Extending Life with Immunotherapy: Advances in Treating Triple-Negative Breast Cancer

The August 9, 2022 edition of the National Cancer Institute’s Cancer Currents blog announced the findings of the clinical trial KEYNOTE-355 that examined the benefits of using the immunotherapy drug pembrolizumab (Keytruda) in conjunction with chemotherapy in treating advanced triple-negative breast cancer (TNBC).

The results, published in the New England Journal of Medicine (Cortes et al., 2022), revealed that pembrolizumab in conjunction with chemotherapy was effective in extending the lives of TNBC patients with advanced disease as compared to chemotherapy alone, and the difference was striking. Those who received the drug lived a median of 23 months compared to 16.1 months for the chemo-only group.

Sources: Cancer.gov, Cancer Currents blog

Of course, cancer differs among patients and not all TNBC tumors are the same. The life-prolonging benefits of pembrolizumab were limited to those patients with PD-L1 scores of at least 10; PD-L1 is an immune checkpoint protein, and the score denotes the level of this protein found in cancer tumor cells.

And it’s important to note that while the drug extended life expectancy, it was not yet a cure, which is what we’re all still waiting for.

So there are asterisks associated with these findings, which might be disappointing for those with advanced cancers of this type. But the researchers stressed that this is a very promising outcome.

Consider the advances that have been made. TNBC used to be treated with untargeted therapies, kind of like throwing everything you’ve got at the tumor and hoping that something “sticks”. On the other hand, pembrolizumab is a targeted therapy for this specific subset of TNBC, and that makes a huge difference.

There has been a push to address the complexities of TNBC and large strides have been made in understanding what makes it tick. New therapies are being approved and they are making researches optimistic about eventually being able to cure the disease.

As an example, in April 2021, the FDA approved the use of sacituzumab govitecan (Trodelvy) for the treatment of certain types of TNBC (after conditional approval had been granted in April 2020). As noted in the May 12, 2021 edition of the Cancer Currents blog, sacituzumab is comprised of an “antibody coupled to a more potent form of the chemotherapy drug irinotecan (Camptosar). The antibody binds to breast cancer cells, delivering the chemotherapy directly to those cells.”

There’s good news for some patients with advanced triple-negative breast cancer.

Notably, patients receiving sacituzumab lived a median of 11.8 months longer compared to 6.9 months for those patients receiving the chemotherapy alone. Positive results were also obtained for patients with brain metastases, where the cancer has spread to the brain, who tend to have worse outcomes when treated only with chemotherapy.

There is still so much more to learn. Cancer is a puzzle and researchers have known for some time that the pieces do not yet fit together cleanly. But each one of these advances brings us more effective treatments for TNBC, addressing more specific targets on the tumors. Lifespans are increasing and for many, cancer is taking the form of a chronic disease, not a death sentence.

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REFERENCES

Cancer Currents Blogs

Sacituzumab Govitecan Approved for Metastatic Triple-Negative Breast Cancer, Cancer Currents, May 28, 2020: https://www.cancer.gov/news-events/cancer-currents-blog/2020/fda-sacituzumab-govitecan-triple-negative-breast-cancer

Sacituzumab Govitecan Earns Full Approval for Triple-Negative Breast Cancer, Cancer Currents, May 12, 2021: https://www.cancer.gov/news-events/cancer-currents-blog/2021/sacituzumab-govitecan-tnbc-regular-approval

Pembrolizumab Improves Survival in Advanced Triple-Negative Breast Cancer, Cancer Currents, August 9, 2022: https://www.cancer.gov/news-events/cancer-currents-blog/2022/pembrolizumab-triple-negative-breast-cancer-improves-survival

KEYNOTE-355 Clinical Trial
(as of this posting, the full article is not yet available to non-subscribers)

Cortes et al. (2022) Pembrolizumab plus Chemotherapy in Advanced Triple-Negative Breast Cancer. New Engl J Med, 387, 217-226. 10.1056/NEJMoa2202809

A Reflection on “Chemo Fatigue”

After posting videos from my final infusion where I described chemo fatigue, I felt it important to follow up with a debriefing.

I was not in a good headspace during that time. I had started a mindfulness meditation practice five months earlier but had too little experience and not enough training for it to significantly affect my mindset, 50+ years in the making.

When I write a cancer-related post, I straddle a line. On the one hand, I want to provide an admittedly subjective and honest account of what I experienced during treatment; on the other hand, understanding that we all come from different backgrounds and may have vastly different perceptions of what cancer means to us, I don’t want to color the reader’s view of what their experience might be like.

Cancer revealed a lot more about myself than I expected to find.

There have been times that I held back on projecting too much of my own personal state. I waited five years to post my videos on Chemo Fatigue because I didn’t know whether it was appropriate to do so. They remain some of the rawest and truest representations of the despair that I felt at the time. I was still very angry and frustrated, feeling what I recognize now as a deep sense of betrayal.

It was mindfulness meditation along with deep reflection, expert counseling and simply the passage of time that ended up bringing me out of the anger. That process took a lot longer than I ever expected. It also showed me aspects of my personality that I hadn’t understood before because I’d never had to confront them.

So while I still would never say that cancer had a positive effect on me, just as with many heavy life experiences, it took me to a new level of maturity and self-awareness. I am very thankful to be on this side of treatment, although I’m acutely aware that everything may change with the next scan. That makes every moment all the more precious.

Chemo Fatigue: What Is It Like? [video]

[IMPORTANT: Please be aware that at the time the videos were filmed, I was in a very negative headspace. My experience should not be considered an example of a “typical” experience because with cancer treatment, there is no such thing. Just as cancer is a disease specific to an individual, so is the treatment and, as a result, one’s response to it. If you are interested in viewing the below videos, please keep all the above in mind.]

I’ve posted quite of few photos of my cancer journey. You’d think I wouldn’t have any more pics left, but–surprise–I do!

I made some important (to me) videos after my sixth and final infusion, but to date I’ve hesitated to post them. In part, this is because I’ve tried to remain anonymous in this blog, but in the clips, you get to see my face. And it’s not a pretty sight.

I didn’t feel human.

I was the weakest that I’d been my entire adult life. My body was feeling the strain of multiple infusions of chemotherapy, I didn’t recognize myself in the mirror and my voice didn’t sound like my own. I was so sick and tired of this part of the treatment and wanted it to be DONE.

At this point, I wasn’t suffering that entire cascade of side effects that I’d experienced after my first chemo infusion, and I’d learned to better deal with what I did experience, and even what to do to avoid some of the side effects.

However, the fatigue I felt was far beyond what I imagined it would be. And it was coupled with constant background nausea, like a slow burn in my gut. This was a result of losing the rapidly-dividing cells that lined my intestinal tract; they were felled by the chemotherapy, collateral damage as the medicine killed off potential cancer cells.

Strangely, there were also times when I was actually quite hungry, but literally too tired to try to get something to eat. Even calling for a member of my family to bring me food required too much effort. Speaking took a lot of energy.

The final infusion’s side effects lasted the longest. A full week after my infusion I was still very unsteady and barely made it to work for a few hours.

It’s worth noting that this was pre-pandemic and I wasn’t properly set up for working from home. Were I experiencing chemo treatment now, I’d be able to get more work done…likely to my detriment, unfortunately, because I really needed that time away.

It took five years for me to decide that it was time to post these videos. Apologies if they get a little intense:

August 13, 2017 – Cancer fatigue, part 1
August 13, 2017 – Cancer fatigue, part 2

Victims of Our Own Success: Premature Aging in Cancer Patients and What You Can Do About It

So this isn’t the kind of news you want to see. But there’s still hope…

A scientific journal article from 2017 (Cupit-Link et al., 2017, ESMO Open) describes the toll that cancer treatments can take on the patients subjected to them.

After being told you have cancer and deciding to proceed with the treatments that will offer you the best chance of survival…it’s disheartening to learn that many of those same treatments can accelerate aging, causing damage to your DNA, heart disease, hearing loss, cataracts, liver and kidney diseases, brittle bones, lowered immune response and other cancers (!) among other issues, depending on the type of cancer and treatment (see WebMD article).

The treatments that can save our lives from cancer may hasten our demise from age-related factors.

This is a problem resulting, ironically, from the success of treatments and extended lifespan of cancer survivors. Back when cancer was deadly with a low survival rate, no one was too concerned about the state in which survivors were left in; simply surviving the cancer was enough. Now that people are beating their cancers at greater rates, quality of life has become a much bigger issue.

While the most striking detriments are seen in childhood cancer survivors, accelerated aging occurs in most former cancer patients.

Doctors and researchers are taking note. At the time of this scientific article’s publishing in Dec 2017, there was already discussion on how to “de-escalate” cancer treatments as a way to decrease the amount of cellular damage to patients.

On a personal level, I chose an effective drug for my HER2+ breast cancer (Herceptin) over a more effective drug (Perjeta) that carried a risk of greater cardiotoxicity. I made that decision because although I was terrified of cancer, I was also afraid of what lasting effects the drug would have on me once the treatments were over.

Cancer treatments are strong but healthy living can help mitigate their negative effects.

But even if you didn’t have the opportunity to make such a choice, there’s still something that you can do. The authors of that 2017 paper noted that cancer survivors can take back some control over their health by adopting or continuing those healthy lifestyle habits that should sound familiar by now: not smoking, limiting alcohol, exercising regularly and eating a healthful diet.

To that, I would also add, managing your stress levels, the importance of which has been demonstrated on a cellular level, and getting optimal amounts of sleep.

Improving longevity is a hot field for research as scientists work to determine what aspects of one’s lifestyle show the greatest promise in keeping the body young. This topic is complex and new data is coming in on a regular basis, so I won’t delve into details here, but it stands to reason that being sedentary and eating a high-sugar, high-processed diet is not going to do you any favors.

Just as cancer treatments may have a negative effect on overall health, you can win back some lost ground by making healthy, informed decisions on diet and exercise. No one wants to limit their cancer treatment options, so this is one form of insurance that you can give yourself. No matter what else happens, a healthy lifestyle will benefit your quality of life. And that is an improvement that is yours to keep.

Still Not Stinky: Chemo & Body Odor 5 Years Later

After finishing chemo for breast cancer and noticing that I had no body odor, I decided to write a post about it because the Internet was silent on the topic. Apparently, I wasn’t the only one who’d come up empty. A number of you commented that you’d noticed the same thing and similarly found no explanation.

Well, five years after my initial diagnosis, maybe 4.5 years after finishing chemo, I still can’t locate info on the Internet about this.

If I do find the odd article about cancer and body odor, it’s about the exact opposite: smelling bad as a result of the disease or certain medications. Not what I’m looking for.

Hey, Internet! Is there really no one looking into this?

It is quite weird that I can’t even find anything in the US National Institutes of Health PubMed database, so I would suspect that chemo-related loss of body odor is not on the radar of researchers. Well, it’s certainly not on my oncologist’s radar because he said he’d never heard of it and didn’t think it could be attributed to chemotherapy. Personally, I can’t imagine how it could be from anything else.

I’m going to pester him about it again during my next appointment. Usually armput odors are caused by bacteria. As an article from the Cleveland Clinic explains, odor is produced “when bacteria on the skin break down acids contained in the sweat produced by apocrine glands, which are located in the armpits, breasts, and genital-anal area. The bacteria’s waste products are what produce the smell.”

And NPR ran a story on researchers looking into what the worst bacterial offenders are, noting, “When the bacteria break down the sweat they form products called thioalcohols, which have scents comparable to sulfur, onions or meat.” The greatest culprit? Staphylococcus hominis.

So then maybe the chemo stops the production of thioalcohols? Or chemo wipes out the S. hominis living on our skin? I’m surprised that no one is researching this in the context of chemo patients, because it seems like it might have some health implications. We still don’t know all the side effects of chemo drugs and it would be useful to start a conversation about this one.

If you’re experiencing this, please tell your medical team. They might simply not be aware of what’s happening.

I’m not saying that I smell like a bouquet of flowers, but according to my husband, there’s no “sweaty pit” odor.

And you might be wondering what my current experience is, almost five years later. Even though I departed the realm of the completely-odorless about two years after completing chemo, I still have very little body odor. And it’s not like I don’t give it chances to fester since I work up a good sweat when I exercise. Note that my left armpit, which was thoroughly irradiated, exudes almost no noticible odor. My right armpit doesn’t smell very much, but sweat that gets on, say, a sports bra will start making the fabric stink the next day. (Let’s just say that I’ve been testing this out.) The skin in the armpit itself? Minimally, and that’s with no deodorant, although I do wear it anyway.

Certainly, the six weeks of radiation therapy on my left side would likely have an effect, and so it would make sense that there’s a difference in odor between both armpits.

Still, the “natural” (and unfortunately overpriced – yeesh!) deodorants do a very good job of fragrancing my armpits because they don’t have to work very hard.

So the mystery remains. I’m going to keep digging into this as it’s likely there’s a disruption of our skin microbiome involved, and given the popularity of that research (see microbiome and armpit odor info at drarmpit.com), someone may be looking into the connection between chemo and body odor in the future. Until then, I’ll just remain happy and relatively unstinky with fingers crossed that it continues.

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Many thanks to my very patient husband who played along and agreed to smell every place I pointed to. I’ll revisit the odor issue during the summer just in case…

Working Out the Brain Fog

So if you needed yet another reason to exercise before, during and after your breast cancer treatments, I’ve got one for you.

A recent study in the Journal of Clinical Oncology (Salerno et al., 2021) found that early stage (I-III) breast cancer patients who were meeting the US minimum physical activity guidelines both before and during their chemotherapy displayed better cognitive function then did those patients who did not, and the effects were apparent both at the time of chemo and also six months after its completion.

Cognitive impairment is a relatively common complaint of breast cancer survivors–and can be improved with exercise.

This follows along the lines of other things we already know about exercise and cancer, such as increased survival rates and reduced rates of recurrence. It’s not a big stretch to say that exercise (and for the purposes of this post, I’m referring to the US national guidelines) is possibly one of the best things you can do for yourself, whether you are already a cancer patient or don’t want to become one (again).

What are these guidelines?

It’s suggested that adults do (1) at least 150-300 minutes per week of moderate-intensity or 75-150 minutes per week of vigorous-intensity aerobic physical activity, or some combination of the two intensities, the more the better; and (2) strength training activity involving all the major muscle groups at least two days a week at moderate or greater intensity (see specifics at Physical Activity Guidelines for Americans, 2nd edition).

Notably, similar guidelines hold across age groups and health conditions, with some modifications, although what exactly constitutes moderate to high intensity for different people will vary according to their conditioning and abilities. Take home message: If you can’t meet the guidelines, do what you can. It will still benefit you. The worst thing you can do is nothing.

The benefits of exercise for cancer survivors have been well-documented.

While there’s been a considerable amount of research done on the benefits of exercise as a whole, we’re only now beginning to focus on cancer patients and survivors as the test subjects. And new research is being conducted on different aspects of exercise to learn what effects they might have on cognition.

I’m going to be watching for the results of two clinical studies regarding exercise and cognition of cancer survivors. Both are currently recruiting participants.

The first, being conducted by the University of California, San Diego, is entitled “I Can! Improving Cognition After Cancer” and will be a randomized trial that examines whether physical activity improves cognitive function. You can read about it here: A randomized trial of physical activity for cognitive functioning in breast cancer survivors: Rationale and study design of I Can! Improving Cognition After Cancer, funded by the National Cancer Institute. Want to learn more? Go to https://clinicaltrials.gov/ct2/show/NCT04049695.

The second, conducted by the University of Pittsburgh and entitled, “Aerobic Exercise in Improving Cognitive Function in Patients with Stage 0-IIIA Breast Cancer”, will explore the effects of aerobic exercise specifically and will involve neuroimaging and the examination of pro-inflammatory biomarkers. You can read about it here: https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCT02793921&r=1. Again this is funded by the National Cancer Institute. Interested in learning more? Go to https://clinicaltrials.gov/ct2/show/NCT02793921.

If you’re not exercising yet, the important thing is not what physical activity to choose, it’s to make the decision to begin.

If you have any interest in participating in either of these studies, contact info for the research project is available above in the posted clinical trial links.

So you might be thinking, “I can barely deal with the diagnosis…and you want me to EXERCISE???” I promise you, physical movement will only make you feel better. However, if you don’t have an established exercise routine and don’t particularly enjoy the experience, consider what you can manage.

We’re not talking about training for a marathon or a powerlifting competition. But if you can do something, ANYTHING, you will still see greater improvements in your cognition–and quite frankly, many other aspects of your physical and mental state–than if you hadn’t done any activity at all.

It is worth it and you are worth it. So lace up your shoes and give it a go.

I Still Don’t Recognize “Myself”

You know how you have a picture of yourself in your mind’s eye? The way you imagine you look?

For four years, that self didn’t mesh with reality.

I still saw the long-haired fitness freak who’d never had a surgery in her life and definitely no serious illness. The one who was remarkably healthy at 50…the one whose co-worker assumed was age 35.

This is a perfect illustration of how I felt post-diagnosis.

That reality changed in an instant. The unbelievable happened, the unexplicable knocked me off my feet. There was no transition time. I went from super-healthy and super-fit to being diagnosed with one of the most dangerous diseases in our experience.

As the saying goes, “If you don’t have your health, you don’t have anything.” My health was everything to me, and suddenly I felt as though I had nothing.

And in the cruelty that is cancer treatment, off went the hair. Now there was no mistaking that I was “sick”. So when I bumped into friends who hadn’t heard about my diagnosis and tried to explain what had happened, they all said the same thing: “I know.”

Every time I walked past a mirror, I would get a shock. And this went on. Through the months of chemo, through radiation, waiting for regrowth that seemed to take forever.

My oncologist told me to be patient, the hair would come back. It was different for everyone. But I was still scared. And acceptance was a new concept that I was not comfortable with.

Yes, I felt I bounced back the year after chemo – working out hard, with the most awesome new-growth hair that random people would stop and compliment. That year, I felt strong and full of promise. I dared to say that cancer MIGHT have been the best thing to happen to me…

But as time went on, reality moved in again and I realized that there really was no going back. And that “lift” that I had gotten after my hair started growing back and I was hitting the gym hard, well, I crashed again.

Picking up the pieces has been a process…

Endocrine therapy pushed me through menopause. My hair thinned. And most devastatingly, I lost two friends who had been diagnosed with breast cancer around the same time that I had been.

I couldn’t celebrate that. And I fought it for months and months.

Four years later, I’m comfortable with calling myself a cancer survivor. But you know what? I still get a little jolt when I walk past the mirror. It’s still not the “me” that I expect to see. After several years of endocrine therapy, I do not look like I used to. My body doesn’t feel like it used to.

So I stopped beating myself up about it. I need more rest time between workouts. I get tired earlier in the evening. Yeah, I forget things. A lot. So I write more notes and declare my intentions out loud (“I’m going to have to take the next exit…”) so I remember what I’m doing.

I still don’t recognize “myself” in the mirror, but that is a previous “self” who was the right “self” for that time. The current “self” is wiser and more gentle with her body and her spirit.

And I do recognize her.

When Is a “Chemo Port” Not a Chemo Port?

When is a “chemo port” not a chemo port? When it’s a heart rate monitor. Except that my emotional brain can’t tell the difference.

For anyone unfamiliar with cancer chemotherapy, a chemo port, or subcutaneous implantable catheter, is a device implanted under the skin (usually on the chest) that is accessed during an infusion to enable easy mixing of the chemo drugs with blood within a major blood vessel. This avoids a good deal of injury to any smaller blood vessels, were you to get chemo drugs via an IV to your arm. (For more info, see this post.)

This is what I had under my skin for a year while I was undergoing chemotherapy infusions. It took some getting used to but I never reached the point where I could ignore it.

As much of a blessing as the chemo port is, having a foreign object pushing up from the chest wall under your skin can give “Alien” (as in the movie) vibes. For me personally, the implanted chemo port was more psychologically taxing than I anticipated, and as soon as all my infusions were done, which took a year, I had it taken out ASAP.

So almost three years after its removal, the chemo port is spooking me again, this time in the form of an extended Holter monitor for continuous heart rate recording, which I’ll have on for almost two weeks. It’s taped to the skin in a fancy patch that you can exercise and shower in, and supposedly you forget that you’re wearing it and go on your daily routine as normal.

But for me, it’s bringing up the spectre of chemo port, and memories of discomfort and pain I felt having that bulge stretching my skin of my chest. I chant my mantra of “it’s ON, not IN” in an effort to distinguish between the port and monitor, but the longer than it stays on, the more anxiety I feel about it.

My Holter monitor (ePatch) sits on the side opposite from where my port did, but it takes up the same amount of space in my head.

All those emotions about the lack of control over my own body, feeling so abnormal and outwardly looking “sick” (not to mention fear of death) are rushing back. The Holter monitor peeks up from the neckline of my shirt, hooks my car’s seatbelt and often seems to be in the way. I find myself moving away from other people in fear of having them knock it or hug me too tightly and cause pain, even though the monitor doesn’t deserve the same apprehension that the port did.

I’m removing the Holter patch today and sending it back for analysis, so that’ll be a big relief. But the power of this reaction is another reminder of the depth of fear that the cancer experience placed within me.

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So why am I wearing the heart rate monitor anyway? I was having little cardiac “episodes”, particularly over the last year, and this was one of the (many) reasons for discontinuing aromatase inhibitors. Mainly these were sensations of skipped or extra beats or an odd “fluttering”. I’ve already had an EKG and echocardiogram, neither of which apparently showed anything abnormal (I haven’t received a final report of my echocardiogram but had been told that the cardiologist would contact me if he found anything problematic, and it’s been a week and a half, so I’m guessing everything’s okay?).

Okay, it’s off. But it’s left its mark on me. I’m hopeful I can get rid of this impression faster than the port’s. Chant with me: “ON, not IN…”

The Holter monitor was the last step in looking for arrhythmias or similar issues. And wouldn’t you know it? The further I’ve gotten from stopping aromatase inhibitors, the fewer episodes I’ve experienced and haven’t felt anything distinct since I got the monitor. What I’m feeling is very occasional, subtle “sensations”…but these may turn out to be nothing. I’m okay with that. As a matter of fact, I’m not even worried about what the data might show.

I just want this thing off me.

Addendum to “Chemo Nails”: Healing

I can’t write about discolored and infected fingernails as a side effect of chemotherapy without throwing in some good news too. Not only did I document the sad state of my nails in photos, I kept taking pictures even after the ER visit. I wanted to see what the healing process looked like, something that can be difficult if you don’t have photographs to compare against. So what’s the good news? That which was nasty didn’t stay nasty.

(About the photos…I never intended to post these so they aren’t the greatest images, and I’m still a dork when it comes to working with WordPress, so I apologize for the weird sizing. Eventually I’ll figure it out.)

September 6, 2017: the left hand again with bruising visible on the side of the ring finger. Its nail looked like it was about to drop off, but it was actually holding on quite well, not that I was about to fiddle with it to find out. From this angle the middle finger looked black with an uncertain future. The left hand looked like it had been on the losing side of a bar flight. Nonetheless, my poor body, still recovering from the shock of chemo, was hard at work getting everything back in order.

September 6, 2017: just over a week after my ER visit, the left ring finger was normal-sized again but clearly showing the damage from the infection in the form of a significant bruise. The middle finger wasn’t looking that hot either.
September 6, 2017: in the meantime, the right hand was shaking off the chemo infusions. While it seemed like the nail beds had shrunk, the growing nails were doing well.

A week had passed since my infection had been treated (see previous post), I was still alive (a good thing!) and my nails hadn’t fallen off. My right hand, ignoring the battles of the left, was marching onward and away from chemo memories.

As I mentioned in my last post, I was wondering how much influence the vinegar and water solution that I soaked all my raw veggies in to clean them (per doctor’s orders!) had on the state of my right hand. It had spent much more time in that solution, at least several times a day, and didn’t show nearly the same amount of damage that the left hand had.

A week later, instead of nails dropping off one by one, the healing continued.

September 13, 2017: this photo offers a better view of how much the left ring finger had healed over the course of two weeks. Even after having a seriously suppressed immune system, recovery from the infection progressed remarkably quickly.
September 13, 2017: still hanging on. While the nails looked horrible, there was actually considerable improvement.
October 19, 2017: the right hand was looking almost completely normal!
October 19, 2017: a month after the photos above, healing is well on its way. I didn’t lose a single nail, the dark discoloration disappeared and everything was growing.

While nails do take a while to get rid of the damage they sustained, almost two months after the infection and about two and a half months following my last chemo infusion, they no longer screamed, “chemo patient!”

October 24, 2017: …and the right hand looked normal enough that you wouldn’t have thought anything had happened…if you hadn’t seen my scalp, the hair on which took its sweet time coming in. But that’s another post altogether.
October 24, 2017: a week later, after a good nail clipping, the left hand was no longer scaring children and small animals. I felt human again!

My nails served an important function, because I could use them as a visible indicator that things were, in fact, changing and recovery was truly taking place. That meant a lot to me as I awaited the return of my hair, a process that did not come as quickly as I’d been led to believe from the stories of others. But my nail journey was also something else: a reminder that everything awful, even the fear and pain and bruises from cancer, would eventually fade.

I Didn’t Expect THAT: Chemo Nails

I’ll be honest, I’ve been putting off writing about what chemotherapy did to my fingernails. While I’ve wanted to provide frank accounts of my cancer treatment experience, this particular side effect was nasty, miserable and completely unexpected.

Given that I ultimately decided to post this, there are three points I need to make: (1) be forewarned, there are a number of ugly images on this page; (2) just because it happened to me doesn’t mean that it’s going to happen to you; and (3) I suspect that I could have avoided ending up in the ER, and I’ll explain how at the end.

So here it is: the most painful experience associated with my chemotherapy actually came after I was done with chemo, and it deserves a bit of an introduction. You may be aware that how chemo works is by killing off rapidly dividing cells, which is why people lose their hair and the lining of their GI tract. Fingernails are also affected, often turning black, and for some patients, falling off altogether.

July 30, 2017: My left hand’s fingernails at the time of my fourth infusion.
Same day, right hand. The chemo drugs were beginning to leave their mark on my nails.
August 13, 2017: a few days after my sixth and final course of chemo, the nails were looking worse.

My nails didn’t fall off but they really took a beating and ached a lot, almost as if they’d been slammed in a door (not the actual “slam” experience, but the aftermath). Many of them, particularly on the left hand looked like they were starting to detach, retreating into the nail bed.

August 23, 2017: the nails are looking progressively worse.
Same day, right hand.

Several weeks after my last infusion I noticed a little something under the nail of my left ring finger, like a bit of swelling. It didn’t look like much of anything to me, nor to my oncologist during a Friday, August 25 appointment, although he lamented that I might lose that nail.

August 23, 2017: I noticed some swelling under my left ring finger’s nail and figured that it was starting to lift off and that I’d eventually lose it.
Another view of that “bubble” under the nail.
August 25, 2017: HOW could I have possibly NOT been worried about this?
These photos were taken in the evening after my August 25th oncologist’s appointment, and because he hadn’t been immediately alarmed, neither was I. Just my luck, the 25th was a Friday, and good old “I-don’t-want-to-be-a-bother” me figured this type of thing was normal and I’d wait to see how things looked on Monday.

Saturday, August 26, the increased swelling looked like a good-sized bubble under that nail. Sunday was worse, with far more pain. By that night I was in serious agony and even though I had already dubbed one of the nights after my first chemo infusion as the worst of my life, Sunday night definitively stole that title.

By early Monday morning I was in excruciating pain and paging my oncologist who exclaimed, “Hie thee to the ER!” I had a full-blown infected finger and there was a red line traveling down my hand and into my arm, meaning it was on its way to becoming systemic. I have no idea what I was thinking, not contacting my oncologist over the weekend, but the infection evolved very quickly. Had I known…

August 28, 2017: need I say more? In the space of a couple of days, everything turned nasty. And I do mean, nasty. My nails may have looked ugly before, but nothing compared to this. This was a bad situation getting worse. The pace of deterioration was accelerating and waiting in the ER was excruciatingly painful.

At the ER, healthcare workers winced when they saw my finger. I was miserable by the time they took me in, gave me IV antibiotics and (against my better judgment) morphine, the latter of which did nothing other than make me nauseated by the end of the day. I don’t understand how people get addicted to that stuff.

True relief arrived in the form of three lidocaine shots to the affected area. With the pain gone and the antibiotics at work, the ER doc lanced my poor finger and drained all the pus (no, I did not watch).

August 28, 2017: the worst part is over. And I’m not dead!
This is one week’s worth of antibiotics. Since the doc didn’t know whether the bacteria were gram+ or gram- he decided to err on the side of caution. I was popping pills every few hours.

Once that was done, I was bandaged up, got a couple of prescriptions for 7 days of heavy duty antibiotics and sent on my way.

With all this going on, my right hand wasn’t experiencing the same agony. It was a classic case of “one hand didn’t know what the other hand was doing”. My right was living in blissful ignorance.

So here are two interesting points: (1) even after all this, I did not lose that nail; (2) of my ten fingers, only one nail became infected. For this second point, I have a theory: since I’m mainly vegetarian and was eating copious amounts of veggies during chemo, I had been instructed to clean all the raw stuff with a vinegar and water solution. I did that mainly with my right hand.

Interestingly, the fingernails on my right hand hurt less and had fewer issues than the ones on my left.

I wouldn’t be surprised if the acidity of the vinegar and its antimicrobial properties were the reasons for this. Obviously, I can’t guarantee that this made a difference, but were I to go through chemo again, I’d be spending more time dipping both hands into vinegar and water.

While being diagnosed with cancer was terrifying and going through chemo was miserable, the strange reality is that this fingernail episode probably posed the most immediate risk to my life. My husband recently admitted to me that he was afraid that after enduring six rounds of chemo, I’d fall victim to sepsis. So ironic that a cancer patient would almost be done in by an infected nail!

Most amazing is how my body healed all those insults to my hands, and within a number of weeks, the signs of that infection had faded. See photos of the healing process here.