This is a post about what to expect when having chemo, written by a young breast cancer survivor.
If you or a loved one and are about to start chemotherapy you might be wondering what to expect.
First, let me say that everyone’s chemo experience is different. It depends on what type of cancer you have, what type of chemotherapy you will be getting, the duration of the treatment, and the frequency. Even, doctor to doctor there may be differences in the treatment protocol.
I can’t tell you for sure what your experience will be like, but I can tell you about my own experience with having chemotherapy for breast cancer.
What It’s Really Like to Have Chemotherapy
In 2009 I was 31 years old and newly diagnosed with breast cancer. You can read about my diagnosis and how I found my breast cancer here.
Luckily we caught the cancer early and it was stage one. But, because I had the BRCA gene mutation and the tumor was grade three aggressive and triple-negative my team of doctors recommended that I have chemotherapy to reduce the risk of metastasis (spreading).
In my case, I had a bilateral mastectomy surgery first and then I had chemotherapy. But sometimes patients will have chemo first and then surgery depending on the size and type of the tumor.
Getting the Port Implant
A few weeks after my surgery I had a port-a-cath inserted in order to administer the chemotherapy. They do this for a safer and more efficient treatment delivery rather than placing IVs into your arm. My port was under my skin on the right side of my upper chest, close to my collar bone.
Another benefit of a port is that it makes blood draws easier. The lab technicians don’t have to search for a vein in your arm when you have a port.
The port implant surgery was pretty easy but I still needed anesthesia. So, someone had to go with me and drive me home. I had a little bit of pain afterward but did not need any heavy painkillers.
My Chemo Treatment for Triple-Negative Breast Cancer
My chemotherapy consisted of four rounds of Taxotere and Cytoxan three weeks apart.
I chose to have my chemo on Thursdays because I figured that would give me the weekend to recover with my husband’s home. Then, hopefully, I would feel better by the time it was time for him to go back to work on Monday.
Before My First Treatment
My doctor gave me several medications to take before my first treatment. One of the medications was a stool softener because chemo is known to cause constipation. My doctor also gave me some nausea medicine because I am prone to getting nauseous easily.
First Day of Chemo
On my first day of chemotherapy, we arrived at the oncologist’s office at 8:15 am. Finally, at 9:30 we went into the infusion room at Texas Oncology where they administer the chemo.
It was an open room with lots of lounge chairs. The corner room had lots of windows so it was fairly bright. They asked me to choose a chair near the nurses’ station so they could watch me more closely (they do that for first-timers). My husband was able to pull up a chair next to me and got a tv tray and set up to do some work.
First, I had to fill out some paperwork that included agreeing to the treatment and the possible side effects. Then they started giving steroids and some anti-nausea medication through the port. That took some time.
After that, we had to wait an hour before they could start chemo.
Close to noon, I finally started getting the chemo. Luckily, I had no allergic reactions or any of the initial side effects that they warn about.
For the first round of chemo, the nurse started the drip very slowly. She wanted to make sure that I didn’t have a reaction.
The first infusion took a lot longer than the following ones for this reason.
Physically I felt okay during the infusion. My port was a little bit uncomfortable but it wasn’t too bad. I did have some anxiety though. It’s scary not knowing how your body will react to something.
I was able to eat a little bit while we were there but I didn’t have much of an appetite, mainly because of my nerves. And it’s hard being in a place like that and looking around and seeing lots of other sick people getting treatments and not knowing their outcomes. That was hard emotionally.
Finally, around 4pm I was done with everything and we could go home.
Later that day I felt all right. I mostly just rested.
After dinner, I was tired of being cooped up all day so we went for a walk.
After the Chemo Infusions
About two days after my treatment I started feeling the effects of chemotherapy. It felt like I had a bad flu. I was very achy, and tired, and just overall didn’t feel well. I also had a lack of appetite. Nothing tasted good to me.
Then, a couple of days after each treatment I would get a low-grade fever. It’s very important not to get a fever or infection during chemotherapy and my doctors were a little concerned.
After each infusion, I became neutropenic (low white blood cell count). So after each round, I had to get a Neulasta shot to increase my white blood cell count.
For the next three rounds of treatment that is pretty much how I felt for a couple of days after treatment. I slowly started feeling better and getting more energy just in time for the next round of chemotherapy.
The loss of appetite continued throughout the whole time. I lost about 20 pounds of weight because I just wasn’t eating that well.
Chemo Hair Loss
Right after week three, which was my second round of chemo, my hair started falling out significantly. That was really difficult. Every time I would shower huge clumps of hair would come out in my hands. I finally decided just to shave my hair.
My husband shaved it for me in our backyard. Here is the video of shaving my head during chemo. It was difficult emotionally but physically I felt a lot better after we shaved it. Before that my scalp was very itchy.
For some reason treatment number three was a lot harder on me. It was a longer recovery. The worse day that time, was better than the worse day the time before, but I felt like it was more drawn out.
On top of that, after my third round of treatment, I, unfortunately, had a very bad reaction on my hands. It was basically like chemical burns. They became severely chapped and cracked and it hurt a lot. You don’t realize how much you use your hands and how much they touch things. Even the soft bed sheets touching my hands caused severe pain.
Throughout the treatments, I also started noticing neuropathy in my hands and feet. This was most likely due to the Taxotere.
During my last treatment, I placed my hands in ice water to help prevent the chemotherapy from getting to my hands and lowering the risk of further neuropathy. I also received a lower dose of Taxotere on that last round because the doctors were worried about my neuropathy getting any worse.
During that time, chemo seemed neverending. It was hard for me to imagine being done with chemo.
But finally on December 31, 2009 I had my last chemotherapy infusion and got to ring the bell.
To Chemo or Not to Chemo?
So, am I glad that I had chemotherapy? That’s a tough question. I still have lasting effects that I believe are from chemotherapy. And, I still deal with neuropathy, aches, and pains. I do not know if the Taxotere or perhaps the Neulasta shots caused those issues.
But, I do have some comfort knowing that I did everything I could at the time to decrease my risk of the cancer spreading.
Choosing chemo is a personal decision between a patient and a doctor and it’s important to look at both the risk and the benefits. Be sure to ask your doctor about long-term effects and percent risk reduction. Then, you and your doctor can make the best decision for your situation.
If you have any other questions about what it’s like to have chemo please feel free to reach out. I will be glad to talk to any patients or caregivers and share more about my experience.