What should I know when first diagnosed with acute lymphocytic leukemia?

What should I know?

When first diagnosed with acute lymphocytic leukemia.

patients?

So the first thing we tell patients

when they're diagnosed leukemia is it is an aggressive disease.

And in general, we need to treat aggressively.

So for a lot of our younger patients, what that means is

they'll be in the hospital for a month getting intensive chemotherapy

and likely getting intensive chemotherapy for six months,

followed by two years of maintenance chemotherapy for our older patients,

maybe a little bit less intensive chemotherapy,

but still very intensive chemotherapy with the goal being cure.

It is important at the beginning

to recognize how aggressive a disease this is and it is life changing.

It is a lightning strike.

It is out of nowhere.

These things grow so fast that you are living your life normally

a month prior, and then suddenly you're in a hospital discussing these issues.

So you also have to think about all the other parts of life.

It is important when you get diagnosed with ALL, you think about the fact

that you're going to be getting chemotherapy

now, intensive chemotherapy, probably six months, maybe two years,

and you need to figure out that part of life as a disease

that affects both young and old.

There are a lot of different life circumstances that that

that that are in play here.

When you are when you have a disease like this.

And we need to consider everything.

in general, you know, I we I would say that I don't necessarily

think about the genetic markers of this, but at the same time,

it's always reasonable to ask your doctor,

is this something that has an inherited component?

Less than 5 to 10% of them will be inherited.

And then finally, kind of starting to think about what my life's

going to look like, like as I'm going to get this intensive chemotherapy. So

you are going to be at increased risk for infections, are going to be an increased risk

from being around lots of people because you're going to be increased

risk for viral infections.

So starting to figure out what life would look like

as you're getting treated What should the parents of a child

diagnosed with acute lymphocytic leukemia know?

And I think that the answer is it's scary.

I mean, it's just absolutely terrifying when you get diagnosed leukemia

or a family members diagnosed with leukemia,

you hear cancer and the world stops.

And so the reassurance that we give is that

this is a highly curable disease.

Now, having said that,

it is an intense disease and we have to give intense treatment.

And in general, in children and in young adults,

we're going to give incredible, intense chemotherapy.

And the idea being is

we need to clear every last cell out of the body anywhere it could hide.

If we leave one cell there, it will come back.

And that requires

months and months of chemotherapy and it requires a lot of hospital visits.

It requires a lot of office visits, it requires labs, requires it give blood,

give platelets, it requires a lot,

and it can't be done in isolation.

We often think about when we think about leukemia,

we have to think about the family unit, because we have to think about

how the person's getting here.

Even in my adult patients, how are you getting to your appointments?

If you have to get medicines that make you drowsy?

How do you how do you get home?

And so these are things that we have to think about upfront.

No one can go through this alone and we have to be thinking about all

these things.

Also, as a care team,

we are always thinking about these things, trying to figure out ways to help.

But the other part of that is

if there are difficulties, and I always try to emphasize this,

if you're having difficulties with paying for things

or being able to get here are other issues.

One of the difficulties with ALL is we have

so many treatments needs to be given at a certain time.

And one of the reasons we fail with treatment

sometimes is because things out of our control, financial work

related and tell us and we want to take care of those things.

It's hard enough having a leukemia diagnosis.

We want to make sure that we take care of all the other things

so you can get the treatment that you need.