“Scatterbrained”: Yeah, Chemo Brain is Real

After a few years of wondering what the heck is going on with my head, I joined a Memory and Attention Adaptation Training (MAAT) class generously provided by my cancer center (which I’ll be posting about on a later date).

This is gratifying on two levels: first, that I can learn new strategies for dealing with the memory issues and distractibility that have been plaguing me since finishing breast cancer treatment five years ago; and second, and perhaps more important to me emotionally, that what I am experiencing is REAL. It’s officially termed Chemotherapy Related Cognitive Impairment (CRCI) or, informally, chemo brain.

I’ve been told that “you’re imagining this” (I’m not) or “you’ve always been like this” (I haven’t) or “just focus harder” (I AM!!!) or even “this is just an excuse” (Argh! No!), coming from people who have been annoyed by my memory lapses.

Chemo brain spends a lot of time just wandering around without an idea of how to get anywhere.

My brain isn’t lazy. As a matter of fact, it’s the opposite problem. My brain is too busy.

In the MAAT class, we learned of a study from the University of British Columbia (UBC) by Kam et al. (2016, Clin Neurophysiol) that examined what happens inside those brains that suffer cognitive impairment from cancer treatment, even years later. In that published study, the experimental group consisted of nineteen breast cancer survivors. All had undergone chemotherapy for early stage breast cancer and had subsequently self-reported cognitive issues.

Researchers at UBC compared these survivors against twelve (non-cancer) control subjects in a task that required sustained attention. All the participants’ brains were monitored via electroencephalogram (EEG) both while working on the task and while at rest.

The results were vindicating for me and, I’m sure, for others experiencing this. Normal brains cycle through periods of focus and periods of “wandering”. However, as the UBC researchers stated in a summary of their results (published here): “We found that chemo brain is a chronically wandering brain, they’re essentially stuck in a shut out mode.”

This was true even when the breast cancer survivors thought that they were focusing. Furthermore, the survivors’ brains exhibited activity even when they were instructed to relax.

Great. We know that chemo brain is an undeniable fact for some cancer survivors and can last for years — in this study, up to three years. However, for me and some of the people in my MAAT class, it’s been five years and we’re still dealing with this, which is frustrating. What can be done about it?

When anxiety and chemo brain collide, you get a confused goat tangled up in a rope. That would be me.

It won’t come as a surprise — anxiety makes everything worse, and that holds true for chemo brain too. As mentioned above, I’ll discuss this in greater detail in a later post, but basically, a main focus of the MAAT class is learning to handle stressors in an effort to relieve anxiety.

So now that I know that what I’m experiencing is a real thing, a large part of combatting it is what I’m already trying to do — mindfulness, meditation, yoga and similar sensible self-care. And while it might seem aggravating that even with all that practice I’m still dealing with this, I’m actually bouyed by the fact that every bit of mindfulness helps. The reality is, I’ve made a monumental amount of progress from where I was when I started, five years ago.

And that keeps me going. Where would I be if I wasn’t trying?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

References:

Reader-friendly summary:
“‘Chemo brain’ is real, say UBC researchers”, UBC News, Apr 27, 2015, https://news.ubc.ca/2015/04/27/chemo-brain-is-real-say-ubc-researchers/

The published study:
Kam JWY, Brenner CA, Handy TC, Boyd LA, Liu-Ambrose T, Lim HJ, Hayden S, Campbell KL (2016) Sustained attention abnormalities in breast cancer survivors with cognitive deficits post chemotherapy: An electrophysiological study, Clinical Neurophysiology, 127, 369-378. https://doi.org/10.1016/j.clinph.2015.03.007
Please note that the above study is not available free online at this time. For a pdf free of charge, contact one of the authors (email address next to their name at link above) or your local university library. Due to copyright issues, I am unable to distribute the full document myself.

Webinar: Recent Advances in Breast Cancer Treatments

As we close out October, otherwise known as “Breast Cancer Awareness Month”, I wanted to share a video of a webinar about advances in the fight against breast cancer, offered through the Yale Alumni Health Network, led by Dr. Jamie Wells.

The speakers included Dr. David Mankoff (from UPenn) and Drs. Lajos Pusztai, Maryam Lustberg and Eric Winer (all from Yale) as they talked about research being done on hormone-positive, HER2 receptor positive and triple negative breast cancers. I’ve pasted in the Vimeo clip from Twitter, but also offer my simplified synopsis below. If you have the time to watch (~45 min for the talks, then interesting Q&As for about 20 minutes), I highly recommend the video!

In the midst of the discussions, it was heartening to hear that the doctors placed a lot of emphasis on both health disparities in different populations and also the search for treatments that would not severely impact a patient’s quality-of-life. These are two important topics. I appreciated that they acknowledged that we cannot make advances in the disease if we are leaving behind large numbers of people for whom treatment is inaccessible, and that a treatment is not viable if it successfully treats the cancer but damages the patient in other ways.

The best overall news is that since 1990, deaths from breast cancer have decreased by a third. That’s a significant improvement within the past 30 or so years, even though the prevalence of the disease is increasing. Dr. Mankoff noted that the survival rate improvements are due not simply to earlier detection, but also to advances in the treatments.

HORMONE-POSITIVE BREAST CANCER

Dr. Lustberg spoke about hormone-positive breast cancers and started with a quick explanation of the history of such cancers, and then explained how current-day personalized medicine (genomic profiling) can identify the patients who might be spared chemo based on the characteristics of their tumors, and how targeted therapies improve survival rates. She experienced some audio issues towards the very end of her talk, but not much information was lost.

She acknowledged that the “most effective drug is one you can take”, stating that there’s been an effort to try to understand the toxicity of various treatments. If the drug’s side effects are too negative, patients will have a hard time continuing to take it. She noted the importance of keeping the patient involved in the decision making process, something that all of us who have been through this can applaud. It’s too easy for oncologists to forget that they’re treating a human being who will be dealing with the concequences of heavy treatments.

HER2+ BREAST CANCER

Dr. Winer discussed HER2-targeted therapy, noting that prior to the year 2000, it was considered one of the most aggressive forms of breast cancer with common recurrences, after which the prognosis for survival was poor. As a HER2+ cancer suvivor, I am so thankful that this is no longer the case! The landscape changed with the introduction of monoclonal antibody drugs such as Herceptin, and the development of additional drugs, should Herceptin stop working, has given patients with this type of cancer much more hope for a full recovery.

Two of these new drugs for metastatic HER2+ cancer are “antibody drug conjugates” (T-DM1 and trastuzumab deruxtucan). Dr. Winer described them as Trojan Horses, as they can deliver the chemotherapy with which they’re paired directly into the cell, greatly decreasing side effects to the patient.

It’s so refreshing to hear the words “cancer” and “cure” used together in the same sentence. We are making serious progress now!

Perhaps most important, Dr. Winer actually used the word “cured” when talking about the outcomes for early stage HER2+ cancers, something that is truly remarkable. This is especially true for women with stage I cancers.

Many patients with stage II & III cancers receive the drugs prior to surgery, which can decrease the need for mastectomies and complete removal of the lymph nodes. In addition, pre-surgical treatment can guide the medical team in adjusting later therapies, based on how the tumor reacts to early drug administration.

Finally, Dr. Winer spoke of the stark disparities in cancer care, noting that black women are twice as likely to die from breast cancer as white women. Eliminating these disparities is his number one-rated area of importance for where to focus future efforts, something I strongly support.

TRIPLE NEGATIVE BREAST CANCER

Dr. Pusztai spoke of Triple Negative Breast Cancer (TNBC), and having lost several friends to this specific type of cancer, I was very interested in treatment advances that have been made. He described the differences beween TNBC and hormone positive breast cancers, noting that it’s likely that these two diseases orginated from completely different cell types, suggesting that these are different diseases and should be viewed as such.

It was exciting to learn that most of the patients with early stage TNBC disease are able to be cured (again, that beautiful word!). We now have both better treatment strategies and new drugs, and success rates are improving year by year. Dr. Pusztai emphasized the benefits of completing chemotherapy prior to surgery, going against our strong impulse to “get the cancer out” first. With the drug-first strategy, medical teams can adjust the post-operative treatments as needed.

The thing that was so amazing to me was that the recurrence-free rate of survival was 85-90% with these “modern regimens” for early stage disease. That’s impressive!

Next on the horizon is fine-tuning the right balance of drugs for patients, given that chemotherapies are still toxic.

There’s still a lot to be done, but all of this makes me feel so hopeful for a future in which a cancer diagnosis is something that we don’t have to fear.

Dr. Pusztai stated that he felt we already have the drugs with which to cure “at least some” of the metastatic TNBC patients, especially for those who are diagnosed at stage IV (rather than having earlier-stage disease that was treated and later metastasized). The idea is to utilize existing drugs but apply them using the new treatment strategies that have been developed. However, Dr. Pusztai stressed that new drugs are also being developed.

Q&As

There were a range of excellent questions that began at about the 45-minute mark, but as mentioned above, I enjoyed hearing the admissions by the doctors that they considered quality of life to be a very important factor in whether or not to continue medications, and they acknowledged that it is the patient who should have the control to balance their risks against their treatment options. Other questions included recurrence in hormone-positive cancers, development of drug resistance, genetic testing, continuation of care (“risk-stratified follow-up care”) and second opinions.

Dr. Winer commented that within a decade he felt we will have all the treatment we need to prevent and cure breast cancer in most patients, so again, he stressed that the focus must turn to making that treatment available to everyone, regardless of who they are.

LAST BUT NOT LEAST…

Dr. Winer admitted that many doctors, in treating patients, end up “taking over people’s lives and medicalizing their lives”. His approach, therefore, is “to try to provide therapy without making someone either unhappy or feeling like they are attached with a leash to their doctor’s office.” While there was some discussion related to this, I appreciated that doctors are actually thinking about this and want to allow patients to “live their lives”.

Finally, I was amused by the doctors’ admissions that even they found the drug names to be unpronounceable. It’s true that in my own treatment, I usually stuck to the easiest name to pronounce…I can’t imagine having to use those names on a daily basis!

I hope you found this helpful!

Remember: You’re in the Driver’s Seat

Since we’re halfway through October – Breast Cancer Awareness Month – this is a good opportunity to remind everyone who’s had a cancer diagnosis that you’re still in control.

That might be very different from what you’re feeling. The whole thing with cancer is the sense that your life is out of control. Even your most faithful ally, your body, seems to be out to get you, growing a tumor behind your back.

Does it feel like someone else is controlling everything in your life?

That’s to say nothing of how your weekly schedule gets highjacked with oncological appointments, radiation treatments and days recovering from chemo. Then there’s the onslaught of new medical terms, the many pills that you’re supposed to take, even the practically unpronounceable chemotherapy drug names (what kind of a suffix is “-ib”???).

If anything, this might feel like the most out-of-control time of your life. When you’re slapped with a difficult treatment plan, you want it all to stop, but your oncologist tells you, “we won’t let you skip an infusion or stop taking your medication.”

That sense of being forced to do something (especially when it’s unpleasant) can open the floodgates to a deluge of anxiety on top of the fear and frustration that you might already feel about your cancer treatment. No one wants to feel like they have no say in a matter that affects them so deeply and personally.

This life is yours…and so are decisions about your cancer treatment.

But remember this: you always have a choice. Even though your medical team might not be phrasing it that way, you are still in control.

Perhaps this tiny acknowledgement may relax some of that perceived pressure and actually make it easier to continue. Your cancer treatment choices remain yours to make, so allow that realization to help you to step back, get perspective and weigh your options. When you demand space for yourself, you have room to think and it’s easier to act in your own best interest.

So, breathe. You’re still calling all the shots.

And, hey, medical team: maybe stop being so pushy and remind those cancer patients that they get to make the decisions about their treatment and their lives. It would go a long way towards helping your patients feel better about their treatment plans, like they’re part of the team instead of a prisoner of their situation.

Maybe Being Stinky Is Not So Bad?

From what I can tell, the loss of body odor following cancer chemotherapy isn’t widely acknowledged within the medical community, but it’s certainly something that many of us have experienced.

This is NOT what you think of when someone says, “sweaty armpit”!

Based on what I’ve read, this might be a result of the weedwhacking effect that chemo drugs have on our microbiomes. Regardless, the result has been positive for those of us who find that we don’t have to worry about being smelly.

However, I happened to catch an interview on National Public Radio (aka NPR) that helped make more sense of what was actually going on, even though it was a bit of a killjoy. Listen to it here, where you can also find a full write-up of the piece.

Basically, that sweaty stink that we find repugnant is from a compound produced by bacteria living on the skin. One species of these bacteria that’s associated with an onion-like odor is Staphylococcus hominis.

Our stinky sweat may offer some protection from stuff like MRSA, shown on this CDC photo. They might look like cute fuzzy purple balls, but in the age of antibiotic-resistant bacteria, they’re potential killers.

And unfortunately, these smelly microbes are very beneficial, helping protect humans from things like eczema and MRSA (antibiotic-resistant Staphylococcus aureus). As one of the researchers puts it, sweat is an “antibiotic juice” that forms a protective layer on our skin as it dries.

Yeah, I know what you’re thinking: cancer is miserable enough, and you HAD to take away this one little thing (loss of body odor) that was the only perk to chemo?

Well, as mentioned above, I’m not qualified to definitively say that it’s the chemo that kills the skin microbes and makes you not smell. I’ve been unable to find research studies that examine the effects of chemotherapy on your skin’s microscopic residents. Nonetheless, I’ve tried to contact the researchers mentioned in the NPR story to see if they’ve had any experience with chemotherapy and loss of body odor in cancer patients. If they reply, I’ll report back to you.

For now, if you’re happy being odorless, keep enjoying it.

Another Oncology Appointment…and What’s Up With That Smell?

My oncologist appointment last week marked five years since completing my final chemo infusion (and for those of you keeping track, since I had that nasty chemo nail infection).

Lately, my oncological appointments run like this: my onc asks how things are going, I air all my grievances and we spend the rest of the visit agreeing that there’s no way to determine whether what I’m experiencing is chemo-related, menopause-related, or something that I was dealing with before but hadn’t paid attention to back before cancer.

Because there’s nothing like cancer to make you acutely aware of every twinge and creak in your body.

But that’s about it. We are running out of things to talk about. In this context that’s a good thing.

I used to lament “what could have been” had I not gotten cancer, not experienced chemo, not been pushed into menopause chemically and artificially had my estrogen levels squashed. But now, I know better. What happened, happened. And “what could have been” is pointless to ponder because it simply isn’t reality.

It took me a while to get to that place and I’m finally okay with it .

But there was something else different about this oncology visit…

I walked into the cancer center for my appointment and was hit with “the smell”. There is a distinct scent in the building, possibly the cleaning solutions used to disinfect the place or maybe a fragrance that is purposefully pumped in. I had mentioned it to my clinical counselor several years ago and she admitted that a number of people have said the same thing. The smell is familiar, given that after multiple appointments and infusions and radiation sessions, I’ve experienced it a lot and have made many associations with it.

But for some reason, this time it hit me hard and a wave of sensations washed over me. Not sure why my reaction was so strong, but I’d like to think that between my last onc appointment and this one, I’ve made the most progress in distancing myself from the frustrations of getting cancer and have actually moved on with my life.

However, that rush of emotions served as a reminder of everything that I’ve been through over these past five years. I thought that chemo was going to be the hard part. Turns out, it was the most predictable part: six trying infusions, but they came with an end date. The rest of treatment brought uncertainty and unexpected difficulties. I thought I was done after radiation…but the pills continued.

Looking back at this, while I’m technically not “out of the woods” and may never be, these last six months have felt different. Yes, I still have another onc appointment half a year from now, but I’m finally turning my face forward to the future instead of constantly looking back at the past, worried that those frights will catch me again.

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

It Took Cancer to Teach Me Self-Compassion

One thing I’ve had trouble with is expressing self-compassion. When you’re a driven perfectionist it’s easy to believe that “giving yourself a break” is tantamount to “going soft” and “losing your edge”.

I couldn’t forgive myself when I felt that I’d failed. And guess what, getting cancer made me feel like a failure. I had tried to live the healthiest adult live I could, given the sometimes-limited resources I had, often denying myself what others called “pleasures” or “indulgences”.

I’ve lived most of my life feeling like I had to constantly push myself…and that I was never good enough.

The fact that I was convinced that I shouldn’t have gotten cancer was a recurring theme early on in this blog–I was convinced that I must have done something wrong, even when I tried so hard to do my best.

I was also ashamed. Cancer, I felt, opened my life up to judgment by others.

Getting myself out of that funk took serious work. It meant rewiring my brain and allowing in the same kindness and compassion for myself that I allowed for others. At the same time, I reminded myself of a quote by author and humor columnist Dave Barry: “A person who is nice to you, but rude to the waiter, is not a nice person.” I prefer to interpret Barry’s words in this way: I cannot be genuinely kind and non-judgmental to others until I’ve learned to be so to myself.

Cancer gave me perspective to see how much I needed compassion from myself.

But how do you do that when you’ve spent your life pushing yourself, not accepting excuses? It wasn’t until I hit the lowest low that I ever experienced that I learned to dip into unadulterated compassion for myself. I imagined who I was as a chemo patient–skinny, bald, dehydrated, vulnerable, frightened. And suddenly felt it: that overwhelming desire to wrap my arms around that version of me and protect it.

And while that was “cancer me”, I realized that same version of me was the scared person inside that I had always bullied with perfectionism and accusations of not being good enough. This was who I really was, in need of and deserving of gentle holding.

It took a life threatening illness to make me realize that I deserved kindness and compassion. I believe that you are deserving of the same. Do something today to prove it to yourself.

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.

~~~~~~~~~~~~~~~~~~~~~

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…