59trials open at their institution.
01:23:01For example here at Yale.
01:23:04I'm aware of all the trials that we have
01:23:07open and the investigators for the site
01:23:10will be the different docs in the practice.
01:23:13So at Yale is myself Doctor Romero,
01:23:16Doctor Barrington.
01:23:16Dr.
01:23:17Corbin then looking more broadly,
01:23:19your doctor probably will have a sense
01:23:21of other clinical trials open and a
01:23:24way to kind of search for yourself.
01:23:26Or do you own research is to go to
01:23:30websiteclinicaltrials.gov and within
01:23:31that there's a on the landing page.
01:23:34There is a field that you can enter.
01:23:37Search being for glioblastoma
01:23:38and then filter by the state that
01:23:41you live in your age.
01:23:42What type of trial you would be
01:23:45interested in and look that way
01:23:47an another way that you could
01:23:49search for clinical trials.
01:23:51Just do the national Brain Tumor
01:23:53Society website whichisbraintumor.org.
01:23:54They have a clinical trial search
01:23:56feature which may be a little bit
01:23:58easier for less tech savvy folks
01:24:00to use in clinicaltrials.gov.
01:24:04So I know it Chris mentioned the goal
01:24:06of the Connecticut brain tumor alliances
01:24:07to make Connecticut a center of
01:24:09excellence for different clinical trials.
01:24:11And I I. Do know that Yale has the
01:24:14most number of clinical trials open,
01:24:17but then Hartford Hospital and you can't
01:24:19help also have different clinical trials.
01:24:22So there are a variety of clinical
01:24:24trials open for patients and they
01:24:26come and go as they fill up their
01:24:29recruitment goal for patients.
01:24:30And we're always looking to expand the
01:24:33number of trials that we offer here and
01:24:36bring that to fruition for the state.
01:24:42Great, and along those lines you can
01:24:44always reach out to us for second opinions
01:24:46with regards to clinical trials and care.
01:24:51Alright, are there any additional
01:24:53trials for Optune device in GBM Nick?
01:24:56So there is a device trial
01:24:59for newly diagnosed patients.
01:25:00It's open at Hartford Hospital and
01:25:03smaller hospitals around the US and in
01:25:06this study there comparing two groups,
01:25:08the first group being patients who will
01:25:11receive Optune device after radiation
01:25:13is finished in the standard fashion.
01:25:15That's the kind of the control group
01:25:18and the experimental group starts Optune
01:25:20device when they start radiation therapy,
01:25:23with the theory being that
01:25:25starting up soon earlier.
01:25:27It's just longer time of exposure to
01:25:29the fields which could be beneficial,
01:25:31and there may be some interaction between
01:25:34electrical fields and radiation that that
01:25:36could be more beneficial killing tumor
01:25:38cells so that study is currently open
01:25:40for enrollment in Hartford I believe,
01:25:42and I and other places,
01:25:43and I'm I'm looking forward
01:25:45to seeing the results.
01:25:46The results of that study,
01:25:48probably in a couple of years
01:25:50off into the future.
01:25:53Next question from email.
01:25:55We have some concerns regarding
01:25:57the covid vaccines for brain tumor
01:25:59patients in active treatment,
01:26:01particularly on the clinical
01:26:03trial with Tim is Olumide.
01:26:06How will we know if the code
01:26:08vaccine is effectively brain?
01:26:09Can't is affecting brain
01:26:11cancer patients negatively?
01:26:12Or if it is ineffective
01:26:13for brain tumor patients,
01:26:15is just being studied currently?
01:26:16Or is the data specific to this
01:26:19demographic not being collected at all?
01:26:22Are there any symptoms that
01:26:23cancer patients and treatment
01:26:24should watch out for with the
01:26:26first or second vaccine shot?
01:26:30I'd be happy to weigh in on that huge.
01:26:32I've had a number of patients of mine
01:26:34asked me about the Covid vaccine and.
01:26:39Generally speaking,
01:26:40and pretty much essentially in
01:26:41every persons case I recommend,
01:26:43they would proceed with the covid vaccine.
01:26:45To protect themselves against
01:26:47Covid covid's very serious illness,
01:26:49I've lossed patients of mine and friends
01:26:51of mine to covid as I'm, I'm sure,
01:26:54pretty probably everyone on the call
01:26:56has over half a million Americans
01:26:58have died from covid and the vaccines
01:27:00have been proven safe and effective
01:27:03to reduce severe covid essentially
01:27:04eliminate the chance of severe covid,
01:27:07so there appears to be no.
01:27:10Real changing of a person's body or
01:27:13biology that would impact GBM in any way,
01:27:17either positive or negative,
01:27:18with the covid vaccine.
01:27:20Some folks do get a reaction as
01:27:23they are like immune system becomes
01:27:26immunized by the vaccine is my.
01:27:29Reports I'm hearing or generally it's
01:27:32after the shot within 24 to 48 hours
01:27:34lasting for a short period of time.
01:27:36Generally that's the 24 hours
01:27:38of just feeling something like
01:27:39fatigue or minor fever,
01:27:41and these can be treated with
01:27:43over the counter medications
01:27:44like Tylenol or Mot ring.
01:27:45And then you know that's it,
01:27:47then you you've been vaccinated
01:27:49and and you will no longer be at
01:27:51risk of getting secret Cove.
01:27:53It's so I can recommend everyone I meet.
01:27:56Please proceed with getting your covid
01:27:58vaccine and that's how will crush Covid.
01:28:01That's a whole other weapon alright.
01:28:04And there's guidelines now
01:28:06from the CDC in terms of
01:28:08correct. Also, I will point out there
01:28:10was a hold placed on the single shot
01:28:13Johnson and Johnson vaccine after
01:28:15there were a small number of cases,
01:28:18a few cases reported of a possible
01:28:20Association with blood clotting,
01:28:22something called cerebral
01:28:23venous sign from Sinus Trumbo,
01:28:24SIS and so out of several million
01:28:27doses of the vaccine given just a.
01:28:30Few folks had developed the thrombosis,
01:28:33so it's still somewhat unclear
01:28:35if there is a even an actual
01:28:38relation of of that or not.
01:28:40But with a person with any increased
01:28:43risk factors of getting deep
01:28:45vein thrombosis or blood clots,
01:28:47the other two vaccines available in the US.
01:28:50The Pfizer and Moderna brand vaccines
01:28:53both don't have any known Association
01:28:55with blood clots and could be something
01:28:58that's definitely reasonable for a person to.
01:29:01Receive alright
01:29:04a few more here. Can you elaborate Nick?
01:29:09Just real quick, maybe Methley did versus
01:29:12unmethylated. Sure,
01:29:13so we now know there are two
01:29:16main subtypes of glioblastoma
01:29:18methyl lated and unmethylated,
01:29:20and that refers to the status of
01:29:23the gene for the MGMT enzyme and.
01:29:27When the gene is metallated within the DNA,
01:29:30the gene is turned off and those patients
01:29:33don't have the gene active and so
01:29:36they don't have much of the MGMT enzyme.
01:29:39An unmethylated to gene is active.
01:29:42It's turned on.
01:29:43Unmethylated has high levels of the enzyme,
01:29:45and tennis olamide is less effective,
01:29:48so it ends all of my damages
01:29:50DNA as its mechanism of action.
01:29:52MGMT enzyme reverses the damage,
01:29:54so 10 is old.
01:29:55Might still has some effectiveness
01:29:57and unmethylated patients,
01:29:59but it's it's less than methyl
01:30:01lated and so we believe that just
01:30:04metallated patients in general or more.
01:30:07Susceptible to the benefits of
01:30:08radiation and chemo therapies,
01:30:10and that may be why the prognosis is better.
01:30:13And then there may be other
01:30:16biological factors that just make.
01:30:18Methylate is subtype patients
01:30:19better responders to therapy,
01:30:21and they may do better,
01:30:23and these are still kind of being worked out.
01:30:29Great in the interest of time.
01:30:32Will take a few more,
01:30:34one here asking to provide insight
01:30:36of my experience of affectedness
01:30:39of five Ala in extent perception,
01:30:42overall survival of tumors as
01:30:44compared to intra operative MRI.
01:30:46In my personal experience I really use
01:30:49an rely on the Inter operative MRI.
01:30:52That's just my strategy and
01:30:55seems to work the best for me.
01:30:58Man we do review.
01:30:59We we do first of all manage a
01:31:02very large database that has all of
01:31:05our patients and outcomes that we
01:31:08follow which we continually analyze,
01:31:11and it does support the use
01:31:13of of our current strategies.
01:31:15So we have been satisfied with that.
01:31:20Next one, enjoy the presentations.
01:31:22I've recently joined the staff
01:31:24at Rutgers in New Brunswick after
01:31:2616 years in Kansas City.
01:31:27Looking forward to connecting
01:31:29professionally with us.
01:31:30Sorry, that was just to the panelists.
01:31:32We look forward to connecting with
01:31:35you as well. That was the last one.
01:31:40And someone just to thank you,
01:31:41so you're welcome.
01:31:44I just want to again thank Chris
01:31:46Cassano from Connecticut Brain
01:31:48Tumor Alliance Renee Gaudet,
01:31:50who thankfully organized all
01:31:51of this and put this together.
01:31:54She always does such an outstanding job,
01:31:56and then my Co.
01:31:58Panelist, Nick Blonde and Bruce Mcgibbon,
01:32:00and Brian Gin for really
01:32:02their outstanding talks.
01:32:04All in honor of Doctor Susie Baras,
01:32:06who is an amazing person,
01:32:08continuing to be treated for for
01:32:11glioblastoma and and really giving
01:32:13back and making sure that patients can
01:32:16receive the same level of care that.
01:32:19She has so we look forward to more
01:32:21of these seminars in the future.
01:32:23And if there's any more comments
01:32:26from my panelists.
01:32:27I'll turn it over to you guys
01:32:29before we say goodnight.
01:32:33Just that want to echo what you said?
01:32:35Thank you for the help in organizing
01:32:37and thanks everyone for joining and
01:32:39pleasure to be here this evening.
01:32:42Come to our tumor support groups.
01:32:44Email us if you have any
01:32:46questions or want any additional
01:32:48opinions or conversations.
01:32:50Brain tumor surgery at yale.edu.
01:32:52Happy to connect you. Alright.
01:32:55Thank you, have a good night.
01:32:59Did everyone thanks?