From WXXI news this is Connections.

I'm Evan Dawson.

Our connection this hour was made on Christmas Day 2024.

Shannon Godlove, had felt rundown for months, but Christmas Day felt different.

She had a severe headache that day.

Bad enough for her husband to take her to the hospital that she had wondered about a range of possibilities.

Migraine at the top of the list, but not the one doctors eventually diagnosed acute myeloid leukemia.

Roughly 1.5 million Americans are currently living with, or are in remission from a form of blood cancer.

Local clinicians say new research and treatments for blood cancers are helping people live longer, better lives.

They say progress is made.

Rach in Rochester has helped people survive for years after their diagnosis.

And this hour, we're going to talk with the experts about the current state of the research.

We'll talk about what survivors can expect, and they're going to share their experiences.

And our panel will also address how doctors and patients can work best together to make decisions, and how to treat and what to do for their own health.

And I mentioned Shannon Godlove, she's here, a blood cancer patient.

It's nice to see you.

Thank you for being with us.

Hi.

Thank you for having me.

Next to Shannon is Doctor Carla Casulo, who is a professor of medicine, hematology and oncology, and the Robert B Gergen Distinguished Professor in Cancer Care at the University of Rochester Medical Center.

Doctor, welcome.

Thank you for being.

Thank you for having her across the table.

Let me welcome Ralph.

Only who's a, a patient, a grateful patient.

He says at the Wilmot Cancer Institute, a member of the advisory board of the Wilmot Cancer Institute, a member of the Home Health Care Board at U r medicine, chair of the Wilmot Cancer Institute.

Discovery ball, coordinator of the Wilmot Warrior weekend.

Did I miss anything?

No.

That's.

It is great to say thank you.

Thank you very much for having me.

And Doctor Melissa Loh is here, an associate professor in the Division of Hematology and Oncology and director of geriatric hematology research at the University of Rochester Medical Center.

Doctor Loh, welcome to you.

Thank you for being here.

Thank you for having me.

Shannon, I mentioned your story off the top here.

You did.

And so it's coming up on two years since your diagnosis, or at least the day that you went to the hospital.

Yes, for about a year and a half.

Oh, yeah.

How are you doing?

I'm doing well.

I'm back to work.

I'm back to most of my activities.

I am pushing myself.

When I got my diagnosis, I was the woman who did it all.

I worked two jobs.

I have three children who are in every sport and club you can think of.

I have three dogs.

I as a hobby, I train, I hike with them, I exercise, and I had mentioned to some friends that I was feeling tired.

And they were like, well, who wouldn't be tired?

Yeah.

Yeah, right.

But I knew in my heart it was not a normal tired.

I began resting more and more, skipping out on my hikes.

Sleeping on my lunch break at work.

And and it didn't feel like the fatigue of being a parent.

Someone who's got a long day of work and parenthood and run into games and preparing meals.

It was more than that.

It was.

And I will say, nobody knows your body more than you do.

And if something feels like it's not right, it probably isn't.

And so I did keep brushing it off because like I said, everyone said who wouldn't be tired from doing all that?

And I was like, well, I, I'm, you know, I'm in my 40s.

You know, maybe it is all starting to catch up with me, but that that's not what it was.

That Christmas Day, how bad was the headache?

What do you remember?

It was debilitating.

I, I suffered through the day for my children.

And that just goes to show you will do anything for your kids because it was debilitating.

I, I knew in my heart that that was not a normal headache.

And so I, I suffered through the presents.

I suffered through the Christmas dinner, having my dad over.

And then in the evening time, I went to lay down with my daughter and watch a Christmas movie.

And I just could not get through the movie.

I could not focus.

I could not take my mind off of this headache.

How old are your kids, by the way?

The oldest.

My son is 17, Maddox.

My oldest daughter, Harper, is 14.

And my youngest daughter, Evie, is eight.

Until, you know, you don't want to scare them.

You know, you don't want to disrupt a day, right?

But eventually you go to the hospital and you're thinking, probably migraine, something like that.

I was hoping they could treat the migraine, and get it under control and send me back home that way.

Are you?

And migraines suffer.

I've had migraines, on and off throughout my life.

Yes.

Yeah.

Okay.

And so, how long did it take?

I mean, what was that process like?

So, we got to the emergency room, obviously, migraine is at the back of the list of of them rushing people into the emergency room.

And so when I got in there, they were able to treat the headache pretty quick, quickly, with what they call the cocktail.

It's a combination of medications.

I think it involves a lot of Benadryl.

And, they asked me to stay overnight, which I thought was kind of strange, but I was agreeable because I did not want this headache to come back.

And so I stayed overnight in the morning, a doctor came in to speak with me, and he said that they had found something funny in my blood.

Not funny.

Ha ha.

And they had sent a sample of my blood off to Rochester.

I was in Batavia at the time.

I live in Corfu.

And that is something that they don't normally treat in Batavia.

So they have sent a sample off, to Rochester.

To Rochester general, when they discovered what it was, the amount, and they rushed me by ambulance to Rochester General and began treatment immediately.

Acute myeloid leukemia.

That's right.

Had you heard of it before?

I mean, did you know anything about it?

So funny thing is, I had heard of it before.

My aunt suffered from this very thing.

Not, blood relative, but she's married to my uncle.

Still very special.

But when I was about 12 years old, 30 years prior to me getting this, my aunt had gone through the same thing.

And I remember the resources were very hard to reach at the time.

And I remember everyone just going bonkers trying to to help her.

So what goes through your mind when they tell you acute myeloid leukemia?

I, I was just like, mean.

There's no way.

I'm I'm the healthiest, most active person I know.

There's.

It was truly unbelievable.

Not to be cliche, but you're in that category of people going.

But wait a second.

Yeah.

I mean, I'm, I'm very active.

I'm on the go all day.

I take care of myself.

I take care of my kids.

I eat healthy.

You're 40 size.

Yup.

And.

And yet the diagnosis was diagnosed.

So what did they tell you at the time?

I mean, you went right into treatment.

I don't even think I understood the severity of what was happening until much later.

I mean, like, weeks later, a I don't know if I subconsciously checked out or if I didn't have a full grasp of what was happening.

But I will say it was weeks later before I was like, Holy cow, like, this is really happening.

Did you feel at the time either angry or confused?

I mean, what's what's the emotional range when you get a diagnosis that feels like it all of a sudden?

Yeah.

You're not going to your kid's game next week.

You're not going back to work for a while.

You know, how do you process that?

So I'm a very good natured person, a very positive person.

People cannot stand me because, I don't know.

I find it very pleasant.

We just met.

Thank you.

I am very happy go lucky all the time.

I was able to maintain that, state of mind throughout my entire treatment.

Amazing.

I, I do, I did worry about my children.

Was I am I ruining their life?

Like, they're not going to get to do certain things now because of me.

Luckily, we had, family that was willing to step in.

My mother in law, my and my father were taking turns staying at the house, helping the kids maintain as normal as possible of their lifestyle.

By now, you know, you didn't ruin their lives.

In fact, you gave them better perspective on the fullness of life.

I totally agree.

They are three, children who never should have had to go through what they went through, but they are better people because of it.

They are caring.

They are, empathetic.

They are my best caretakers.

They are always checking on me.

They love their mom.

It's awesome.

Yeah.

And your story?

There are echoes of, breast cancer treatment.

We talked to Assembly member Sarah Clark, who was recently diagnosed with breast cancer.

She got done with legislative session.

May into June.

Thought she was going in for a typical mammogram and within days is starting chemo.

And I hear that.

Yeah.

And everything changes to, we've talked a lot about breast cancer on this program, less about blood cancer.

But the the rapid ness of the go right into treatment is is interesting.

How long was your treatment?

So I was put on the high tack therapy.

It's three types of chemotherapy, that they give to you, through different denominations throughout.

But I was in the hospital the first time for 42 days.

And so now.

Well, how are you doing?

How am I doing now?

After a while, I will say I have a, genetic mutation called fleet three that makes the, leukemia prone to coming back.

So at a very early stage, they knew that I was going to have to have a bone marrow transplant if I was going to pull through.

So even though I became into remission after those 42 days, I had to remain under treatment until we could find a donor, for me to have the bone marrow transplant.

So I would go home for two weeks, I would go back to the hospital for five days, and and this went on and on until we could find a donor.

My original donor.

We were all set to go.

I I'm not sure what happened to him.

We can't know anything about each other because of HIPAA.

But he had to back out last minute, which was terrifying.

But luckily, I was.

I was lucky enough to have another match, and she jumped right on board.

She's a young woman from Germany.

That's all I know about her at this time.

And, we spent a month going through testing to make sure both of us were healthy enough to go through with the transplant.

I they checked the heart, the kidneys, the lungs, all all of this testing.

And so when both of us were ready to go, July 11th, I had my bone marrow transplant.

And, I have since spent my time recovering from that.

But, I should be in the clear, and I've been feeling really good about it.

How often do you think about it?

Oh, wow.

100 million times a day.

You just, Yeah.

Yeah.

Okay.

But you're feeling at this point, like you can plan for your future.

Yes.

That's great.

I will.

Let me ask the doctors about this story or so.

Doctor.

Casulo.

Doctor.

Doctor Loh, tell me as you hear her describe the story.

What you want the audience to understand about this is one person.

And every person story is a little different.

But what are the broader implications you want people to understand here?

I'll start with you, doctor.

Yeah.

First of all, I just want to applaud you for your story.

Thanks for sharing.

It sounds like it was a very harrowing experience, but I'm really happy that you're doing well.

So I really want to thank you for that.

I think that her story, sadly, is not too dissimilar from the stories that Doctor Loh and I share when it comes to blood cancers.

And, you know, you made a good point regarding the what we call the epidemiology of cancer, which meaning really refers to the statistical incidence, how how frequently some cancers occur in the country and breast cancer or lung cancer and things like that are more common.

However, leukemias, which is what Doctor Loh treats on lymphomas, which are the which is the disease that I treat, they're much less common.

They're rare diseases.

And so for that reason maybe are not at the forefront of what some people may really think about when they're thinking about cancer, especially in young adults where the likelihood of cancer is lower.

But if a young adult has cancer, it's often a blood cancer.

So I think that that's a really important aspect of this story.

I mean, 40 something I'm 40 something.

I recently was at the age where I was talking to my my dad, and I'm like, you know, I'm at the age where if I get diagnosed as somebody with something, it will be a surprise, but not like it would have been in my 20s or 30.

You know, you start to accept that things are evolving at the same time you were, what, 43, 44?

How old were you?

I'm 43.

And you're 43 now?

Yes.

And so I will say now, if something happens to me, after after treatment, if, if I'm to come down with something, we don't really know where it's coming from.

Is it because I was sick?

Is it because of the treatment I went through?

Is it because of my age?

No one will really know.

But I mean, 41 years old.

I still want to say that's too young for this.

And yet, how often do you see patients in this sort of age category with this kind of a diagnosis?

So within the treatment, within the diseases that I treat, which are lymphomas, I do have a kind of a niche area within young adults.

So I do see many, many patients that are in their 20s, in their 30s, in their 40s, with the forms of, lymphoma that I treat, in particular Hodgkin lymphoma, which is a common, type of cancer in young adults.

So, let me ask Doctor Loh, as someone who treats leukemia, first of all, as you hear this story, what do you want the audience to understand?

So, again, thanks for sharing your story.

I think the story, unfortunately, a lot of people say the same thing, and I've heard that they say one day they're well, and then the next day their life is being, drop from them.

And then in the next three months, this is what they have to do.

They have no choice.

It's really, I have to do this or I die.

I have no choice whatsoever.

So it is a hard experience.

And one of the things that I'm really passionate about improving is how do we change this experience.

But it's hard because you don't really have a lot of time to to figure out what you're dealing with, what cancer it is.

And then in that time when you're already stressed, you have to figure out what treatment options and it's not straightforward because part of I think the, the, the, the beauty that we're in right now is we have come a long way in terms of the treatments that we have available.

So, for example, for acute myeloid leukemia for 30, 40 years, we have maybe 2 or 3 chemotherapy that we use for everybody, whether or not you're fit, you're you're not fit, you're young or old.

That's what we use.

You either get it or you don't get it.

But in the last ten years, I think we're really in a good time where things have really changed and we have more options.

And in fact, the options are more targeted in a way where we have a better understanding of what the cancer looks like.

That also gives us more time to figure out what's important to you or patient as an as an individual and getting all the information.

It's important for us as doctors to help you make a decision.

Taking two people or two individuals, 78 year old, same kind of leukemia.

But if they care about different things, we might recommend a different option.

So I think now we're in a good place where we really need to take the time to understand the leukemia, first of all, and then understand what you as an individual care about, and really offering that information to your doctors, because that really can influence what we recommend as a doctor to you.

That makes sense to you, because everybody's different and what they care about is very different, not just a one size fits all necessarily.

Exactly, yeah.

And you heard Shannon say thinking it's impossible for probably survivors are very difficult for survivors not to think about if it comes back.

And, you know, that's a very human thing.

But if it comes back, she's already thinking like, well, why?

Well, what about the first time?

Do we know why someone like Shannon ended up with leukemia?

So what I usually say is 95% of the time we don't.

And cancer is unfortunately, more common as we get older, with a few exceptions, all cancer or more common as you get older.

And cancer is basically a mistake that was made and and in the past, we don't know when usually decades ago.

And that mistake was incorrect that by your body and that mistake basically keep carry forward.

And now decades later cancer happens.

So it's hard to track back.

When this mistake happened, it was supposed to be corrected.

So for for the most part, unless there's clear kind of history that other family members may have cancer, we don't really know why cancer happen in an individual.

Now.

We know certain things.

Like if you have received previous chemotherapy for another cancer, then yeah, you're more likely to get, cancer.

Leukemia is one of the example.

But for the most part, we really don't know why cancer happens for a specific individual.

How much is, genetics and the hereditary reason involved with leukemia here?

And same for lymphoma.

I'm curious.

So for leukemia, the the contribution of genetic mutations is really not not big.

So when China was talking about the mutations and I want to clarify, the mutations happen within the leukemia itself, which is very common.

And that mutation actually does not exist in other parts of your body.

So it's not inherited within the family.

It's a mistake.

That's what we call mutation that happened in the past.

And that mutation then led to the cancer being developed.

It actually doesn't exist in other parts of your body.

And so it doesn't get inherited and pass on to other family members.

Okay.

And lymphoma very much the same.

We don't believe that there's a strong genetic component to lymphoma, and lymphomas and leukemias are, similar in the sense that they're both cancers of the white blood cell.

They're different white blood cells.

But white blood cells typically respond to injury.

They help your body fight infection.

And so when there is a disease within the white blood cell, we often think perhaps that mistake took place when the body was reacting to a virus, or if the the body was reacting to an injury or an exposure.

And there's a lot of research that's going on right now to understand the underlying causality towards why these, these things happen.

Before we get to Ralph story here, I want to know, Shannon, how, how your family talks about this.

Now, what are your kids ask you about what you have gone through?

We joke that my children could probably perform a bone marrow transplant at this point.

They know everything about it.

My husband and I decided very early on that we were not going to lie to them about anything.

We let them ask their questions.

I mean, my tiny one, she's eight.

At the time, she was six.

I don't know if she had a full understanding of what was going on, but it was pretty close.

As much as a, a kid brain can, so they have been wonderful.

They've taken it easy on me.

They've tried to make my life easier.

I guess my biggest fear was not being there for them.

And kids are resilient.

They really made the most of filling in the blanks where mom wasn't right and, almost made their life as normal as possible.

We underestimate kids.

Sometimes.

We do.

Yeah, I'm guilty of it, too.

Having a 14 year old.

You want the world to be the stable, safe, wonderful place for them.

Sometimes you bubble wrap things too much.

Yes, but they can handle some incredible stuff.

I will say, one thing I needed for myself was I went to my children and I asked them if something were to happen to me.

Did I give them enough?

Did did they have any questions?

Was there anything that I didn't teach them that something they needed for me that I didn't give them?

And they all looked at me and said that if something happened to me, they were going to be okay.

And as hurtful as that sounds, it actually gave me peace of mind that if something were to happen to me, they were going to go on to be fully functional.

People in society.

Oh my gosh, Hannah.

Yeah, but but you're doing great right now.

Yes.

That's great.

Yeah.

What a story here.

Well, Ralph only has, a story of his own 15 years.

Was, the your diagnosis, 2011 2011.

Take us back there.

Tell us what happened.

So, it was July 4th of never forget weekend.

I just come back from back to back trips in Europe and in Japan.

I thought I had jet lag.

I was mowing the lawn and passed out.

So they took me by ambulance and midnight that night, they said something.

Same thing.

Doesn't look right with your blood.

They did a boomer biopsy on Monday, and on Friday I started chemotherapy.

And, I was in the hospital six months.

I needed a bone marrow transplant.

I have AML, acute myeloid leukemia, like Shin and, prognosis back then, we didn't have a lot of the developments that we have today.

I had a 5050 chance to make it to the end of the year.

I had a chromosome, that wasn't working.

Turns out it's the chromosome that matures your red and white cells.

So that's what was causing the leukemia.

So I had a transplant on November 14th of 2011, went back to work.

About a year later, I had a pulmonary embolism.

I threw a blood clot, went in.

They took care of that.

And then, they told me it's time to retire.

I had a C level job with Care Stream Health, and they said, you can't take the stress.

So I retired on March 31st.

On April 5th, they fell out of remission and, needed a second stem cell transplant and went in and had that transplant.

And that was on June 3rd of 2014.

And then after that, I've been doing maintenance chemotherapy now for about 13 years.

So I've had 110, 3 to 5 day sessions of chemotherapy, in the last 15 years.

But hey, I'm here and I'm functioning and enjoying life.

So do you mind if I just ask about the chemo?

Yeah, absolutely.

You know, because up close in my own life, in recent years, I've seen chemotherapy for breast cancer, chemotherapy and a pill form from a different family member.

What is the form of your chemo and what is what are those three a 3 to 5 days like?

It's a great question.

So it's a subterranean.

It's a needle which I get on my belly.

Okay.

And I was a little heavier then, so I used to get three needles a day for five days.

That's a lot of folks.

I lost a little weight, so I get two needles now, and we reduced that down to three days, so.

Yeah.

Okay.

And are you doing that at home, or are you doing a no no, no, I go to the cancer center to Walmart.

I've been treated there from day one.

And you stay overnight when you do the treatment.

No.

You go in the advancements that we've made.

Yeah.

In the old days you'd probably have to stay.

And even the treatment that you're in and go.

I was in a clinical trial back then to try going home in between chemotherapy sessions because they wanted you isolated.

You have no immune system.

And even today we're both immuno compromised because of the treatment.

So you have to be very, very careful when you're around folks.

Okay.

And what now, 15 years later?

I mean, I find it remarkable they told you 5050 to live through the end of the year.

And here you are, a second transplant with 17% chance to survive one 7 in 2014.

In 2014, yes.

It again.

We needed to find a donor very quickly.

And the one that was available, my brother was the donor both times.

That was bone marrow.

Bone marrow donor.

Same.

Similar to what channel?

True.

Yeah.

So, you know, you're beaten odds here, and you're doing pretty well.

You look great.

I mean, how do you feel?

I feel great, I mean, I'm older now, thank God.

Well, we all are.

Ralph, I was 58 when I was diagnosed.

Then the odds were pretty slim that I'd see 60.

But here I am, and I, you know, my wife and I decided what's important is our faith, our family, and then what we do philanthropically.

So we started to get involved in giving back our time.

And then financial support for the Woman Cancer Institute, specifically for the work that's going on with lymphoma and leukemia.

You know, so that that's why I'm on the various boards that you mentioned earlier.

It's a long and illustrious list.

We do a lot of fundraising right now.

Team only is involved in the Walmart Warrior Weekend, which is on September 20th.

We've raised their donated $950,000 year to date and are approaching a million.

So I'm really proud of that.

And I'll add is focused on the research that is being done at Walmart.

Do you want to briefly mention the Walmart where your weekend with people that you want people to know about, that.

That's okay.

Absolutely.

So I can't do it.

But you know so go ahead.

Yeah.

That's, this will be our 14th year.

And, I was I've been there for 13 years.

My 13th year.

And we started out with a walk run.

And it looks like this year we added a bike race four years ago, we'll have over 2400 people participating.

It's on the Xerox campus.

And we as of today, we've raised close to $600,000, and we think we're going to raise $1 million this year for research.

And what we use the money for is Doctor Loh was the beneficiary of some of the money that we raised last year and was given some seed money for one of the studies that she's doing.

So we that that makes us feel great, that we know that we're raising money, that people that'll be treated that will probably never meet, you know, our our experienced doctors at finding cures for those folks so that their path will be easier than what Shannon went through and that what I experienced, what what a tremendous gift you're giving to the community.

And in our second half hour, we're going to talk more about clinical trials.

Doctors here are very keen to talk about what they want you to know about clinical trials.

If you are ever a patient or just if you are a family member of a patient.

Asked about the state of research, where it is now, where it may be going.

So there's a lot more coming up.

And there are other things happening this month.

To, to bring people together to raise money.

We'll talk more about that.

If the the guests want to talk about that, what we'll do now is we'll take this only break of the hour, and then we'll come back with Ralph and Shannon, who are telling their stories, Doctor Carla Casulo and Doctor Melissa Loh, who is, they are here to bring us the professional expertise to understand blood cancer treatment, the state of research and what everybody should know.

So let's take this break.

We'll come right back with Connections.

Coming up in our second Our Connection Summer sessions theme this week is music.

And next hour we bring back a conversation about the Data Brothers.

We talked to John Daly about his late brother Joe, and we talked to author Christopher Shannon about the brothers and their story, the way they built their musical story in Rochester while holding on to their Irish identity.

The story of the baby brothers, a great one.

Next, our.

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This is Connections.

I'm Evan Dawson Chris in Geneva writes to the program and says, Evan, being 71 days into my own bone marrow transplant, I was cancer free at 40 brutal days and have been slowly recovering my strength since Doctor Omar Al Gitau.

We and his staff are doing magic at the molecular level.

After 17 years of daily chemo pills, I'm starting to struggle with what to do with a suddenly healthy life.

A good problem.

We are lucky to have strong mastering this delicate work again.

That is Chris in Geneva.

Thank you Chris.

Much love to you, boy.

I'm glad to hear you're doing well.

And I mean, Yeah, those are the days after the bone marrow.

How what are the days of during a bone marrow transplant?

Shannon?

What are they, like, uncertain?

The odds are in your favor after a bone marrow transplant.

Certainly better than before.

The process is very scary.

A lot of things run through your mind.

You actually start treatment to dissolve your bone marrow with chemotherapy and radiation, five days before your donor donates the stem cells for your transplant.

So that's a little, nerve wracking.

I stayed at the, cancer hotel up the street from strong.

That is a beautiful place.

I believe that's solely run on donations.

And it just makes going back and forth, a little easier before your transplant, because you can anticipate being in the hospital for 6 to 8 weeks after transplant.

So it gives you a little bit of freedom, beforehand.

So although you're not feeling well, a lot of nausea, a lot of, fatigue, and even, days after going home, months after going home, you're still very, very tired.

I'm just now getting to where I have energy back.

And I'm able to, start living life as almost as if I did before.

And, I don't know, for to ever truly be back there, but pretty close.

You want to add to that?

No.

She's right.

I mean, the first 30 days are the most critical after a bone marrow transplant because, as she mentioned, you're really susceptible to any kind of virus.

And then, you know, if you can get through the first 100 days, you got a really good shot at, staying cancer free and returning to your normal life.

That's an interesting question.

Always in the back of your mind.

You know, you're immunocompromised.

So I used to fly, and I'd have the surgical gloves on and a mask before Covid.

Yeah, I didn't know I was in vogue, I started it.

You do?

Let's go.

But, Yeah, but but if she.

Right, then you have to figure out what.

Why?

Did you know?

Again, I'm a person of faith.

Why did why did God and the doctors find a cure for me?

What does that mean?

You know, I've got.

I've been given the gift of time.

What do I do at that time?

And, I think that's something that I've heard.

You know, the gentleman that, you know, just wrote in and I've heard Shannon say that.

What do you do at that time?

Because it's precious.

Well, clearly, I think people like Doctor Loh feel like you're using your time very well.

What do you want people to understand about listening to Ralph story?

And frankly, some of the work that he's doing now, I think, honestly, their stories are exactly the reasons why we're we're doing what we're doing, doing research to improve what we can right now so that people can live like that.

Ralph and Shannon.

Right.

Because that's what we see.

And that's really the goal of what we do there.

So I, every time I hear the story, very happy.

I mean, a lot.

Unfortunately, this doesn't happen to too many people, especially in acute myeloid leukemia.

And especially in the older age group.

Most people don't make it to stem cell transplant, which is really the only option to quote unquote, cure.

Although I don't like to use that word because we know we're really no, but that's really the the only option, at least in 2026.

In the younger options, sometimes chemotherapy or just treatment alone may be sufficient.

But bone marrow transplant is tough, right?

You hear the story and not everybody can go through that for a variety of reasons.

So what can we do in multiple ways to support people to getting the bone marrow transplant.

And if they don't get it, it's also okay.

There are other ways to treat it.

And again, comes down to what they care about and what they what their preferences are, because some people might not want being in the hospital for 30 days, 42 days, it takes about a year to get better from bone marrow transplant.

And, you know, a lot of people will say, I don't want to be in the hospital.

You know, I'm I'm okay living shorter, but I'll use that time to spend it with my family.

And that's okay.

So again, it's not one size fits all, really depends on on what people care about.

And we have different options now that can really align that with what people care about.

My stepfather died at 91, and in the last 10 or 15 years of his life it felt like he had I mean, the list of maladies was incredible, but he dealt with them on his own terms in ways that there were times where the family wanted him to be more aggressive, or he would say, I can do radiation.

I'm not doing chemo.

You know, those were conversations that he and my mother had that our family understood him to be really thinking through, and he ended up with a good quality of life until, you know, until the very, very end.

And I really respect the decisions that he made because he made them very clear eyed understanding, okay, maybe I don't live to a certain age.

He ends up living to 91.

That's wonderful.

But how do you help people who might be struggling, who might say, I'm scared or I don't want to deal with extended amounts of pain or, you know, it sounds like a transplant would be brutal.

I'm.

How do you work through the right path for each person?

Thank you for the question.

I mean, that's really the core of what I do clinically and also research.

I think the first thing is get them and their family together if they're there and really laid it out, what do they care about the most?

Right.

Like kind of be really clear.

There is no right or wrong answer, Hugh.

And I always say that right.

There's no right or wrong answer here.

Whatever decision you make is the right answer.

And then just make make it clear and make it open that they they should share what I really feel like is important to them.

I think oftentimes, I mean, I'm guilty of that too.

Doctors often just start laying out all this options and then say, hey, like, what do you think?

Could we could we kind of switch that a little bit and start with, hey, what matters to you first?

And then we go into the detail here.

Here are the options.

And based on what you've just told me, this is what I think align with what you care about.

What do you think about it?

I think if if we can do that, I think that's one component of that.

The other component is again going back to if we have two, seven, eight year old, they might have very different health.

One of them could look like 50 or 60.

Yeah.

What we call biologically the other one might look like 90.

And options could be very different.

So it comes down to their health, comes down to what they care about.

And also comes out to what they and their family, the dynamics and how they make decisions.

And we can get all that information and built that into when we make decisions.

I think we're making the best decision for that person.

And again, every person is different.

And those conversations are really important to figure out what matters most to to get to the best decision for that person.

Doctor.

Because I got to think the hardest question doctors sometimes get is, well, what would you do if you or me did you do you hear that?

We hear that all the time.

And or if I were your mother or if I were your father.

But, you know, honestly, I would do the same thing.

I try to, you know, visualize myself in that situation, and I give the same advice that I would give a family member or that I would think of for myself.

And I wanted to, first of all, just recognize Ralph story.

And thanks for everything that you're doing for the Walmart wear your weekend.

And for Chris.

I'm happy that things are going well with the transplant, but I just wanted to pivot a little bit, to talk about what Ralph mentioned in terms of, you know, you participated in a clinical trial, and now you're sort of paying it forward and raising money to fund research that's done by Doctor Loh.

And I think that that is something that really fuels me and inspires me to come to work every day.

And hearing your guys's story, it fills me with so much joy to see how well you're doing and really motivates me to come to work every day.

One of the things that is different from what Doctor Loh and I do is that I see patients with, one area of my niche is called follicular lymphoma, which is a form of, lymphoma where patients can live a very, very long time.

So there's a very long survivorship component that's embedded into that diagnosis.

Similarly with Hodgkin lymphoma treating young adults there's a very long survivorship period.

So in my perspective is similar shared decision making.

How can we help you come to the best decision to treat your cancer today, but preserve the next 20 years of your life because sadly, one of the things that we encounter is treatment related toxicities and late effects of cancer that have nothing to do with the cancer itself, but are subsequent from their treatment.

And so one of the things that we're really looking to do is make treatment safer, make treatment less toxic, make treatment less focused on chemotherapy and more targeted therapy and immunotherapy in order to really, you know, enable patients to live with the type of life that you can be both cancer free, symptom free, toxic, toxicity free, kind of hit all of those milestones.

So that's a really important thing that we're working on right now.

How do you want our audience to think in general about clinical trials.

So one of the things that I've seen a lot is a misconception about clinical trials, that it's really only for someone who's at the end of their life.

And I really want to make the point that clinical research is for everyone.

It's for those who are at the beginning of their cancer journey.

It's for people that are in and out of out of remission.

It's for someone who's, in survivorship.

Clinical research is looking at non treatment interventions.

It's looking at exercise.

It's looking at yoga.

It's looking at treatment.

So I really want to emphasize that clinical trials are for everyone from the time of their diagnosis all the way throughout their journey.

And please always consider talking to your doctors about clinical research, because it's really the only way for us to move new treatments forward.

Hello.

Do you want to add to that?

I just want to emphasize again, yeah, clinical trials are for everybody and there are different kind of clinical trials, clinical research that you can participate.

And and the information that you give and can really help what we do in the future.

I mean, that's what research is about.

And again, going back to the stories of Jen and then Ralph, we are where we are because of everybody who have contributed to clinical trials in clinical research in the past.

And so the, the that's really the only way for us to, to be better, do better, and then, provide the best care that we can.

Can I ask both the doctors, are you optimistic that AI and other technologies will advance the kind of information you have on how to treat?

I mean, are we going in a more positive direction because of AI?

Is this the one area of society I can be optimistic about AI, and I think that's kind of what I want.

I don't think it matters whether or not we're optimistic for it, like it or not, it's coming.

It's like internet and cell phones.

We just have to deal with it.

And so we just have to deal with it in a way where it's going to help us, because I don't think it's going away.

And so being pessimistic and optimistic, does it change anything?

I'm pretty practical, so it doesn't really change it.

So we just have to leverage, you know, the resources that we have and learn how to best use it and teach the people around us to use it in a way that is going to be helpful and not detrimental.

Right.

Because every day I expect my my patients to come in.

And in fact, many of them do have already talked to AI and say, hey, here are the options that I choose to be.

What do you think?

Is it going to make treatment move more quickly?

Are we going to see better research in the short term?

You think because of it I so personally I do think it's helpful in certain areas and it's it's learning how to research it in a way that's ethical and also, the right way.

Right.

Because research can be can be good and bad.

So it's AI.

And so what are some ways to really leverage AI to improve what we do.

And there are certain things that I cannot replace.

So human connection is an example.

You cannot use an AI to communicate with patients and take that human touch away.

It just doesn't work.

Right.

So there are situations that we have to know I just cannot replace.

So how do you augment that and how do you use it.

So we can be better in what we do.

So I this is pretty controversial.

Everybody feels differently.

I just don't think it's going to go away.

I think we just have to deal with it.

We just have to deal with it in a way that's optimistic.

And she is right.

My my doctors, I love them.

They are my doctors turned friends.

I keep in contact with most of them, and they gave something to me that I could never.

You agree with that?

Well, I would fully agree.

Yeah.

I mean, my in college is Doctor Lee's fellow 15 years she's been treating me and, she's part of the family.

She.

Shannon's exactly right.

And shout out to Doctor Casulo and Doctor Loh.

I mean, if it wasn't for them and their collaboration years ago, we wouldn't be here.

You know, they really work well together, as as a group that will not share their knowledge.

And when they get a tough case like Shannon's or mine, they put all their heads together, and then if they need to, they'll go outside and they'll go to other, cancer centers that are dealing with similar things.

And now if we just get our National Cancer Institute designation.

So Walmart's one of the top 4% of cancer centers in the United States.

So and I think there's only 72.

So just think about that in our community here we have one of the top cancer centers in the United States.

That is true right.

Really reassuring.

That is true.

Yes.

Thanks for and and to kind of bolster the point about the human touch, let me read this this note that came in, from a listener.

Doctor Casella treated my dad several years ago, and I still remember her kindness and compassion.

He was deep into his battle with Alzheimer's and was diagnosed with lymphoma.

She told us that just because they can intervene doesn't mean that they should.

It made my mother and I realize it was okay to decide not to do any further treatment and just make the best of the time he had left.

Yeah, I really appreciate that.

And it is true.

We have all this, access to a great technology and information, but it doesn't always mean that it's the right time to use it all.

You have to be very nuanced with your patients, and everyone's an individual.

And in that regard, I think I have good job security that I will not take the place of that sort of looking you in the eye and having a very deep conversation with you.

And so, but on the positive side, I think that AI has offered us a lot of, ability to deepen our knowledge about a lot of different areas.

So diagnostics is a huge area in medicine where AI is making a good positive impact.

You can look at a slide, for example, a piece of tissue and put it on glass, look at it under the microscope, and maybe increase the number of cases that you can diagnose because you can do it a little bit faster.

It's also, helping us find within radiology images and cat scans, things that maybe were not visible or took longer to diagnose.

So in that regard, I think it's something very positive and helpful.

But, you know, with anything, with any emerging technology, you have to be careful and use it with, grace and with ethics.

But I view it as something positive.

It helps people get access to information.

I certainly use it to help conduct research.

So I think it's a very important tool used properly.

Well, we're going to get some phone calls in just a second.

I also want to mention that part of the reason we're here today is, a woman named Carol Anthony had reached out to us from Harbor House of Rochester, and she wanted to tell us, also about, like, the night, blood cancer United's annual, awareness fundraiser for blood cancer awareness in September.

And it happens in cities all over the country.

Rochester version of life.

The night of September 19th from 430 to 6, and begins with a short tour of hope Lodge as well as the Light Tonight Courtyard Walk on the campus of Saint John's.

And so, Carol, I just want to thank you for pushing us to have this conversation and to kind of put the spotlight there.

Yeah, I mean, Carol is a great advocate, too.

And, you know, she's pushed us appropriately.

So that's why we are here today.

So thank you, Carol Anthony, for that.

And I think part of why I was asking about where even I is taking us is I just kind of want to hear from both the doctors briefly in five, ten, 20 years, what is the best case scenario for where we can go with treating the cancers that you treat here?

You know, we are here today and in a generation, where do you think we actually can go?

I see it, you know, sort of the ideal world.

I see it as accelerating our ability to treat patients faster.

Let's say you get a bone marrow biopsy, you get a blood test, you get a Cat scan, and then we can look at the DNA markers.

We can look at the profile of the cancer type and then make faster decisions about how to personalize treatment.

So that's something that I can help us leverage because it'll give us the information a lot faster.

It's kind of like having a really old MacBook and then getting the newest one.

You know, the processing speed is faster.

So I think that could be a way where we can leverage it for faster diagnostics and treatment.

Okay, doc alone.

So I agree with that.

I think that's the biggest area where as we get more, personalized matching treatment to the cancer and the person how to use AI to get there.

I think the other area that, be interesting to see is how we can use AI to improve access to some of the things that otherwise we cannot provide.

So I'll give you an example.

Exercise.

A lot of, the services are in-person or cognitive behavioral therapy.

They're they're currently being delivered by a person.

Usually require you being in the facility.

How do you use AI to to automate some of it?

And how do you improve access and allow people who otherwise cannot get to the services to to use this?

And I think it has great potential to get there.

And also, you know, activating patients and helping them to get information that's trusted and reliable before and after they see the doctor.

Because we know people get information in many places beyond the doctor.

So how do we leverage that to to help get people to the place where they feel like they're making the right decision?

Because information doesn't just come from doctors or medical facilities?

Interesting.

All right.

Speaking of Caroline, I think she must have her ears.

Must have been ringing there.

We were just talking about you, Carol.

She's on the line with us now.

Welcome.

Thank you for being with us.

Carol, how are you?

Are you there?

Caroline, I really need to be on the show.

Oh.

It's okay.

Thanks.

Thanks for this very illuminating discussion.

Well, listen, thank you for pushing us to have the conversation.

And just briefly in 30s, can you remind people what is coming up this month?

I mentioned it briefly, but the floor is yours.

Carol.

Go ahead.

No, I just wanted to encourage people to come out and join us for, like, the night, in Rochester.

First time it's been presented to you in a number of years.

It's, September 19th, Saturday starting at 430.

Because Doctor Vogel will actually be elaborating on, some of the work that she's doing, you know, to improve quality, quality of life for breast cancer patients.

And I know it's going to be, really exciting and, inspiring.

Sharon will be there as well.

So I just come and help us light the night in Rochester.

You know, let's put an end to these terrible diseases.

Yeah.

Carol.

Thank you.

And much love to you.

And and, continued best of possible outcomes and luck for you.

I know everyone, has been through so much, and I do appreciate you taking the time to call in.

Thank you very much, Carol.

Thank you.

Thank you Evan.

Thanks.

Great.

Great to hear from Carol.

And then Gene and Webster, we got to do this real tight.

I'm going to give you about a minute, Jim.

We're going to be at the end of the show.

So you get the final word.

Gene.

Go ahead okay.

I'm really glad to hear this, show today.

I'm also really glad that there are new treatments out there for this camera.

When father died from it in 1989, he was being treated.

It shouldn't be for a hospital in Detroit.

He collapsed in the shower and went to the doctor's office.

The doctors did a quick CBC and sent him from the doctor's office to the hospital.

By ambulance.

Doc had no idea when my dad was coherent and talking.

He they thought they had it in remission in July.

Came roaring back in August.

He was going in October.

Sorry over that real, really, really quick.

And there was not much they could do at that point.

He was 59, and not in great shape.

But, you know, they do, but they could and, he was able to get to my daughter's or my daughter's, you know, dedication, which is like a baptism, at my church.

And, I was grateful for that.

Well, Gene, I am sorry for your loss.

I know the panel feels the same way, but, as you have heard this hour, how quickly things can move.

That part of the story is very, very common.

Certainly, we hope for continued better outcomes.

And what we're seeing with people like Ralph, whose story is pretty similar.

You know, Ralphie, I know you're grateful for the time that you have had and not everybody.

Jean's an example.

Her family, you know, faced a very quick loss.

But I want to thank our panel for illuminating the story of blood cancer and treatment this hour.

Ralph, only.

Shannon.

God love continued good health to both of you.

Thank you for sharing your remarkable stories.

And you're going to see them at various events that we've talked about this hour.

You'll also see Doctor Loh.

Doctor Casulo, thank you for sharing your expertise.

Thank you for being here.

And clearly, from the feedback, a lot of patients in this community appreciate the touch you bring to your work.

Thank you both very much.

More Connections coming up in just a moment.

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