Last year at this time, I feared that I had heart issues based on what I had read about some of the cancer medications that I had been on, so I went to the cardiologist and they administered some tests. When I came back to the cardiologist to discuss results with the doctor, I was told that they had found “something” in the echocardiogram and Holter monitor readings.
But I still had questions, so I had a consultation with the cardiac nurse, who went through everything with me.
In the back of my mind, there’s a fear that my body is harboring serious health problems.
And it turns out that while they did find “something”, it wasn’t really anything out of the ordinary, beyond normal wear and tear. I was assured that my heart was very strong and healthy and I could continue to push through high-intensity workouts.
Still, it was recommended that I get checked out again this year.
But you know what? I’m not going right now. It felt like anxiety about the scans and then waiting for the results did worse things to my heart than whatever I might have been already experiencing.
I talked this over with my oncologist, who agreed.
The fact is, there are things that you need to get checked out, especially as a cancer survivor. But for other things, especially without a specific indication that there’s something wrong, you are simply looking for trouble. And if you’re looking for it, you’re going to find it.
Our bodies are not perfect. And the older we get, the more aches, pains and abnormalities we have. That doesn’t necessarily mean that there’s anything “wrong” that immediately needs to be fixed.
For now, I’m halting my search for trouble and taking the time to breathe deeply and just live.
Anxiety was the driver for me to get tests run. I was overreading about everything that could possibly go wrong–given the medications that I had been taking–and then rushing out to make sure that it hadn’t yet in the hope that I could rectify any budding issues.
And to be fair, there are still things that I could look at, still specialists I could contact. But perhaps I need to chill a bit…
…but perhaps I need to chill a bit. If it were to progress, would I stop exercising? Absolutely not. So then perhaps it’s best to take a wait-and-see approach for now.
All of this is so different from cancer, which drives us to seek treatment immediately. I am forever primed to worry about what might be happening in my body. But I also recognize this as a psychological side effect of cancer. I can’t let fear take over the rest of my life.
So for me, it’s time to stop looking for trouble, stop fearing for the future and simply relax and enjoy what’s happening in the present moment.
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…
Running late with this post as I’m furiously cleaning our apartment in advance of the Christmas holiday!
I noticed a few mornings ago that when I made a fist and then straightened the fingers of my right hand, the joints didn’t stick at all.
It took over 300 days…but I’m happy to celebrate the end of the side effects!
While this may seem like an odd thing to celebrate, it marked a milestone for me. This was the last side effect attributable to letrozole that I had been experiencing, and it was finally gone. Letrozole is an aromatase inhibitor that blocks production of estrogen and is used as endocrine therapy for breast cancer patients who have estrogen receptor-positive tumors. I’d been on it for about 14 months after switching to it from tamoxifen.
For reference, as of today, I am at Day 307 since stopping the medication, so it’s taken quite a while for this joint side effect to subside. Yes, there are other things still plaguing me, such as memory issues, low libido and difficulty maintaining muscle (even with strength training), but those are more difficult to separate out from the garden-variety effects of menopause.
The sticking fingers began in August 2020 (about 8 months after starting letrozole) and were getting progressively worse. By March 2021, when I called it quits with the endocrine therapy, a number of finger joints were sticking and painful, particularly in the morning.
At that point, I was having trouble getting up off the floor, as I was having issues with joints throughout my entire body. The medication was affecting various aspects of my life, making it difficult to exercise and, as I like to put it, lowering the quality of my existence. Following discussions with my oncologist, we both agreed that my risk of breast cancer recurrence was low enough to stop the meds.
It’s been quite a journey to get to the point where I am now.
Shaking this last side effect of letrozole reminded me how far on this cancer journey I’ve traveled. There have been so many ups and downs, friends made and friends lost to the disease, that it was easy to forget that nothing in life is permanent. Time passes and situations change, sometimes for better, sometimes for worse.
The concept of “CANCER” used to terrify me, and after I was diagnosed, I hit a low so deep I thought I’d never be able to crawl out of it.
Gradually, as my experience with the disease played itself out, I came to accept the uncertainty about the future. As the end of 2021 draws near, I inch closer to the 5-year survival mark. The fact that I can straighten my fingers in the morning without any pain or sticking is a perfect example of how while I cannot know what the future will bring, I can deal with the “now”. And this “now” is not so bad.
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Best wishes to everyone for a very Joyous Holiday Season and much promise for 2022!
The last time I was researching the link between cancer and sleep, noting the myriad benefits gained from solid nighttime rest, I was surprised to see mention of melatonin’s role in decreasing the risk of cancer.
For anyone who might not be familiar with it, melatonin (a tryptophan derivative) is a naturally-occuring hormone secreted by the pineal gland that signals when it’s time to sleep and wake. It’s mediated by light levels, with the amount of melatonin in your body increasing as the sun goes down. You’ve probably seen melatonin on the vitamin shelves at your local store, as in recent years it’s been popularized as a non-addictive sleep aid. What I hadn’t realized was that its effect on cancer cells has become an active area of study.
I dug into the PubMed database to find there was quite a bit on this topic. However, note that not all the journals in which these results were published were familiar to me, so I cannot vouch for the rigor of the peer review, however, there was a general consensus that melatonin showed promise.
Melatonin shows a lot of promise as a cancer fighting hormone.
It’s well-established that women who work night shifts experience disruption of their circadian cycle and have an increased risk of breast cancer risk, purported to result from extra circulating estrogen (Cohen et al., 1978, Lancet). Researchers are now linking that disruption with a decrease in melatonin production.
Amin et al. (2019, J Cell Biochem) describe the action of melatonin as it relates to cancer: “Melatonin via its receptors and various second messenger pathways decrease[s] cell duplication and increase[s] cell differentiation.” Since cancer tumors are composed of a proliferation of poorly differentiated cells, this means that the action of melatonin works against the process by which cancer develops and progresses.
Amin et al. continue by noting that melatonin “regulates estrogen-dependent pathways (by nonreceptor-dependent means) and reduces the production of oxidants; as a result, melatonin inhibits cell toxicity and mutations….Melatonin interrupts estrogen-dependent cell signaling and also causes reduced estrogen-stimulated cells in breast cancer. [It] is a mammary tumor inhibitor…[as relates to the] development, progression, and metastasis of breast cancer via a number of molecular mechanisms.”
A randomized, double-blind, placebo-controlled research study showed that melatonin has a neuroprotective effect that can counteract the effects of chemotherapy on “cognitive function, sleep quality and depressive symptoms” (Palmer et al., 2020, PLOS One). These are significant side effects that have a profound impact on the patient’s quality of life, and anything that may relieve these will improve the entire treatment experience.
Griffin & Marignol (2018, Int J Radiat Biol) noted that melatonin administered to subjects before they were exposed to ionizing radiation resulted in the breast cancer cells being more sensitized to the radiation therapy, rendering it more effective. And melatonin seemed to reduce the radiation-induced side effects exhibited by both human and rodent subjects.
No matter how many drug treatments are available for cancer, they do no good if the cancer cells develop a resistance to them. In a study published this year, Sang et al. (2021, Cancer Lett) found that melatonin increased the effectivess of drug lapatinib in HER2 receptor-positive breast cancer cells that were originally resistant to the drug, suggesting that melatonin could be a promising adjuvant therapy for treating advanced HER2+ tumors.
So, melatonin may reduce breast cancer risk, make existing treatments more effective and help protect patients against negative effects of these therapies. Does that mean you should run out and gobble melatonin every night?
Many studies are first run on animal subjects, but to truly determine whether a treatment will be effective for cancer patients, it must be tested on humans.
No! As tempting as it sounds, that’s not an advisable course of action. Many more studies still have to be run to evaluate the exact mechanisms by which melatonin acts on physiological processes. Some of the results in the cited studies were based on small sample sizes; good for proof of concept, but following up with larger scale studies is critical. Some studies were run on animal models which are not the best human analogues. In addition, there’s little direction regarding proper therapeutic dosages. Establishing those will take additional research.
Keep in mind: a naturally-occurring hormone like melatonin likely has a “sweet spot” in terms of dosing, and determining the ideal amount may be tricky. Just because you can buy melatonin gummies in 10mg doses does not mean you should be taking that much.
Furthermore, melatonin may elicit negative side effects in some people, including headaches, nightmares and nausea. Side effects tend to be short-lived with short-term usage but there’s still not enough information available about long-term safety, so taking it for longer periods of time is strongly discouraged.
Note also, the articles I’ve mentioned above were selected because they describe recent research, although some of these are review articles that espouse the authors’ opinion, backed up by research selected for the purpose. If you’d like to read the above studies yourself and the links I’ve posted do not provide you full access, please consult your local university library for copies (copyright laws prohibit me from providing access to pay-only articles, regrettably).
Finally, it may be that some of melatonin’s benefits might be its undoing. Reiter et al. (2017, Int J Mol Sci) note that melatonin is inexpensive and readily available, and therefore there might not be the same level of interest in researching and developing it for cancer use as there might be with a novel drug with the potential to be more lucrative.
Where does this leave us?
I would urge you to: 1) Ask your oncologist about what they would recommend, given the research that’s coming out. They are still your best source for information. FranticShanti.com is only a blog and can be used as food-for-thought but definitely not for determining your course of treatment. 2) Learn how to read scientific studies. There are free courses on educational site such as Coursera.com that explain research design and interpretation in layperson terms. They can offer instruction on reading research with a critical eye. 3) Keep an eye on emerging research. Databases such as PubMed are excellent sources for health research. Even if you’re not well-versed in research design, you can look up articles to bring to your next visit with a health provider. 4) Do not take megadoses of melatonin! There is still so much we have to learn about this hormone as it relates to cancer, and self-medicating with melatonin in the hopes that “maybe it’ll help” is dangerous. Again, your oncologist remains your best source of information.
Promising drugs aside, get your sleep!
I do encourage you to respect your circadian rhythm by establishing good sleep hygiene practices to improve the conditions for your body to create and release its own melatonin. Proper and adequate sleep will always benefit you!
And so we get back to the idea that launched this post: sleep remains the ultimate good.
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It bears repeating: ALWAYS ask your cancer team about starting any new medication or supplement, regardless of how well-supported it is by research.
Ever get the funny feeling that something’s wrong?
Like things are a bit “off” but you can’t be sure? I’ve been dealing with that ever since I got off letrozole, an endocrine therapy for breast cancer with a reputation for being difficult to take.
As of this posting, I’ve been off letrozole for 117 days exactly–yes, I’m counting. I’m still shaking off side effects like stupid-crazy joint stiffness, but at least I can tell things have improved.
That’s not what I’m talking about here.
I’ve taken a few rides in the MRI tube already. Not in any hurry to repeat that.
Right now I’m having some “really intense” memory and focus issues. I’ve put “really intense” in quotes, because I talk in superlatives so that my concerns are taken seriously. It’s a bad habit, especially when speaking to an oncologist, because it’s a sure way to end up in an MRI tube. Again.
In the past, my oncologist suggested that my memory problems might have been related to anxiety and not the medications I was on. That’s quite possible, although it’s hard to tease apart “anxiety” and “med side effects”. I mean, simply being told you have cancer causes an immediate spike of the Stress-O-Meter. For someone as anxiety-prone as me, it’s like I’m constantly red-lining.
Now I’m off the endocrine therapy and my memory and distractibility seem to have gotten even worse. What I had before wasn’t like THIS.
It’s kind of like saying, “This hurts. I think I’m being hit on the head with a hammer.” But then you actually get hit by a hammer, and think, “WHOA, now THIS is being hit on the head with a hammer!”
If thoughts are beads on a string, my beads are dropping off at a constant rate, leaving me wondering what I was about to do three seconds ago. And getting distracted by shiny objects. Couple that with having to learn a complex new financial system for work (grrrrr, Larry Ellison), not having helpful documentation to do so and having to go through that while being mainly confined to my bedroom for over a year…yeah, it’s a mess.
I am not being rational and I know it. But I’m still on high alert and dialing my fears down is going to take time.
Because my breast cancer was HER2+–which has been associated with metastases to the brain–my anxious little self immediately thinks, “Wait, maybe this is cancer’s spread stealing my thoughts???” I think that I will forever be jumping to that as the first possibility.
That’s not completely unreasonable, either. According to “Medical News Today”, memory problems are listed as one of the symptoms of brain metastases, along with headaches, stroke, seizures, confusion, dizziness…okay not really experiencing any of those.
And the Mayo Clinic metastasis website asks: what are the most likely causes of my symptoms? So, I admit, a brain tumor probably isn’t, given all the other more likely possibilities: menopause, work stress, loneliness, lack of purpose…and *cough* listening to Twitch video streams while I’m trying to focus.
So really, these memory issues could be a completely normal effect of menopause, but in the cancer context the possibilities are frightening. It takes a lot of perspective to be able to look at what’s going on and realize that it’s not aberrant or dangerous. I feel like an idiot for jumping to the worst conclusions, but here I am…
Looks like visiting a cardiologist after stopping aromatase inhibitors for breast cancer was a good idea after all.
The letrozole (aromatase inhibitor) that I’d been taking has been associated with cardiovascular effects, and since I was feeling progressively worse from the medication, I wanted to make sure that everything checked out okay.
With the improvement in surivorship comes an increase in the diseases that come about from cancer treatments. The longer people live, the more long-term effects take their toll.
It seems like the American Heart Association (AHA) agrees with my concerns. An April 26, 2021 statement by the AHA underscored the complicated picture of cancer treatments, in this case hormonal therapies for breast and prostate cancer. As stated in the article by Okwuosa et al. (2021) published in Circulation: Genomic and Precision Medicine, “As patients with hormone-dependent cancers continue to live longer, CVD [cardiovascular disease] has emerged as a leading cause of mortality and morbidity among survivors of these cancers.”
Ironically, breast and prostate cancers are some of the most common cancers in women and men, in addition to having some of the most effective treatments. The number is of breast and prostate cancer survivors is growing. Part of the success of treatment is expressly due to the development of hormonal therapies for long-term (5-10 year) use. At the same time, the increase in CVD problems is a result of this success, because as cancer survivors age they experience greater amounts of age-related cardiovascular events than do non-cancer surivors.
So, what do you do when the treatment that’s increasing your chances of beating cancer may also be increasing your chances of a cardiovascular event? Isn’t that one of the many problems with cancer? If your treatment works well, then that opens the door to having it work “too enthusiastically”, possibly with long-lasting negative effects.
It still comes down to healthy behaviors.
The AHA statement paper cited here stresses the importance of communicating with your oncological team about CVD risk factors and possibly requesting a referral to a cardiologist, having appropriate tests conducted (ECG/EKG, echocardiogram), and–in my opinion the most important thing the survivors themselves can do–modify lifestyle (diet, exercise, smoking cessation, etc.) to maximize your chances of a cardiovascular event-free survivorship.
While it may be frustrating to think of entering into an “out of the frying pan, into the fire” scenario with a potential leapfrog from cancer to CVD, nothing is written in stone. You can make an effort to protect yourself and avoid being a statistic. Focusing on healthy living will benefit you in many ways and is guaranteed to improve your life, no matter what your risks.
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Link to the AHA statement: Okwuosa et al. (2021) Impact of Hormonal Therapies for Treatment of Hormone-Dependent Cancers (Breast and Prostate) on the Cardiovascular System: Effects and Modifications: A Scientific Statement From the American Heart Association. Circ Genom Precis Med, DOI: 10.1161/HCG.0000000000000082
It was just few days short of four years from my diagnostic mammogram, the one after which I was told I had triple-positive breast cancer.
If you or someone you love has been through this experience, you know the drill: surgery, chemotherapy, radiation, maybe monoclonal antibodies, endocrine therapy. Yours may come in a different flavor, but the dish is the same, give or take.
Last Thursday, following three years of endocrine therapy (two of tamoxifen and one of letrozole [aromatase inhibitor]), I called it quits, with my oncologist’s permission. The side effects of the letrozole became too much for my joints, my brain, my intimate relationship, and possibly even my heart. My doc said he knew it when he saw me and agreed that enough was enough.
Yes, this should be me right now, since I’ve eagerly awaited this day for a long time. But it’s complicated…
Keep in mind the song that all of us cancer folk sing: “everyone’s experience is different.” Based on my personal situation, and after a medical consult, this was the right decision for me.
I wanted to know what to watch out for, so my doc said:
1. Unexplained weight loss 2. Persistent cough 3. Neurological issues (i.e., seeing things that aren’t there, blurred vision, etc.)
Obviously, there are other signs of cancer recurrence, but those are what my oncologist wanted me to be particularly wary of. And then he noted that he couldn’t remember the last time one of his HER2+ patients had a relapse, so effective is the Herceptin that we’re given. But it has heart risks.
Since I’ve been off letrozole only a few days, I’m still experiencing most of the side effects–it will take several weeks to shake them.
I almost don’t know what to do with myself, and I’d be beside myself with joy if it weren’t for a possible heart arrhythmia (!) that I am experiencing. I’ve already scheduled an appointment with a cardiologist.
‘Round and ’round and ’round we go…
Yeah, I’m miffed that there’s always something with cancer. A week prior to my onc appointment I’d been in my car at a traffic light when I felt heart palpitations, sort of–and then I started seeing dark spots, like you do before you faint. The episode passed, but I had been having those brief palpitations for months, minus the spots. Maybe once a day? Maybe less.
And over a year ago, I went in for a regular health check-up, during which time the nurse practitioner checked my vitals and noted that there was some irregularity in my heartrate.
Just like with my cancerous lump, I waited, thinking would go away. But chemo and especially Herceptin are cardiotoxic, and aromatase inhibitors have been associated with heart arrhythmias. So just as soon as I got off the cancer carousel, I’m getting on the cardiac one–until I’m able to rule out problems.
I have both a 3-D mammogram and an EKG next week, and I’m way more worried about the EKG. Who would have expected that from a breast cancer survivor?
Warning: This is going to be a bit of a gripe-fest…
This coming week marks my one-year anniversary of taking letrozole, an aromatase inhibitor designed to reduce the risk of recurrence of my breast cancer by reducing the levels of estradiol (precurser to estrogen) in the body.
Aromatase inhibitors are problematic. Significant numbers of women discontinue taking these medications prior to the planned end of treatment, and this is due mainly to side effects (Kadakia et al., 2016, The Oncologist).
A year into this, I can completely relate. When I was on tamoxifen, the side effects were less well-defined. With letrozole, they’re unmistakable.
Most infuriating are the physical ones, especially the arthralgia (joint pain). I’m an ardent exerciser, regularly engaging in rowing, lifting weights and interval training. Arthralgia puts obvious limitations on my workouts. Maintaining muscle is harder and as a result I need to work out more intensely. So I push it, but it feels like I’m treading water with an anvil tied around my neck. I know that working out and building muscle is going to be tough at age 54, but I question the benefits of a drug purported to lessen the chance of cancer recurrence when it’s affecting my ability to engage in something (exercise) which is strongly associated with a decreased risk of cancer (Cannioto et al., 2020, JCNI). It doesn’t seem to make sense.
No matter how tired I am in the evening, some nights are restless and NOT refreshing.
Another effect of the drop in estrogen is fatigue, which can be intense by the end of the day. Then, okay, I go to bed early, but my sleep quality is hit-or-miss. Sometimes I experience weird “restless leg” symptoms. This is a “gripping” or aching sensation that can only be aleviated by moving my legs. Any position that feels comfortable at the moment soon won’t, and I do an awkward dance as I move around in bed. Not a great recipe for falling asleep. Luckily this doesn’t occur every night, but when it does, it impacts the next workday.
As a side note, I usually take magnesium supplements before bed, not only to aid in muscle recovery, but also to help with sleep. I don’t know what my nights would be like if I didn’t take them regularly, and I’m not willing to find out.
Over time, the pain in my joints and limbs has increased. It’s most pronounced in my fingers, toes, ankles, hips and elbows, and I’m generally most achey as I’m going to sleep and when I wake in the morning. Sometimes it’s bad enough that it wakes me at night–usually a burning sensation in my fingers and toes–but that happens only occasionally.
By the way, in case you’re wondering if that’s bone metastases instead of side effects, trust me, I’ve already thought about that. I’ve also done the obligatory googling, and while I’ll let my oncologist know about the pain at my next appointment, I don’t think it’s metastasis. These symptoms are just your garden-variety letrozole side effects.
One of the most striking physical side effects (that I could actually show to other people!) didn’t kick in until about Month 8 of taking the letrozole, when the stiffness in my fingers escalated to the point where several of them would lock up in the morning. If I made a fist and then attempted to open my hand, a few of my fingers would “stick” and, as I continued to try to straighten them, they’d suddenly sproing open.
I’ve already mentioned the physical fatigue, but there’s a deeper, darker side to this, which I’ve written about previously. The rest of my family — husband and two teenagers — are up and lively in the evening as I’m dragging my sorry butt to bed. I feel a strong disconnect from them. More specifically, I feel old, which is not surprising, since decreased estrogen is associated with ageing. I feel like I don’t belong with my family anymore, like there’s a distance between us. So, I’m taking a medication to help prevent a possible recurrence of my breast cancer, but the price I’m paying for that reduced risk seems pretty steep.
The disconnect from my family makes me feel alone…and old.
Adding to that feeling of disconnect is the sudden drop in my libido. Perhaps this would have been easier to take if I were single, or divorced (which is the direction it sometimes feels this is heading). I’ve already written about the issue here so I won’t rehash all my frustration. Suffice it to say that while sexual side effects are mentioned in the scientific literature and in doctors’ offices, they’re not really talked about from the standpoint of the effect they have on relationships. This is one of those intangible issues that is difficult to quantify and even more difficult to discuss.
There are also cognitive problems that involve (1) concentration, (2) focus and (3) memory. Listen, I need all three of those for work. I cannot express how crippling it feels trying to learn new convoluted financial software when my brain simply refuses to cooperate. Truly, taking a mindfulness break helps immensely, but it simply doesn’t solve the problem. It just keeps me from putting my fist through my monitor.
Ah, yes, irritability. Put that down as another side effect.
This would be me. If I were a baboon. And used the Oracle Financial System.
So I’m a year into letrozole and I’m searching through the scientific literature to see what, truly, are the rates of recurrence for women who discontinue the medication prematurely, and what other factors come into play in terms of reducing risks.
My goal is to get through at least five years of combined endocrine therapy (tamoxifen and letrozole), and I’m already more than halfway there, having finished two years of tamoxifen before I got on the aromatase inhibitor train. I mean, only two more years of this.
Maybe I’ve hit the high mark of side effects and they won’t get any worse? Maybe?
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Note: the side effects I’ve mentioned are not the only ones that occur with aromatase inhibitors. These are simply the big ones for me. Before you start any treatment, make sure you discuss with your oncologist what sort of adverse reactions you can expect and what you can do to mitigate them.
There seems to be so much back-and-forth in the life of a breast cancer survivor. I really thought things would settle down eventually, but it seems like they refuse to.
The ultimate goal, of course, is to squash the risk of cancer returning, but the way medicine goes about it is not always kind to the patient.
Let’s back up. First, there’s the shock and anxiety of being told you have breast cancer. Because the average age at diagnosis for women is 62, most of these women grew up at a time when cancer was strongly linked to death. While treatment, and therefore survivability, has greatly improved in recent decades, a cancer diagnosis is still frightening.
That life-saving treatment comes with a reputation for nastiness. Surgery seems like the easy part; it’s the chemotherapy and radiation that we’ve heard horrible things about. I myself had six infusions, each three weeks apart. I assure you, I memorized the calendar, knew the dates of the infusions and the order of my drugs. Even about what time each one would begin on the infusion day. I counted the minutes to the end. Then came radiation, but that seemed like a cake walk in comparison.
Once through ALL of that, you figure that the treatment portion of your cancer is over and you have the rest of your life to ride into the sunset, basking in the warm glow along the way.
But for those of us with hormone receptor positive (HR+) cancer, there’s this little thing called endocrine therapy that seems like an afterthought when you’re going through the “tough stuff”.
Yeah, you think you’re done, but then you realize, there’s more…
Yet it does feel like a slap in the face when you’re “done”, because you’re not really done. And that’s where we find out that while chemo and radiation were the “running the gauntlet” phase of cancer — abusive, but time-limited — for many, the hormone therapy afterwards is like doing the Ironman triathlon. Except the water, bike and road are on fire. Because it’s hell.
Okay, about here is where I have to stress, my experiences with tamoxifen and the aromatase inhibitor letrozole (Femara) have not been as brutal as for other women. At the same time, they’ve not come without complications. Currently, I’m dealing with painfully stiff joints, weird bone pain, loss of libido (hubby’s fave), hair thinning (grrrr, I thought I was done with this when I finished chemo!), memory issues (wait, what?) and other side effects that I’m pretending I can ignore.
On the bright side, it is gratifying to know that what I’m experiencing is not all in my head, nor is it as bad as it could be. In fact, I found a valuable post (one of many!) on the blog Nancy’s Point, entitled “The Dark Side of Aromatase Inhibitors“. Not only is the post a great read, but what makes it so eye-opening is the comments section. Nancy invites readers to share their experiences, and wow, do they!
If you choose to venture there, keep in mind that everyone reacts differently to these medications. People with negative reactions may be quicker to share than those with less extreme reactions.
So if you’ve been told that you need adjuvant endocrine therapy following the “main” cancer treatments, do your homework. PLEASE know that not everyone has miserable side effects from them, and I strongly urge you to give the medications a try to see how well you tolerate them. You may surprise yourself. Note what side effects you’re experiencing and the date of onset so that you verify that the reaction is related to the drug.
Then, if you truly cannot handle the discomfort (no shame there!), you will be able to show why. Discuss other options with your medical team. Whatever amount you were able to tolerate will offer you that much more protection, and that will still benefit you.
I feel that I need to revisit the whole letrozole thingie, just to be fair.
In my last post I expressed my frustration with the continued side effects of the estrogen-supressing aromatase inhibitors designed to reduce the risk of cancer recurrence. Cancer survivors face a considerable amount of pressure from our oncologists to stay on these medications, but everyone agrees that their use does not come without health risks or hits to one’s quality of life. The latter is a squishy concept that is not easily quantifiable.
Deciding whether to take medications for the length of time prescribed, or stop them early, comes down to an individual’s tolerance of both the side effects and risk.
So after all the complaining in my last post, the big question I have in front of me is that, given that I’m already postmenopausal — regardless of the fact that it was the medication that pushed me into menopause — if I were to stop letrozole, would I experience a significant improvement of my complaints? And if I could reverse the side effects how long would it take? None of that is clear.
Granted, there remains additional risk in taking an aromatase inhibitor, particularly long-term, as the cessation of estrogen production contributes to aging and age-related maladies, including heart issues, bone loss and broken bones. And certainly, there is gradual collagen and hair loss, not to mention suppression of the libido.
There are some bright spots in this.
But if we ignore that for now, I have to admit that not all days are as bad as how I described them. I don’t lie in bed staring at the ceiling while every single side effect hits me all at once. I experience them here and there. And most of them are tolerable.
My fear is about the future. If I’m feeling this now, what will it be like in another six months or a year? What if things go downhill gradually and I don’t realize it until later when I’ve slid so far down that nothing is salvageable. That’s completely ignoring the realities of the “now” for the imagined troubles of tomorrow. That is not being mindful!
But unfortunately, with medications such as these, the future is a factor that must be taken into account, and with that comes anxiety. Of course, anxiety always makes things worse. For me, it’s one of the most difficult side effects of cancer, because it magnifies all the negatives, both real and imagined.
I realized after I submitted the last post, after I complained about all the things I was experiencing, that not everything was as horrible as I thought. Things are not “normal”, and the situation is still applying a frustrating pressure on my quality of life. But maybe, for now, can I hold on and get the most out of the benefits of letrozole, and then re-evaluate tomorrow?
Frantic Shanti 