Symptoms Spotlight: Neutropenia with Abigail Johnston and Melanie Sisk

In this episode of the Symptom Spotlight Series, hosts Abigail Johnston and Melanie Sisk are joined by Dr. Jill Tirabassi, this podcast's team member, to break down neutropenia. It is one of the most common and important side effects of cancer treatment.

Dr. Tirabassi explains what neutropenia actually means, why neutrophils matter, and how chemotherapy and CDK 4/6 inhibitors can deprive your body of these critical infection-fighting white blood cells. The conversation covers what happens when your absolute neutrophil count (ANC) drops too low, when your oncology team might delay or reduce your dose, and what medications like bone marrow stimulators (and the auto-injectors that deliver them) can do to help.

The hosts also share their own personal experiences: from managing bone pain with loratadine (Claritin), to navigating a hospital admission with a dangerously low ANC, to learning what questions to ask your doctor before a fever or infection hits on a weekend.

Topics covered:

• What neutropenia is and why it's a concern during cancer treatment
• The ANC number your care team watches and what happens when it's too low
• Bone marrow-stimulating drugs: how they work, timing, and side effects
• Lifestyle tips (diet, masking, sleep) when your counts are low
• CDK 4/6 inhibitors and dose reductions
• When to call your doctor vs. go to the ER, and why that conversation matters

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Until next time, take care and keep pushing for progress.

Transcript

SPEAKER_01 0:10

With your footstands surfaced as any thing, we'll come to life from stage four, where MBC takes center stage as we talk to experts, share inspiring stories, break down signs, and shine the spotlight on what matters most. Because when it comes down to it, the spot, for us and by us, is all about us.

SPEAKER_04 0:36

Hi, I'm Abigail Johnston.

SPEAKER_03 0:39

Hi, I'm Melanie Sisk.

SPEAKER_04 0:42

And we're here today to talk about symptom management. This series is called Symptom Spotlights, and we will regularly be bringing information to you on various symptoms caused by cancer or the treatments for cancer and how different patients are managing them. We learn so much from each other. What a great example of how we are stronger together.

SPEAKER_03 1:03

And we are so excited to bring this hard-won peer wisdom directly to patients. And please let us know if there is a symptom you would like us to talk about. And now let's get to it. Abigail, what symptom are we shining the spotlight on today?

SPEAKER_05 1:20

Today on our Symptom Spotlight series, we're going to be talking about neutropenia. And we have one of our other podcast friends, Dr. Jill Tiribasi, on today to talk about that. So, Jill, over to you. Will you tell us a little bit about neutropenia?

unknown 1:38

Sure.

SPEAKER_00 1:38

Hi, Abigail. Hi, Melanie. Nice to see you today. Neutropenia, if we break down the word, is really two parts, neutro and penia. Penia means something that is low. And neutro stands for neutrophils. Neutrophils are one of our super important white blood cells that helps fight infections, namely bacterial infections. And so when we hear that someone's neutropenic, one of the things we worry the most about is someone being at increased risk for infection because their body might not be able to fight off things. Living life, we eat things, we get cuts, we get hurt, we breathe in things, we're always getting exposed to infections. And so our neutrophils, the nutrient of neutropenia comes from, they're one of our first lines of defense when something gets inside us. And so they're super important. Unfortunately, a lot of the treatments in our cancer treatment plans can affect this line of white blood cells, most commonly chemotherapies. And so one of the things that your doctors are always looking at before you get your dose of chemotherapy, when you get your blood draw before chemo, is your neutrophils. And so when you look at your CBC, your complete blood count, you look at a line that says absolute neutrophil count, A and C, and there's a certain number that our doctors like to see it above. And I can guess generically what your doctor might want to see, but that's obviously between you and your doctor. And so as long as you're above that number, you're good to go in terms of that marker. Obviously, they're also checking out kidney stuff and liver stuff and all the other stuff. That's a really important number. But unfortunately, especially after you've been on chemo and getting repeated treatments and in the metastatic setting, sometimes you're on chemo as long as you can tolerate it or it's working, right? The neutrophils decrease. And so there's lots of ways to counteract that out there now, which is great.

SPEAKER_05 3:28

So you get your CBC, there's the number, whether you're in the range or not. When people have too low of an ANC or an absolute neutrophil count, what typically happens then?

SPEAKER_00 3:43

It depends, right? And this is where you and your doctor will have to talk about it, because just depends on whether things have been studied. They might have you wait a week or they might just delay a dose and recheck a lab in a couple days just to see if it bounces up. In other cases, maybe if you really need to be getting that chemo, they might be able to give you a drug to help promote your bone marrow to create these white blood cells. And that's something I unfortunately have a lot of experience with. And we can talk about that more soon. But it just kind of depends. There's a few different ways to approach it.

SPEAKER_05 4:14

Okay. So it's not the end of the world. There are things or interventions that potentially could boost a neutrophil count. We hear people talk all the time about should I change something in my diet? Should I mask up? Should I fill in the blank? Are there other things that we can do as patients if neutropenia has shown up as an adverse event?

SPEAKER_00 4:37

Yeah, definitely once your numbers are getting really low. And I would say if you're below 500, it's just one of the red flag numbers, you're really in that danger zone of a low neutrophil count. And so at that point, that's the mask up, try to avoid infectious situations. I'm not an ecologist, so I'm gonna be very clear. I don't want to give medical advice, but that's one of those things where we start to get worried that your body might get overwhelmed if it were to encounter some sort of infection. In terms of food, because you mentioned diet, always always good questions. But a lot of times once our numbers are really that low, you want to avoid like raw foods, things that have a potential infection risk. A lot of us are women, and maybe we remember the pregnancy, do not eat these sort of things. I always hated that list. It's gonna be it seems so restricted and barbaric at the time. But some of those similar kinds of things are just there's just some foods that are more high risk for bacterial infections and contamination. In terms of what you can do to get your white count up, it's interesting. I've looked into this a few times. And so this is really me as a patient just trying to grasp onto anything. Obviously, getting good sleep, exercise, all the things that help us boost our immunity are helpful in a general sense. But to like really get that number up itself, that's where we need our medical colleagues to help out.

SPEAKER_05 5:58

Well, then let's talk about that. So there are medications that you said would promote white blood cell creation in the bone marrow, and they have to be given at a certain time, right?

SPEAKER_00 6:10

Yes. And it's very interesting because just this year, just recently, a small but nice study came out that showed that maybe we can actually even delay a couple days. But in general, at least 24 hours after your chemo, you can get an injection of one of these bone marrow stimulators. And there's a few different ones and biosimilars, a bunch of different names, to increase your white count in theory for the next round. And you really want that to get in about 14 days before your next round. The new study, which was interesting, was talking about that even if you maybe delay it from usually the one to two days afterwards, maybe to three to four days, there's less side effects for the patient, like less bone pain, et cetera. I don't know if anyone's changing practice based on that small study yet by any means, but it's interesting to see that out there because that's something as a patient that I've encountered is the side effects from that bone stimulating drug, namely the bone pain afterwards, the achiness afterwards. Yeah.

SPEAKER_05 7:08

It's good to see that they're looking into the possibility of that in the future. I know that I've heard lots of people talk about, especially prior to some of the injectors that go on your arm or wherever you put it, people actually having to give themselves shots. I think you had a recent experience with one of those injectors, though. What happened?

SPEAKER_00 7:28

Totally. I've done both sides of the spectrum. I've given myself those shots many years ago. And now the auto injector is really nice. Generally, they want to place it on you where there's a spot for subcutaneous fat. We all have that under our skin. That's where you want to inject it into. And so usually it's the abdomen or the back of the arm. But this time, it is actually this week, this round, it tried to inject and deploy, but it failed, and it stabbed me and but did not actually get the medicine in. So I actually had to drive in to then get the shot the next day, which was a bit of an annoyance, but we gotta do what we gotta do.

SPEAKER_05 8:03

Right. Yes. So you mentioned there's a little bit of bone pain afterwards, well, or a pretty substantial amount of bone pain. Any other side effects that you've experienced?

SPEAKER_00 8:14

Thankfully, that's really been the only one for me. I manage it by using Liratidine, which also is known as Claritin. It had been a while before this treatment line that I had to get back on these bone marrow stimulating drugs, and I actually forgot the first time. And I quickly remembered why I did that, why I did that Luratidine. So definitely something to ask your medical team about if you're someone who might get the bone pain. NSAIDs, things like neproxin sometimes work for people too, but obviously there's issues with kidney or platelet function and whatnot. So you really want to talk to your team about maybe what's the best med for you if you are experiencing those side effects.

SPEAKER_05 8:51

Yep, absolutely. Always double check. Melanie, did you have any other questions for Jill?

SPEAKER_03 8:57

I'm just sitting here thinking such great information that Jill has given us today. I don't think any of us could have done a better job. One thing I will say, I know that a lot of the first line treatment, the CDK4-6 inhibitors, also affect your neutrophil count. I've not heard of anyone having one of those bone stimulators. Usually they talk about dose reductions, which I think a lot of us have had. And the golden number usually is 1,000 for your absolute neutrophil count before you start your next round. And so I personally have had to have a dose reduction because of my low ANC count, or I've had to wait a week. I think after we kind of had to wait a few times, then we actually talked about a dose reduction, which for me at first was even a little scary because I'm thinking, oh, I'm not going to get as much medication. But that's just me being a human, knowing that it's still an effective dose, right? So there's nothing wrong with being able to dose reduce because you'd rather stay on the medication longer than to take breaks from it. So that is some great information. And that's all I can add because I haven't had any interventions for my low A and C count other than dose reductions. But how about you, Abigail? Have you had any experience with this?

SPEAKER_05 10:16

Yeah, back when I was on a CDK46 inhibitor, I ended up in the hospital because I had something. I think of just like a sinus infection or something, and ended up at urgent care. Of course, on a weekend when I couldn't necessarily get in touch with my doctors. And I got admitted to the hospital because my ANC was low. And my doctor walked in the next morning. Before you understand your medication, your levels, your body, knowing what interventions is also sometimes a little difficult. So if somebody is on a CDK4-6 inhibitor, always a great question to ask your doctor, when do you need to be in the emergency room or when do you need to be thinking in terms of following up if you get a serious infection? Because it was actually more dangerous for me to be in the hospital at that point. Having a low ANC, you're more susceptible, as Jill was talking about, to infections. And there are some doozies that live in hospitals. My doctor was very concerned. She didn't want me in the hospital. So good thing to talk to your doctor about so that you know what you need to do when. And I always feel bad when I go to urgent care because we're a little complicated when we're living with metastatic breast cancer. And those doctors are not always knowledgeable about cancer stuff. So yeah, that's unfortunately was not a great experience for me.

SPEAKER_02 11:44

Doesn't sound like it. I'm sorry you had to go through that.

SPEAKER_05 11:47

But you don't know what you don't know, right? And neutropenia, I'm glad you brought up though, that it is a little different. Our interventions are different, chemo, IV chemo sometimes versus oral medications.

SPEAKER_03 11:59

Yes. I always remember my oncology nurse telling me that if I ever had a fever over 103, that I have bought myself a ticket to the emergency room. That happened to me one time. I had a fever and ended up, they diagnosed me with pneumonia, kept me in the hospital a few days, run some antibiotics through me, et cetera, and then let me go home. So that's always a good time to call your oncology nurse, your doctor, discuss what's going on with your body before you actually run to the hospital like Abigail, because you don't never know.

SPEAKER_05 12:34

Yes. But crises always seem to occur in the evening or on a weekend, right? So knowing if your doctor has an after-hours program or service or what to do when it's in those times is always a good thing too. So lots of things to think about, especially, I think, as we each begin different lines of treatment, right? So figuring out how to adjust for that particular line can be a little complicated sometimes. But for those lines of treatment that include neutropenia, I hope we've talked a little bit about those things today. So if there's another side effect we can talk about at another time with Jill, we know we can have her come back. So thanks for being here.

SPEAKER_02 13:15

Thanks for having me. Thanks, Jill.

SPEAKER_03 13:27

We hope you have enjoyed this conversation as much as we did and learned a little along the way.

SPEAKER_04 13:34

Please don't take any of what we've shared today as medical advice. If you have a question about a product or if an intervention is safe for you, we encourage you to engage with your team. You will find links to each of the products and the interventions we talked about today in the show notes.

SPEAKER_03 13:49

We want to hear from you. Did you enjoy today's spotlight? Is there another product that you have had success with? Is there another symptom you would like to hear us talk about? Engage with us, and you may find yourself receiving samples.

SPEAKER_04 14:06

This episode was produced by me, Abigail Johnston, and my dear friend Melanie Zisk. Until next time, be well and keep thriving.