What to Do When Chemo Is Delayed
Wait, what? That can really happen? Yes, sister, it can. Stick with me and I’ll tell you what to do and why it’s more important than ever to stand up for yourself.by Sabrina Skiles Patient Advocate
I was halfway through my weekly Taxol chemo treatment for breast cancer and I was feeling good. Well, as good as a cancer patient could feel. Does anyone else going through cancer feel weird saying that? Thankfully, I hadn’t been experiencing any side effects, like fatigue or neuropathy. So, I was ready for my next treatment. Little did I know, God had other plans.
Normally, after the nurse takes my blood to check my white blood cell counts, she comes back less than five minutes later. This time, it took longer. I was very aware of that. As I was scrolling through Instagram for some encouraging words as I always do, she returned and stated, matter-of-factly:
“So, you can’t get chemo today.”
Like I should know what happens next.
My blood began to boil, and I started getting angry.
“Your white blood counts are too low, which is very common, but that means you can’t get chemo today.”
No one told me this could happen.
For those wondering, it is very common to have your white blood count drop during chemotherapy. It’s called neutropenia. I know this because as soon as I left the appointment, I literally googled low white blood count due to chemo. I clicked on the first link from the American Cancer Society website which said neutropenia is defined as a lower than normal number of neutrophils (a type of white blood cells). White blood cells are part of the immune system that defends your body against infection.
When deciding whether or not to give you chemo, doctors look at the number of neutrophils you have. If your neutrophil count is low, the doctor may say you are neutropenic. For most people with cancer, having a low neutrophil count is the biggest risk factor for getting a serious infection. Since you’re already at a higher risk of infection while undergoing chemotherapy, having your white blood cell count decrease only makes matters worse.
I only knew this after my appointment. Standing there at the infusion center, I literally had no idea what they were talking about. “This is extremely common,” the nurse kept saying. “Don’t worry, I’m sure it will be back up next week. If it isn’t, we can talk about getting a shot to increase your white blood cells.”
And that was that. I was stunned and flabbergasted. I had no idea what to do. So I grabbed my chemo bag and left.
Coming to Terms with Delayed Treatment
As soon as I got back to the car, I broke down. It just hit me like a ton of bricks. From the very beginning of chemo, I had an end date. I saw the finish line. Now that was getting pushed back further.
This wasn’t supposed to be happening. Then again, cancer wasn’t supposed to happen to me, so why should this be different? You think you’re doing everything right during treatment: washing your hands, eating healthy, staying away from people who are sick. Then a hurdle gets thrown in your way, and it’s devastating!
Here are the facts: When you’re going through chemotherapy, your white blood cell counts need to be between a specific range based on your weight and height in order to be considered safe for treatment. Mine needed to be between 1.6 and 2.5. On this day, my counts were .6. Apparently, my counts had been decreasing because when I looked back at my lab results (I always get a copy at each appointment), the previous three weeks’ numbers went from 2.2 to 1.5 to .6. Had I known that this was a major problem two weeks ago, the conversations with my nurse and doctor would have been different. Why were we not talking about shots to increase my white blood counts much earlier?
Here’s another fact: The shot the nurse mentioned is known as growth factor support (GSF), and it’s made from proteins that stimulate the bone marrow to produce more white blood cells to help the body fight infections. Your doctor might recommend it should your counts decrease below your specified range.
I left that day with the intention of practicing good hygiene, being vigilant about washing my hands, and staying away from sick people—three things the nurse said could help me maintain a good level of white blood counts. She also said that I wasn’t at the point where I needed to wear a mask when I was out in public places to protect myself from germs. This was pre-COVID, mind you. I was relieved, because I thought wearing a mask meant that I was really sick. Little did we know how much the world would change in a matter of months.
Handling Another Setback
When your neutrophil count decreases, you also need to give your bone marrow a chance to recover, get stronger, and produce more white blood cells. So that was my plan over the week following my delayed chemo appointment.
Seven days later, I went back—and learned I still couldn’t get chemo because my counts were too low. Upon hearing this, I fully expected to start discussing the process of getting the GFS shots to increase my counts. But that’s not what happened.
“Let’s try again next week,” the nurse basically told me. I was so stunned that I just thought to myself, OK, we’ll try again next week.
I start walking out to my car, then stopped, confused. Wait, they said if my counts were still low then I could get the shots today. So, why were we not talking about this?
No lie, I walked right back into the infusion center and asked to speak with my doctor. Turns out it was her day off, so I talked to the nurse. Very firmly and politely, I told her I wanted more information on why I couldn’t get the GFS shots today because that’s what I was told last week. I wanted answers because I didn’t want to delay my treatment another week. If I came back next week and they were still low, that was going to be three weeks of not having treatment. I did not want that. These were the exact words I used.
It’s easy to feel intimidated in a situation like this, but you have to advocate for yourself. If you are not getting the answers that you want, then push for those answers. There is nothing wrong with standing up for yourself or for your loved ones. If my counts were going to continue to decrease, why would we not start me on the GFS shots that week? Also, taking into account the insurance approval process and however long that would take, I wanted to be able to start that process sooner than later.
The nurse kept telling me, you know it’s very common to have chemo delayed, it’s not detrimental to your health to have it delayed. She didn’t know who she was talking to. I’m thinking: It may not be detrimental to my physical health, but my mental health is taking a big hit. And I’m not going to have that happen for yet another week.
Finding a Solution
Ultimately, it wasn't a decision the nurse could make alone, so I went home and waited to hear from my doctor. My oncologist called me the next day and gave me an in-depth explanation. This is what I learned:
The GFS shots have to be given 24 to 72 hours after chemo and not within 24 hours before starting chemo in order to be effective. Because I was on the weekly Taxol regimen, there was no way to get the GFS shots, timing-wise. Had I been doing the dose-dense therapy (chemo drugs every three weeks), I would be able to get the shots. I know, lots of information.
At this point in my treatment, my oncologist said I basically had two options. Option one: Keep doing the weekly treatment and hope that my counts increase enough to continue chemo. Option two: Switch to the dose-dense regimen where I would receive Taxol every three weeks. Because I’d already had seven out of 12 treatments, that meant I would only need two more treatments of Taxol. With a dose-dense regimen, you also receive a higher dose of your chemotherapy medication, just not as often. (There is a greater chance of developing fatigue and neuropathy of your hands and feet should you decide to do the dose-dense regimen.)
Another thing for me to consider: Because I would only be receiving two more treatments, the chances of side effects were lower than if I’d done the dose-dense schedule from the beginning. On the other hand, if I decided to do the dose-dense regimen, I would also be getting the GFS shots to make sure my counts increase—and those had a risk of bone and joint pain. My oncologist said she wanted to call me personally because she wanted to make sure I knew I had options. I’m thinking to myself, why can’t every doctor be like this! With the information I now had, I felt good about making an informed decision. I decided to do the dose-dense regimen.
I went back that following week. If you’re keeping count, this means I hadn’t received chemo for three weeks. But this time, my counts were up and I was able to get chemo! I received the dose-dense regimen of Taxol that day. I went back 24 hours later to get the GFS shots. And three weeks later, I had my last round of chemo. Not to mention, my white blood cell count was at 2.6—so the GFS shots must have helped. At least, that’s what I’m telling myself!
Listen, cancer has a way of making you slow down in life. And this hurdle in the road definitely made me slow down. But it also kept me aware of what I was fighting for: my health and my family.
So sister, keep fighting and moving forward. And speak up! Because there are options out there and you deserve to know your rights as a patient. Remember, you have the STRENGTH to get THRU 2DAY and We’re Stronger Than Cancer. Both of these are affirmations that have helped me through these tough times.