On Monday, I had my appointment with my oncologist to get an update on how I was doing, run a few blood panels, determine what to do about iBrance, and get my Faslodex injections.
All in all, I have been doing OK over the last month. I didn’t feel better until last week because it took a while for the iBrance to leave my system. I have had ups and downs emotionally because, quite simply, it is hard to deal with having stage 4 cancer. Some days I am upbeat and optimistic, and on other days, I am very depressed and overwhelmed. At this point, I am about 50/50 with those extremes, but I am hoping that I will start to have more good days than bad once my body has adjusted to the medications.
I was very shocked by my blood panel results because of the drastic changes that took place in only one month. My White Blood Cell count went up quite a bit from 2.6 in April to 5.9 on Monday. My ANC was of huge concern in April at .8, but on Monday, it was 3.5. My Red Blood Cell count was still low on Monday, but that was not a surprise because I am fatigued most of the time, no matter how much rest and sleep I get. It amazes me how much the iBrance damaged my body in only one round of medication, 21 days, and how quickly my body repaired itself in the last month while I was off of it.
My oncologist decided to put me back on iBrance but at 100mg, not 125mg. It is clear that the 125mg dose was too much for my body to deal with after seeing the huge changes in my blood in only one month. I should also say here that the first blood panels that were done in March when my treatment started were completely normal for the first time in three years, so this really was a significant change caused by the iBrance 125mg dose. 80% of stage 4 cancer patients are not able to take the 125mg dose, so I am not alone when it comes to having these issues, and I have been assured that studies have found that there is little to no difference in the effectiveness of the medication between 125mg and 100mg. Many of my oncologist patients have been on iBrance and Faslodex for years and have been doing well at stage 4. So on Monday, I started my next round of iBrance for the next 21 days. I have all of the medication I need should I start dealing with side effects again, but as of today, day three, I am doing fine, just dealing with a slight headache.
The longest part of my appointment was getting my Faslodex injections. The process takes a while because they have to order the medicine from the pharmacy, which is right there in my oncologist’s office, and then they warm up the medication to thin it out so it can be injected. I know it sounds terrible, and honestly, it is. I hate getting shots of any kind, but these are worse because they are given in my butt muscle, one on each side. On Monday, I was in quite a bit of pain once I started walking to my car, so once I got in, I sat there for a few moments to gather myself before driving home. I continued to hurt as the evening wore on, so I took a few extra-strength acetaminophen, which thankfully gave me the relief I needed.
My next appointment with my oncologist is scheduled for June 20th. I am fully in my monthly schedule now, so the only change from how my appointment went this month will be when I have my PET scan done. Because I had to take this past month off from iBrance, I will not have my next PET scan until July. I wish it were sooner, but I have to take iBrance for three months before getting the scan so we can see what progress the iBrance has made on shrinking my tumors.
I want to say a huge “thank you” to my family and friends that have been taking the time to contact me and ask me how I am doing. It really helps me, especially on my bad days, to be reminded that more people care about me than I realize. Bless you, and thank you for continuing to support me through this difficult time! 💕
I had an appointment with my oncologist on Monday to run my blood panels, talk about my side effects and get my third round of Faslodex injections. I spoke with the PA first about the medications I had picked up at the pharmacy over the last week for nausea and heartburn. I assured her that both were working great, so I was finally getting some relief.
My oncologist came into the exam room and handed me my blood panel results, and it was not what I expected. I knew that certain levels would be off but for them to be where they are after only three weeks on iBrance was a shock. My white and red blood cell counts are low, not dangerously low, but lower than we would like, and my ANC is low. ANC, Absolute Neutrophil Count, is the “infection-fighting” count. My count is .8, and the low end of normal is 1.25, so I am at high risk for infection. I need to stay away from crowds, busy restaurants, and people who have a cold or the flu because I could end up in the hospital with an infection and become severely ill.
After taking in the initial shock of this news, my doctor said he was very concerned, so he told me to stop taking iBrance for the next month. The break in taking the medication should give my system a chance to get back to normal levels. I had already received this next round of drugs from Pfizer because I was scheduled to start back on it after a week off a few days ago on Monday. We did discuss dropping my dose from 125mg to 100mg, but we will only do that if my bloodwork doesn’t improve. So, for now, he told me to hold on to the meds, so I will have them to take again starting on May 23rd.
Once I was done discussing everything with my doctor, I went back to the infusion room to get my Faslodex injections. Have I said how much I hate injections? I absolutely hate injections, but that is the only way this particular drug is administered, so I don’t have a choice. It seems that each time I have the injections, I have different side effects from them. Generally, I deal with headaches, bone pain in my hips, and, as with this last time, pain from the medicine itself. I have a small area on the left side near the injection site that is causing me some pain, but it has improved each day. Some good news is that I am done with the initial three doses, so now I will have the injections monthly instead of every two weeks.
During my next appointment on May 23rd, I will see my oncologist, have my blood panels run, and get my Faslodex injections. This will be my regular schedule moving forward every month for an indefinite period of time.
Chemo brain is a condition that many cancer patients deal with during and often after treatment. Not only can chemo treatments cause this condition, but also radiation, surgery, and immunotherapy. Being a cancer patient that has gone through 16 chemo treatments, 25 radiation treatments, and 5 surgeries, all within about 22 months, I can absolutely say that in my case, all of these factors combined took a toll on my physical and mental health as well as my memory and my ability to think clearly. My last surgery was one year ago, and I still have memory issues, but I have learned how to live with it by making a few changes in how I organize my life. This subject is something that I have been reluctant to write about, but now that my cancer has returned, I feel that it is time to post an entry about my experience so I will do that soon.
by Stephen Ornes
Many cancer patients have problems with memory or thinking that can linger for years after treatment. The cause is a mystery, but new tactics are helping many people cope with its effects.
BEFORE MEGAN-CLAIRE CHASEreceived her first round of chemotherapy in October 2015, her oncologist told her that side effects of cancer treatment could include some memory loss. “They said, ‘You might get a little forgetful. It will probably be minimal. Don’t freak out,’” she says. Chase, who was single, 39, and working in radio advertising in Atlanta, didn’t think much about it at the time. She was more concerned with treating the tumor and managing other unwelcome complications that cancer introduced to her life.
Chase had already seen her routines upended. A month earlier, she had discovered a large mass in her left breast and unusual bruises nearby. A diagnostic mammogram and biopsy led to a diagnosis of stage IIA invasive lobular breast carcinoma, which originates in the milk glands of the breast and invades nearby tissue before spreading to lymph nodes. Over the next few months, she would undergo 16 treatments with chemotherapy and 33 with radiation. During that time, she noticed a diminishing ability to think, reason and remember things.
She first noticed a problem with memory after her second round of chemo, when she was already feeling nauseated and losing her hair. She had gone to a store to pick up groceries. When she arrived home, she reached to take her purse from the car—only to find it wasn’t there. She stood, completely astonished, for a few seconds. Then she panicked and raced back to the store parking lot, where she found the purse untouched in the shopping cart.
“That was my first moment of dealing with chemo brain,” Chase says. She hadn’t simply forgotten the purse; this experience was something more than forgetting. “I literally had no memory of it. It’s not like I got stressed and forgot and remembered. It was just gone, like a void. It’s deeper than forgetting.” She suspects the only reason she realized the purse was gone was because she physically reached for it and had nothing to grab, not because she remembered leaving it behind.
The bedeviling, exasperating phenomenon that Chase describes goes by many names. Chemo brain. Brain fog. Mental fog. Chemo fog. Researchers who study it and doctors who see it in their patients call it cancer-related cognitive impairment, or CRCI. (Less often, it’s labeled cancer-related neurocognitive dysfunction, or CRND.)
Up to three-quarters of people treated for cancer experience cognitive problems that can be described as CRCI. Symptoms include forgetting words, names and dates. Some patients report being unable to follow conversations or control their emotions. Once-avid readers find themselves unable to maintain focus to the end of a chapter. “If they do get through it, it may be hard to remember what they just read,” says Natalie Kelly, a neuropsychologist at City of Hope Comprehensive Cancer Center in Duarte, California, who works with patients to identify problems with CRCI and map out coping strategies. Chase says that soon after her scare at the store, she became much less efficient at multitasking, which was a critical part of her job. She began to doubt herself.
For more than a third of people treated for cancer, CRCI symptoms persist for months or even years after treatment, in varying degrees of severity. In some cases, says Kelly, the cognitive troubles may subside, but stress can exacerbate symptoms. Serious symptoms are most often associated with chemotherapy, but chemo isn’t the only culprit. Patients who undergo radiation, surgery or immunotherapy have similarly reported cognitive difficulties.
CRCI poses a formidable puzzle. It has no formal diagnosis or treatments approved by the Food and Drug Administration (FDA). Researchers don’t yet know which patients are most vulnerable to CRCI, or why cancer treatment triggers CRCI at all. “It’s a complex problem,” says neuroscientist and cancer biologist James Bibb at the University of Alabama at Birmingham Heersink School of Medicine and O’Neal Comprehensive Cancer Center. “Every cancer is different, every patient is different, and every treatment is different.” Not surprisingly, every experience with CRCI is also different.
Yet there are recent signs of progress in understanding and treating the condition. “There’s a noticeable interest in what we can do to limit the neurological effects that some patients experience,” says Bibb. Researchers began to seriously study CRCI starting in the 1990s, says clinical neuropsychologist Nicolette Gabel at University of Michigan Health in Ann Arbor. The past two decades have brought increased attention to CRCI, not only among patients who share stories of lost keys and missing words, but also among clinicians and researchers looking for its biological causes and developing successful coping strategies.
“It’s not an uncommon problem,” Kelly says, adding that adopting lifestyle modifications—especially with the help of a trained cancer rehabilitation specialist—may compensate for the daunting mental challenges posed by CRCI.
Living Longer, Facing CRCI
Bibb says the increased attention on CRCI is a byproduct of significant progress in treating cancer and keeping people alive longer. The overall five-year survival rate for people diagnosed with cancer in 1980 was about 50%, according to data from the National Cancer Institute. By 2017, that overall rate had climbed to nearly 68%. Experts usually attribute the rise to early detection, improved treatment and smoking cessation. They also caution that the overall statistic smooths over important details. Survival rates are lower in Black populations and vary by cancer site. Dismal pancreatic cancer survival rates have barely budged in 50 years, while prostate cancer’s five-year survival rate is now close to 100%, for example.
What’s clear is that people are living longer with cancer. As a result, they are more likely to grapple with long-term effects of the disease and its treatment, including CRCI. “Cancer itself used to be the main issue, but now survivability and survivorship have become equally important,” says Bibb.
For Chase, the missing purse was the first of many instances she chalks up to CRCI. During chemotherapy and then radiation treatment, the problems snowballed. “I couldn’t remember how to do certain tasks at work that used to be second nature,” she says. “I had an inability to participate in conversations with people at work, and I wouldn’t remember full conversations with my mother. She would say, ‘You told me that 15 minutes ago.’” The mounting uncertainty led her to leave her job in radio advertising and find less stressful work.
Chase’s experiences also drove her to develop coping strategies, sometimes with the help of her therapist, who was an oncology social worker. “Any cancer patient needs a therapist,” she says. “Mine has the knowledge of what a cancer patient goes through and can provide guidance to help.” She also started writing a blog, called Life on the Cancer Train, to keep a record of her experiences and used social media to reach out to other people with CRCI to collect anecdotes for her writing. A common thread emerged among all the stories she heard: Everyone with CRCI suffered acutely from self-doubt, she says. How can a person trust their own mind when it keeps failing them?
Chase began to write down everything she needed to get done and set reminders on her phone. She also read long magazine articles out loud to herself. “It forced me to read words and concentrate,” she says. At first, she could only manage a few minutes of reading aloud, but over time her attention span grew. “It really helped strengthen my short-term memory.” Eventually, years after her treatment regimen had ended, she reached a point where she no longer had to write everything down. (“I still write down the super-important stuff.”)
Chase says she received little guidance from her health care providers about how to navigate the post-treatment fog. “It’s wonderful that they kept me alive,” she says. “But after, I felt like they just threw me out in the middle of the ocean with no life jacket.”
Gabel, at University of Michigan Health, says Chase’s experience is common. She recently led an analysis of existing studies and surveys focused on CRCI, and the group published its findings in Current Physical Medicine and Rehabilitation Reports in July 2021. The analysis revealed that many different symptoms that patients notice can be measured, and that these symptoms are often noticed as treatment progresses. The analysis also reported that patients can become distressed when they notice changes in the way they think, reason or behave.
“Educating patients about the risk for CRCI needs to be more of a strategic implementation at the beginning of cancer care,” says Kelly at City of Hope. “With more survivors, which is wonderful, there are more people living with the effects of treatment who want to understand how to live their best lives and move forward with their goals, even in the midst of experiencing cognitive issues.”
Many hospitals and cancer centers offer resources. These may include consultation with a trained neuropsychologist after treatment ends. The consultation usually begins with an evidence-based evaluation that can help guide the creation of an individualized treatment plan. The evaluation helps identify and measure the severity of cognitive impairment, including learning and memory tasks.
“We identify any factors that may contribute to CRCI,” says Gabel. “What makes it harder for patients? Insomnia, pain, other factors can get in the way.”
The resulting plan, based on evidence from existing studies, may include cognitive rehabilitation, in which patients work with trained therapists on interventions that can help create compensatory strategies to improve mental skills. (The same interventions are often used to help people with traumatic brain injury, stroke or other neurological impairments.) It may also include recommendations for lifestyle adjustments that could help reduce stress, which is known to trigger the effects of CRCI.
Exercise may help. Studies have shown that people with cancer who exercise regularly report less fatigue. More recent investigations suggest that exercise may help ease some CRCI symptoms, though more research is needed. Other studies have suggested improvements from cognitive behavioral therapy or from mindfulness-based activities. (See “Strategies to Manage Cognitive Impairment” below.)
Although no medications have been approved by the FDA to treat CRCI, recent studies have investigated whether psychostimulants (like methylphenidate) or anti-dementia drugs may offset the symptoms. These studies have reported promising results, but they are limited by small numbers of participants and inconsistent study parameters. They don’t reveal, for example, which patients are most likely to benefit from treatment. More evidence is needed before clinicians can recommend specific drug treatments, says Kelly.
Strategies to Manage Cognitive Impairment
Cancer-related cognitive impairment has no definitive diagnosis or treatments, but patients can use techniques to better cope with the condition.
According to the National Cancer Institute, nearly 17 million people in the United States are living with cancer or have been diagnosed in the past. Three-quarters of them—almost 12.8 million—likely experience problems with memory or thinking resulting from treatment. Sometimes the symptoms resolve, sometimes they persist, and sometimes they worsen in times of stress.
The condition, called cancer-related cognitive impairment (CRCI), has no definitive diagnosis and no treatments approved by the Food and Drug Administration, but there are strategies to better cope with its effects. These include:
Writing. Note everything to help remember important tasks.
Reading. One patient who received extensive chemotherapy and radiation regained a longer attention span by reading out loud.
Asking for help. Your oncologist at the hospital may refer you to a neuropsychologist, who can assess the severity of CRCI and recommend coping strategies.
Moving. Establish a regular regimen of physical activity.
Talking. A trained mental health provider such as a psycho-oncologist can help you process the emotional tumult brought on by CRCI.
Despite decades of studying CRCI, much work needs to be done, says Gabel. She and other researchers are now working to improve neurological assessments. “One of the difficulties has been to understand the correlation between what patients are noticing and what we are measuring,” she says. “Patients report much more severe symptoms than what we can capture on assessments.”
Then, there is the mystery of CRCI’s neurological origins. Although lab and animal studies suggest that chemotherapy alters cells in the brain and central nervous system, understanding of the exact biological process is incomplete, which makes it hard to treat.
There are some hints to what’s going on, though. Some researchers are looking for answers in the microbiome—the collection of bacteria, good and bad, found in the body. A January 2022 study in the European Journal of Cancer reported that treatment with probiotics prevented CRCI in patients with breast cancer.
Bibb says the development of CRCI likely spans many systems within the body, but his work focuses on the mechanistic effects in the brain and the possible influences of the immune system as well. “I think that we are altering brain function directly through potential neurotoxic effects of the drugs but also indirectly through the effects of chemotherapy on the immune system,” he says.
He points to a study on mice, published in January 2019 in Cell, in which researchers from Stanford University found that treatment with methotrexate, a chemotherapy used to treat many kinds of cancer, changed important immune cells in the brain called microglia, which in turn disrupted other processes in the brain. Microglia play a variety of roles, including breaking down dead or dying cells.
More recently, in August 2021, Bibb and his colleagues published a study in ACS Chemical Neuroscience that identified regions of the brain and biological processes that were disrupted when mice were treated with two common chemotherapies, cisplatin and gemcitabine. Those disruptions, Bibb says, correspond to changes in brain signaling and inflammation in the brain. He cautions that the study was done in mice, and findings in mice don’t always translate to benefits for people, but it does suggest a way forward in understanding the consequences of chemotherapy for the brain.
Bibb believes that research will lead to a treatment for CRCI. “I absolutely see it as targetable,” he says. “We may be able to provide drugs that can prevent those effects or add a therapy that compensates for the indirect causes.”
Chase says that in the six years since she ended chemotherapy, her symptoms have partially subsided, though “I’ll never be at 100%.” One thing she learned, however, was the value of identifying her passions and interests, and finding ways to cultivate them. For her, that meant trying to get back on the stage. “My love of theater has always been there.”
In 2021, she enrolled in a six-week class at Alliance Theater in Atlanta. The class culminated in a performance of a two-person scene before an audience. To her surprise, she found that she could remember previous experiences in dramatic performances—where to move during a scene and how to memorize lines, for example. The night went off without a hitch. (Well, almost: At the last minute, Chase had to change roles, but the audience was none the wiser.)
“It was such a personal victory,” she says. “I didn’t know how much time and therapy and confidence it would take to believe in myself again. At the end of the day, all of those side effects, and cancer, can’t take away the essence of you.”
Stephen Ornes, a contributing writer to Cancer Today, lives in Nashville, Tennessee.
A quick disclaimer, please remember that the subject matter in this blog post is specific to my experience while taking iBrance for Stage 4 Metastatic Breast Cancer. If you are about to start or take the same medication, your experience may differ from mine, so please keep that in mind.
On days thirteen thru eighteen, I continued to have issues with nausea; it was not as severe or as frequent but still annoying. I called the nurse’s line at my oncologist’s office, and my doctor prescribed an anti-nausea medicine for me since the one I have is three years old and has expired. It is comforting to know that I have a current drug that I can take should I need it.
On days nineteen through twenty-one, the nausea, for the most part, had stopped, but my heartburn was getting worse. Every night after dinner, I would get heartburn from mild to severe, and it didn’t seem to matter what I ate. I had the same scenario as I did with the medicine for nausea; my heartburn medicine was expired. I rarely ever have heartburn, so I know that just like the nausea, it is a side effect of the iBrance.
Today is day three of my seven days off of iBrance, and I feel much better. I still have slight nausea, but it has stopped for the most part. My heartburn continued, so I called the nurse’s line yesterday, and my doctor prescribed a new med that I will be taking every day. I took it last night before dinner, and I was very pleased to finally not have that dreaded pain in my chest after eating.
On Monday next week, I am starting back on iBrance, and I have an appointment to see my oncologist, have my bloodwork done, and get my Faslodex injections. I am curious to see where my white blood cell count is now that I have completed my first twenty-one days on iBrance. I know it could be potentially low, but I hope it won’t be too low because it puts me at risk of having issues with a weakened immune system.
I will update again after my appointment next week. Thank you for being here! 🙂
A quick disclaimer, please remember that the subject matter in this blog post is specific to my experience while taking iBrance for Stage 4 Metastatic Breast Cancer. If you are about to start or take the same medication, your experience may differ from mine, so please keep that in mind.
People using this medication may have serious side effects. However, you have been prescribed this drug because your doctor has judged that the benefit to you is greater than the risk of side effects. Careful monitoring by your doctor may decrease your risk.
Tell your doctor right away if you have any serious side effects, including: signs of anemia (such as unusual tiredness, pale skin, fast heartbeat), easy bruising/bleeding (such as nosebleed), signs of lung problems (such as chest pain, shortness of breath).
This medication may lower your ability to fight infections. This may make you more likely to get a serious infection or make any infection you have worse. Tell your doctor right away if you have any signs of infection (such as fever, chills, persistent sore throat, cough).
A very serious allergic reaction to this drug is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.
My first seven days, March 28th – April 3rd, on iBrance were fine; no significant changes in how I felt. Unfortunately, I am not a stranger to chemo treatments, so I knew that it was a matter of time before I began to deal with possible side effects as the medication builds up in my body.
On day 8, I started having waves of nausea all day with diarrhea after every meal, and that evening, I started having abdominal pain and cold sweats while in the bathroom. I made sure to keep my water intake up as suggested by my pharmacist, which is 2 to 3 quarts a day, but it didn’t help much.
Day 9 was about the same but with less abdominal pain. I began to get scared to eat because I would feel better initially, only to feel worse about 20 minutes after eating. I started to have other side effects combined with those I already had, like tingling in my hand and losing my appetite.
On day 10, I woke up with diarrhea, but it only happened once, and then I had the opposite problem the rest of the day, constipation. I am still nauseous on and off all day, and my appetite is non-existent, but I hope that I will improve in the coming days as my system continues to adjust to the medication. I am eating, but sometimes I need to force myself because I know I need to eat to stay healthy. I am losing weight but not so much that I am concerned since I am still about 20 lbs overweight.
On days 11 and 12, I have felt much better. The tingling in my hand has stopped, but I am still dealing with nausea on and off; it is nowhere near as severe as the past three days, so that is an improvement. My appetite is slightly better, so eating hasn’t been as much of a struggle. Hopefully, I am turning a corner, and next week, my third week on the drug will be much easier. I am worried about having a week off, starting on the 18th and then starting back up again, but I am trying to remain optimistic that it will be OK.
My upcoming appointment at my oncologist’s office is Monday, when I go in for round two of my Faslodex injections. I am not scheduled to see him so I will discuss the side effects with my nurse, and if she feels it’s necessary, I can ask to talk to my oncologist. Overall, I am doing OK, considering that I am dealing with more side effects with this medication than I ever did while going through infusion chemotherapy.
I went to see my oncologist today. First, some good news, my blood panel was completely normal today, with no low or high levels on anything! Today was the first time I have had my blood look this healthy in 3 years. Of course, now, that will change somewhat with the meds that I started today. We discussed both meds that I started today, and I asked him a few questions that we thought of after my last visit. So, this is what we discussed and the questions he answered.
The Faslodex is given in two injections because it is a lot of medicine, 500 mg. The drug is very thick, so they must warm it before injecting it. It is administered intramuscularly into the buttocks (gluteal area) slowly (1 -2 minutes per injection) as two 5 mL injections, one in each buttock, on Days 1, 15, 29, and once monthly. Today was day one, so my next three appointments are on April 11th, April 25th, and May 23rd.
My dose of iBrance is a 125 mg capsule taken orally once daily for 21 consecutive days, followed by 7 days off treatment to comprise a complete cycle of 28 days. It is highly important that my doctor keeps an eye on my white blood cell count because this medication can drop my levels to too low, just like infusion chemo did. If my white blood cell count drops too much, he will lower my dose to 100 mg or 75 mg if necessary.
I will have a PET scan every three months to check the progress of the meds on my tumors. If the meds shrink the tumors, we will keep my meds the same. If the tumors are growing, we will change my meds and try something else. The goal is for the tumors to disappear or shrink and then stay that way; at that point, my cancer will be controlled, and I will be in remission.
My questions: How long will I be on these meds? I will be on both meds as long as they are working, indefinitely.
Do I need to do anything special while on these meds? I need to drink 2 to 3 quarts of water every day, get plenty of rest, stay away from large crowds or people with colds because I will be at risk of infection, wash my hands often, and something new this time; I can’t eat grapefruit or drink grapefruit juice.
There are, of course, side effects, as with any medication. So far, I have had a headache tonight, but nothing that Tylenol couldn’t knock out. I had some discomfort from the injections for a few hours after getting them, but that has stopped.
I will let you know how I am doing as I go through my next few appointments.