My First Chemotherapy Infusion Reaction: Why I Learned to Speak Up
- Deborah Ann Martin
- 1 day ago
- 12 min read
When Something Feels Wrong, Tell the Nurse
The first chemotherapy treatment I received did not begin the way I expected.
I was sitting in the cancer center, preparing for my first chemotherapy infusion, when something suddenly felt wrong.
I could not breathe.
I had never experienced a drug reaction before.
I did not know what was happening.
I only knew that I could not get enough air.
Thankfully, I was not sitting alone.
A cancer-center counselor was beside me, and we were sitting across from the nurses' station.
She recognized that something was wrong and immediately called for the nurses.
Within moments, the infusion was stopped and the medical team responded.
That experience taught me something I wish every person starting chemotherapy would hear before their first infusion:
If something feels wrong, tell the nurse.
It might be nothing.
It might be a normal side effect.
It might be anxiety.
Or it could be a reaction that needs immediate attention.
You do not have to figure out which one it is.
That is what your cancer care team is there to help determine.
I learned that lesson during my very first treatment.
And I will never forget it.
Everything Happened Quickly
The nurses moved toward me and began stopping and disconnecting the medication.
Almost at the same time, the oncology pharmacist entered the area.
He had been coming to speak with me about my chemotherapy, the drugs I would receive, and any questions I had.
Instead, he arrived while I was struggling to breathe.
He assessed what was happening and told the nurses what emergency medication was needed.
They treated me.
Gradually, I could breathe again.
I had never had a drug reaction in my life.
And now, during my very first chemotherapy treatment, I had experienced one.
At the time, I did not know exactly what was happening.
I just knew something was wrong.
I Was Lucky Someone Was Sitting Beside Me
The cancer-center counselor was beside me when it happened.
She noticed immediately.
She called for the nurse.
That detail has stayed with me.
Because what if I had been sitting somewhere by myself?
What if I had assumed the feeling would pass?
What if I had been too embarrassed to say anything?
What if I had thought, This must be normal?
Cancer treatment can involve unfamiliar medications, unfamiliar sensations, and unfamiliar side effects.
Patients may not know what is expected and what is not.
That is why I believe one of the most important things a person can learn before chemotherapy is simple:
You are allowed to speak up.
You do not need to diagnose yourself.
You do not need to decide whether something is serious.
You simply need to tell the nurse what you are experiencing.
It Might Be Nothing But Tell the Nurse Anyway
A strange sensation during chemotherapy may have a simple explanation.
It may be anxiety.
It may be a medication side effect.
It may be something temporary.
But it could also be an infusion reaction.
The American Cancer Society advises patients to tell their nurse immediately if they feel anything unusual during an infusion, even if they are not sure what the symptom means.
That is important because the medical team can evaluate what is happening.
You do not have to decide whether the symptom is important.
Let the trained professionals make that determination.
I learned this lesson because my breathing changed.
But the lesson applies to more than trouble breathing.
If something suddenly feels different, uncomfortable, frightening, or simply not right, tell someone.
What Can an Infusion Reaction Feel Like?
Infusion reactions can happen with some chemotherapy drugs and with other cancer treatments given through an IV.
According to the American Cancer Society, symptoms can include:
Shortness of breath
Coughing
Chest discomfort
Itching
Flushing
Rash or hives
Fever or chills
Dizziness or lightheadedness
Fast heartbeat
Nausea or vomiting
Back or abdominal pain
Muscle or joint pain
Sudden unexplained anxiety
Some reactions are mild.
Others can become serious or life-threatening.
Reactions can happen during the first few minutes or hours of an infusion, although delayed reactions can also occur. A person can even experience a reaction to a medication despite never having had a previous drug reaction.
That is why your nurse needs to know when something changes.
Trouble Breathing Is Not Something to Ignore
My symptom was difficulty breathing.
That was not something I could simply sit with and wait to see whether it went away.
If you suddenly have trouble breathing during an infusion, tell the nurse immediately.
The same is true for symptoms such as throat tightness, wheezing, swelling, hives, severe itching, chest discomfort, dizziness, or a sudden feeling that something is seriously wrong.
The National Cancer Institute emphasizes the importance of speaking up about problems and side effects during cancer treatment so the healthcare team can evaluate and manage them.
You are not bothering the nurse.
You are not being dramatic.
You are not failing at chemotherapy.
You are communicating with the people responsible for keeping you safe during treatment.
The First Medication Was Stopped
The nurses stopped the medication that was running through my IV.
The medical team assessed me and gave me treatment for the reaction.
I had to wait and be monitored while my breathing stabilized.
Everything that had seemed routine only minutes earlier had suddenly become very serious.
The American Cancer Society explains that when an infusion reaction occurs, the nurse may pause the infusion while checking the patient's breathing, temperature, blood pressure, and heart rate. Depending on the severity of the symptoms, medications may be given to treat the reaction.
That is exactly why patients should not try to decide on their own whether a symptom is important.
The infusion team has procedures for these situations.
I Do Not Know Exactly Which Medication Caused My Reaction
I do not remember the name of the original pretreatment medication.
I also do not remember the exact names of the emergency medications I received.
They may have included medications commonly used to treat infusion reactions, but I do not want to guess about my medical records.
That information should come from my actual infusion records.
That is an important lesson too.
When telling your own cancer story, it is tempting to fill in details you think you remember.
I would rather say, “I don't remember,” than give someone incorrect medical information.
Your cancer experience belongs to you.
But medical details should come from your medical records and healthcare team.
Pretreatment Medicines Are Part of Some Chemotherapy Plans
Before chemotherapy begins, some patients receive medicines called premedications or pretreatments.
These medicines may be used to help prevent or reduce certain side effects, including nausea or infusion reactions, depending on the treatment plan.
The specific medicines depend on the chemotherapy or other cancer treatment being given and the patient's individual circumstances.
In my case, the first pretreatment medication was followed by my breathing problem.
The medical team stopped it.
Then they created a different plan.
A Different Pretreatment Had to Be Given
After the reaction was treated and I had stabilized, the oncology team changed the plan.
A different pretreatment medication was ordered.
That meant more time.
More medication.
More waiting.
And more monitoring.
My first chemotherapy appointment was already longer than I had imagined.
Now it was becoming even longer.
This is one reason I would encourage anyone going to a first chemotherapy appointment to avoid scheduling something immediately afterward.
You may expect the appointment to take a certain amount of time.
But bloodwork, medical assessments, pharmacy preparation, pretreatment medications, infusion time, monitoring, and unexpected events can all affect the schedule.
I Still Wanted My Chemotherapy
After everything that had happened, I still wanted to receive my chemotherapy.
I had gone through surgeries.
I had experienced severe anemia and a blood transfusion.
I had undergone the procedure to have my port placed.
I had prepared myself mentally for chemotherapy.
I wanted the treatment.
But wanting treatment did not mean I ignored what had happened.
The reaction had to be taken seriously.
The medical team had to make sure I was stable before continuing.
That distinction is important.
Speaking up did not stop my treatment from happening.
Speaking up helped the medical team determine how to proceed safely.
I Still Had Doxorubicin Ahead of Me
Once I had recovered enough and completed the replacement pretreatment, it was time for doxorubicin.
Doxorubicin is a chemotherapy medication used to treat several types of cancer, including some sarcomas.
By then, the day had already been frightening and exhausting.
I had walked into the cancer center worried about losing my hair.
I had not expected to experience a breathing emergency before my chemotherapy even really got started.
But I was still there.
The treatment continued under the direction and monitoring of my cancer care team.
I Used Ice Chips During Treatment
During part of my treatment, the cancer-center staff instructed me to use ice chips to help protect my mouth.
Chemotherapy can cause mouth and throat problems because some treatments affect healthy cells in these areas. Certain chemotherapy regimens may use oral cooling strategies such as ice chips to help reduce the risk of mouth sores, but this is not appropriate for every chemotherapy drug.
I followed the instructions I was given.
After everything that had already happened, even something as simple as chewing ice felt like another medical task.
But I was willing to do what my healthcare team recommended for my particular treatment.
I Had to Stay for Observation
The staff did not simply send me home after the reaction.
They needed to make sure I remained stable.
My first chemotherapy appointment had become much longer than expected.
I had arrived anxious about losing my hair.
Now I had experienced an acute breathing problem.
I had been frightened.
I had been treated.
And I was still trying to process everything that had happened.
The American Cancer Society notes that what happens after an infusion reaction depends on factors such as what caused the reaction, how severe it was, how long it lasted, and how the person responded to treatment. Future treatment may sometimes involve changes such as different premedications, a slower infusion rate, holding a dose, or changing treatment.
The Lesson I Took Home
My first chemotherapy infusion taught me something that had nothing to do with knowing every medical term.
I learned to listen to my body.
I learned that I did not have to know what was wrong before saying something.
I learned that the nurses wanted to know.
I learned that asking for help was not weakness.
And I learned that speaking up could make a difference.
If Something Feels Wrong, Say Something
Maybe you are nervous.
Maybe you are embarrassed.
Maybe you think the nurses are busy.
Maybe you are afraid they will stop your treatment.
Maybe you think someone will tell you that the symptom is normal.
Tell them anyway.
It might be nothing.
It might be something.
Let your medical team decide.
Questions to Ask Before Your First Infusion
Before your first chemotherapy treatment, consider asking your cancer care team:
What medications will I receive before chemotherapy?
What are those medications for?
What symptoms should I report immediately?
What kinds of infusion reactions can occur with my treatment?
Who should I tell if I feel something unusual?
Will my blood pressure, heart rate, temperature, or oxygen level be monitored?
What happens if I have a reaction?
Could the treatment be slowed or changed if I react?
Will I need additional monitoring after a reaction?
Who should I contact if symptoms develop after I leave?
You do not need to memorize all the answers.
Write them down.
Bring a notebook.
Ask questions.
And if you forget something, ask again.
What to Tell Your Nurse During an Infusion
You do not need to use medical language.
You can simply say:
“Something feels different.”
“I don't feel right.”
“I'm having trouble breathing.”
“My throat feels tight.”
“I'm suddenly itchy.”
“I'm dizzy.”
“My chest feels strange.”
“I'm having a sudden feeling that something is wrong.”
Those words are enough to get the conversation started.
The nurse can then assess what is happening.
What I Wish Someone Had Told Me
I wish someone had told me that an infusion reaction could happen even though I had never had a drug reaction before.
I wish someone had told me that I did not need to know whether a symptom was serious before reporting it.
I wish someone had told me exactly what to say if something suddenly felt wrong.
I wish someone had reminded me that the nurses were there to monitor me.
Most of all, I wish someone had told me:
You are not bothering anyone by speaking up.
That is part of why they are there.
Sometimes Someone Else Has to Speak Up for You
I was fortunate that the counselor was sitting beside me.
She recognized what was happening.
She called for help.
That makes me think about patients who may be frightened, confused, sleepy from medication, or simply unable to explain what they are feeling.
If someone is with you during treatment, they can also speak up if they notice a sudden change.
They might say:
“She doesn't look right.”
“She's having trouble breathing.”
“Something has changed.”
“Can someone please check on her?”
You do not have to be certain.
You can alert the medical team and let them evaluate the situation.
My First Chemotherapy Infusion Was Not What I Expected
I had spent so much time worrying about chemotherapy.
I worried about losing my hair.
I worried about what the medicine would do to my body.
I worried about the unknown.
I did not expect my first major lesson to be about speaking up.
The treatment had barely begun when I could not breathe.
The counselor called for help.
The nurses responded.
The medication was stopped.
The oncology pharmacist became involved.
I received treatment for the reaction.
A new plan was created.
And eventually, I received my chemotherapy.
I walked into that cancer center afraid of what chemotherapy might do to me.
I walked out knowing something important about how I needed to participate in my own care.
I needed to speak up.
Hope for Today
You may walk into your first chemotherapy appointment feeling like you are entering a world where everyone else knows the rules.
The nurses know the medications.
The pharmacist knows how they are prepared.
The doctors know the treatment plan.
The staff know what happens next.
You may feel like the only person who does not know what is supposed to happen.
That is okay.
You are allowed to be new.
You are allowed to ask questions.
You are allowed to say that you are afraid.
And you are allowed to say:
“Something doesn't feel right.”
You do not need to know whether it is serious.
You do not need to know whether it is an allergy.
You do not need to know whether it is a side effect.
Tell the nurse.
It might be nothing.
It might be something.
Let the people trained to recognize the difference help you.
My first chemotherapy infusion reaction taught me that speaking up is not being difficult.
It is part of taking care of yourself.
And sometimes, saying something when you are not sure can be one of the most important things you do.
Frequently Asked Questions
What is a chemotherapy infusion reaction?
An infusion reaction is a reaction that can occur while or after certain cancer treatments are given through an IV. Symptoms can range from mild to severe and may include itching, rash, chills, dizziness, coughing, chest discomfort, or difficulty breathing.
Can an infusion reaction happen during the first chemotherapy treatment?
Yes. Infusion reactions can occur during a first treatment, although they can also happen with later treatments. The risk varies depending on the medication and the individual patient.
Can you have an infusion reaction if you have never had a drug allergy?
Yes. A previous drug allergy is not required for an infusion reaction to occur.
What should I do if something feels wrong during chemotherapy?
Tell your nurse immediately. You do not need to know whether the symptom is a side effect, anxiety, an infusion reaction, or something else. The healthcare team can assess you.
What symptoms should I report during a chemotherapy infusion?
Report symptoms such as difficulty breathing, coughing, throat or chest tightness, rash, hives, itching, flushing, chills, dizziness, nausea, or any sudden unusual change.
Will chemotherapy automatically be stopped if I have a reaction?
Not necessarily. The medical team will determine what to do based on the type and severity of the reaction. Treatment may be paused, changed, slowed, or sometimes restarted with additional precautions.
Can a pretreatment medication cause a reaction?
Reactions can occur with medications given before or during cancer treatment. Pretreatment medications are sometimes used to help reduce the risk of certain reactions, but they do not eliminate the possibility of a reaction.
Should I be embarrassed about telling the nurse something feels wrong?
No. Your cancer care team needs to know about new or unusual symptoms so they can determine whether you need treatment. Speaking up is part of participating in your own care.
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References
American Cancer Society. "Infusion or Immune Reactions." www.cancer.org/cancer/side-effects/infusion-immune-reactions.html
American Cancer Society. "What to Expect on Your First Day of Chemo." www.cancer.org/cancer/latest-news/what-to-expect-on-your-first-day-of-chemo.html
American Cancer Society. "Chemo Infusions or Injections." www.cancer.org/cancer/treatment-types/chemotherapy/getting-chemotherapy.html
National Cancer Institute. "Side Effects of Cancer Treatment." www.cancer.gov/about-cancer/treatment/side-effects
National Cancer Institute. "Chemotherapy and You: Support for People With Cancer." www.cancer.gov/publications/patient-education/chemo-and-you
National Cancer Institute. "Chemotherapy to Treat Cancer." www.cancer.gov/about-cancer/treatment/types/chemotherapy
About the Author:
Deborah Ann Martin is the founder of Surviving Life Lessons, a published author, poet, speaker, and trainer with over 20 years of management experience across multiple industries. An MBA graduate, U.S. veteran, single mother, and rare cancer survivor, Deborah brings both professional expertise and lived experience to her writing on resilience, leadership, personal growth, and overcoming adversity. Her mission is to empower others with practical wisdom and real-life insight to navigate life’s challenges with strength and purpose.
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