Side Effects

The Chemo Experience

I promised I would discuss my experience honestly, so I will tell you about the side effects.

Let's start with my CMF chemo, 17 years ago.  They gave me a list of possible side effects, and I had many of them. 

Nausea and Vomiting, GI issues

I never threw up, but I felt like I had been poisoned. I was nauseated for a few days, I ate strangely, like I was pregnant. I ate only mashed potatoes for a few days. I couldn't go to the bathroom normally, again for one or two days. This was before the days of probiotics. 

Fatigue

I was also getting radiation at the same time.  My blood counts got very low in this period. I was a bit tired toward the end of the radiation, and chemo was once delayed while my blood counts returned  and they hung a bag of blood in the hospital. I was tired.

Thinning Hair/Bad Nails

This was considered a less aggressive therapy, so my hair only thinned. I remember walking by a building with mirrored windows on a windy day, and seeing my hair fly up. It shocked me how thin it was. (Of course, this was nothing compared to now.)  My nails weren't great to begin with, and they got a little worse.

Fertility/Menopause

I had already had one test that suggested I was looking at menopause. CMF did it for me. I love it when the nurses ask, "date of your last period?" and I say "1996."  

Weight Gain

On average, most chemo patients gain weight. A few people do lose weight but that happens less often, and sometimes the reasons are not good. Most of us gain 35 pounds, on average. My personal belief is that our pancreas and our livers take a hit, making it harder for them to process our foods as well as pre-chemo; like having a fatty liver. Good luck losing weight using any of the normal methods! I gained that 35 pounds and I could do nothing about it.  I began to develop an eating disorder until I learned to accept my new normal.

Cognitive/Emotional

There was one more they didn't tell me about, because they didn't know: it's called "chemo brain."  These effects are long lasting. Recent studies acknowledge that we are killing brain cells while we chase our cancers. We live longer, but we give up IQ points in the process. Now that's one helluva price, isn't it? I also include emotional effects here, because your brain was injured all over. I was depressed post-chemo. I'm pretty comfortable attributing that to treatment.  

The effects were subtle: trouble remembering things, a hit with concentration and attention, and fragile emotions.  When I first learned that my suspicions were correct, I was once again in a mighty fury! No one told me that this might happen! Some feel it was a version of sexism that kept the doctors from recognizing the complaint as an actual side effect.  It wasn't until the 2000s that they admitted "well, yeah, it looks like chemo is bad for the brain."  You think?

I have already mentioned that I didn't let that stop me, however. I went on to get my technology management-related Master's a few years later, magna cum laude. I aced statistics, and had, until then, considered myself math-impaired. (Not really, it turns out...I just had bad teachers.) I don't think the cognitive deficit was long-lasting, in my case.  

There are a host of other side effects, but I didn't notice them as much.  

So, how am I doing so far?

Because of the allergy, we changed my chemo to Abraxane. The side effects are similar, but the two experiences are different.  For one thing, I go weekly, so the GI issues tend to crop up again each week.  Here's the chart you just know I'd have to have, to track my progress:

My Chemo Log Chart:
Blue= My subjective rating of how I feel, 1-10.
Red = How my incision is doing. Note the zero! Finally!

As you can see, there used to be a three-week rhythm, but now there is a weekly rhythm: I feel good until chemo, then I feel less great, then I slowly recover.  The Cytoxan and Abraxane weeks tend to be worse than the Abraxane-only.

The list of side effects is similar:

Nausea and GI Issues

As with my first experience, I have a feeling of flatness, of being mildly nauseated, most of the week. I never really do throw up, but the day after chemo, I usually run for the nausea meds at some point. I also have a taste of metal in my mouth. I'm using non-metallic utensils and dishes to help. My GI is off, of course, so probiotics are my friend. Pepcid helps the heartburn. This all is much better than the old Taxotere chemo, however. I drink 3 liters of water every day. 

Hair Loss/Bad Nails/Bad Skin

My hair looks just like my co-workers' four-month-old, only it's less adorable on me.  I have some, just not much. People like it better when I wear my hats. (Thank you, everyone.) I'm obsessing over my nails. They can fall off; I really do not want that to happen. So far, so

Look, mom, no hair!

good. 

I have yet another rash, but not really hives; it is much more like contact dermatitis. The doc says it is also a chemo rash. I'm to control it with antihistamines and steroids.

Pain

Some of us have bone pain, a feeling like the flu is coming on. That happens because the bones are working extra hard to make white blood cells. It was very difficult with the Neulasta (given for the three-week chemo, but not for Abraxane.) But, I still feel it some days now. Know what helps? Antihistamines! Remember that for your next flu, when your body aches. 

Fatigue

I'm very fatigued this time. I start out well in the morning, but I wear out quickly.  I take naps often.

Infection

Those white blood cells are taking a big hit. The doctors warn me to go to the ER if my temp rises to just 100.4. Anything might become infected. I often wear surgical masks in public or to go shopping now.

Mouth/Throat Sores/Dry Eyes

My mouth is fine, and my throat gets scratchy but I really feel it in my nose! Ick!...that's all I'm going to say.  My eyes just got iffy a few days ago. Humidity helps.

Weight Gain

Yep. More weight. Nothing I can do. I can promise you I'm not eating as much as I normally do, but the scale ticks up. Some of this may be attributable to the generous doses of corticosteroids I've consumed, but I think little gal that I was in my 20s and 30s will never be back, between thyroid meds and this. It is what it is.

Healing

As you remember, I was still healing my mastectomy incision. It's nearly February (it was made in October.) As of last Sunday, I think I'm finally there.  I still won't stress the incision with too much movement just yet.

Cognitive/Emotional
I've told my hubby to follow me around to make sure I shut off the stove and close doors. I do have a bit of short-term memory loss. I am also emotional; I can panic or feel sad easily -- and to be honest, I just let them flow. I don't have to be professional or manage myself in public. Overall, I'm not depressed or angry this round, at least not so far. There is a huge difference in my attitude this time around.

But that story will be another post!

Let me know how you are in the comments, or on Twitter, Facebook or Inspire.com.

The Journey Now: Part 4

Pathology and Numbers

After the shock of the incision burst, I began to recover.  I got a copy of my pathology report as my stitches healed. There are so many more dimensions to the process of staging breast cancer now:

 Diagnosis:

• Invasive Ductal Carcinoma, moderately differentiated (It's been upgraded! Lucky me!) Margins negative (they got it all.)
• Foci of Ductal carcinoma in situ, intermediate grade. Margins negative.

• Largest tumor size: 1.8cm (Ok, that's a lot bigger than the September ultrasound.)
• Histologic grade: Score 3 -- Less than 10% of the tumor is forming fingers to invade with (that's good.)
• Nuclear pleomorphism: Score 2.  It looks just like cancer cells look.
• Mitotic Rate: Score 2  How fast cells are dividing -- this is good.
• Total Nottingham score:  G2, Moderately differentiated.  I WIN 6 to 7 POINTS!!!

It appears there is only the one tumor, still in situ (meaning in site, in a single organ like a duct). There is no invasion of my lymph nodes that they can see.  

• ER (Estrogen Receptor) Positive -- 100%
• PR (Progesterone Receptor) Positive -- 1%

Both of these mean that hormonal treatments like Tamoxifen are likely to work. 

HER2: equivocal or negative (depending which report you read) 

TMN descriptors (short hand for the doctors to describe and stage the tumor):  pT1c: the tumor is stage I due to size, but a moderate grade based on the total tumor score.  Category pNX: there were no nodes because they were no longer there) and not metastatic from what they could see. The tumor is very similar and very close to the original (right next to the marker my surgeon left.) It is recurrent.

It looks like we caught it early.  If this had been the 90s, I might have been placed on a hormonal treatment like Tamoxifen and we'd be done. But there's a new test in town, pardner!

My surgeon's office belatedly sent samples of the tumor off for the latest in cancer diagnoses:  Oncotyping.  Essentially, a lab looks at the genes, and determines how aggressive they are by how much  Ribonucleic acid (RNA) they express. The genes are rated on a score of 0 to 100.  The oncologists (cancer docs) use this rule of thumb:

This made an impression.

• Under 18, no chemo necessary.
• 18 to 26, maybe.
• Above 26...oh, yeah. You need chemo.

I waited for two weeks to get my score, and when I learned, I was devastated:  34.  

My 10 year risk of recurrence on Tamoxifen alone was 23%.  Almost one in four. Too high!  With chemo, it drops to 6 or 7%.  

This is a good time for me to talk about how I feel about chemo.  I HATE CHEMO!!!  There, I said it.  I thought it would kill me the first time around, and as I got smug about recurrence, I allowed the thought to creep into my head that I would never, ever agree to chemo again.  It had been sooo devastating! Confronted with those numbers, I changed my mind.  I still have lots to do. Chemo it is. 

Absolute Benefit of Chemo on recurrence after 10 years.
Note the big difference in the solid (Tamoxifen)
vs. dotted (Chemo + Tamoxifen) line.

My oncologist told me this is going to be a bit more difficult, but for a shorter time: just 12 weeks, with chemo administered once every three:  A dose of Cytoxan (which was the "C" in the CMF chemo I had had years ago) and something newer: Taxotere, a cytotoxic drug made from the Yew tree.  

"Twelve weeks? Ok. Will I be able to work? I did the last time."
"No. This is more aggressive. I don't want you trying to work"  Hubby silently signs "yes!" He doesn't want me to be heroic.
"Will I lose my hair?"
"Everyone is different, but almost certainly." 

Great.  No hiding my cancer now. For the first time, people will know I am locked in a cancer battle. I have, up to this point, told very few my story.  Now, that's all gone. I would have to go on disability, and anyone who saw me would know. Including my daughter! She was little the first time around; I don't really want her to see me sick.

"I have plans to see my daughter in Texas after Christmas. Can I wait until after the holidays?"   

"No, not really. We can't wait that long, but you should be able to travel between chemos. You may not feel well, but you can travel." 

Next, we had to confront the possibility of metastasis.  Although the pathology report suggested everything was ok, I had actually had a phantom pain in my back/side/under ribs for weeks. It could be quite bothersome. My doctor sent me in for an ultrasound.

Cancer scare time:  
1. 10 mm echogenic lesion in the right hepatic lobe (MY LIVER!) is incompletely characterized. Although findings may relate to a hepatic hemangioma,given history of breast carcinoma malignancy is not excluded. Further evaluation with dedicated liver CT or MRI is recommended.
2. Multiple nonshadowing echogenic foci adherent to the gallbladder wall are suspicious of gallbladder polyps measuring up to 5 mm. A six-month followup exam is recommended to reassess.

AAAHHHHH! Any finding of cancer instantly puts me in Stage IV. Metastatic cancer is a whole new world. Next up, a PET Scan: 
Impression:1. No mass within the liver. The findings seen on ultrasound likely correspond to the small amount of diaphragmatic fat intimately associated along the posterior aspect of the liver.
Gallbladder and everything else looks good. Ok, back on the shelf, you little bugger. I am, officially, pM0 (no metastasis.)

Round 1 seemed to go well. I handled chemo with most of the usual and familiar side effects. It wasn't until day 17 that I had a problem.  It started with itchy palms on my way back home from Texas. Because I had had a seafood dinner in Louisiana, I thought I might have developed a sudden food allergy.  

But the next day, in the RV, I awoke covered in hives. By that afternoon, I knew I needed to see a doctor. We found a great ER in Decatur, GA. They got me loaded up on steroids and antihistamines, but they only lasted a few hours. We stopped again when my face and tongue began to swell, but the doctor in Tennessee didn't have anything more to offer than an epipen, just in case. Thank God we were in the RV where I could just lay back and try not to itch. Poor Brian, he had to put pedal to the metal. The next night we arrived home, but we were exhausted. I decided I would go to the ER the next day, if I was no better.  And I was definitely no better.  

I saw an allergist that afternoon.  She consulted with my oncologist.  They called it, no doubt about it: I was allergic to the chemo! 

Kudos to the allergist: there is a really powerful antihistamine, and I began to get better. But what would happen with my chemo?  My oncologist had an answer.

There is a version of Taxotere that is much easier on the system. It's called Abraxane.  It's the same cytotoxic drug, but instead of being dissolved in a solvent (which was the source of my allergy) it is dissolved in albumin...egg white protien.  It's given every week, however. Some believe it is more efficacious, both because it is given more frequently in smaller doses, but also because it "sticks" to cells better in the albumin.

Why didn't I get this all along?  One word: insurance.

I am heading for Round 3a this week. (The Cytoxan is still given every third week, so four total rounds are still anticipated.) I do tolerate the Abraxane better, but I do have side effects. More on those, next post.

Tell me about your journey in the comments, or on Twitter, Facebook or Inspire.com.

The Journey Now: Part 3

When I got my mammogram results, I was furious!

To explain why, I have to digress a moment, and explain something about cancer survivors. We get lots and lots of cancer scares. These are the moments when we have the elephant sitting on our chest, but we get to tame it back up on the shelf. There are suspicious lymph nodes, shadows on ultrasounds, questionable x-rays and iffy mammograms. Each one causes the elephant to grow, each reprieve puts it back on the shelf.

The elephant
 makes itself known.

I had had just such a scare: my surgeon was sure that one of my lymph nodes was suspicious. My endocrinologist was doubtful. The FNA tech was downright dismissive.  And sure enough, it was just a little swollen. It remains a bit bigger than other nodes, and I know my doctor is going to keep an eye on it. But there was no cancer.

I go through a sort of mini-hell every time: what does this mean if it is cancer? Surgery? More RAI? Will it upgrade me to a higher stage? (The only stage left for my in the Thyroid Cancer department is stage IV  As with all cancers, it's the distant metastasis stage. With thyroid cancer, that means something slightly different, than, say breast cancer, but you still DON'T WANT TO BE THAT GAL.) 

So, when the findings came back, and it was clear that everyone but my surgeon was not concerned, I relaxed and got mad.  Another scare.  I had had plenty, in my time.  Looking back, almost all of them turned out to be something.  I got off this time. But I was still mad at having the stress.

I had recently changed doctors, and moved my care to a new health system: Henry Ford. It was the first time they did a mamm on me, but I brought some of the old ones for them to scan when I came in for my mammogram last August. 

A few days later, I awoke when my phone buzzed at 5 a.m. The mammogram findings came in. I read them sleepily. Radiologic resident Briana somebody found a 7mm area of suspicion:

Left Breast Findings:
There are scattered fibroglandular densities (25% - 50% fibroglandular). The patient has had previous radiation therapy and a previous lumpectomy. An area of focal asymmetry is present measuring 7 millimeters in the upper inner quadrant posteriorly. (Emphasis mine.)

IMPRESSION:

Breast Cancer Cells

LEFT BREAST: S/P previous radiation therapy and lumpectomy. Focal asymmetry measuring 7 millimeters in the upper inner quadrant posteriorly. Additional projections, spot compression and ultrasound are recommended at this time.

That's when the blood started to boil. 

Briana? This kid must be the age of my daughter, who is named Brianna. I'm a cancer survivor! Why didn't the head of radiology read my films? (He did.) Why didn't my doctor call me? (I beat her to it, basically.) I am not going through this again!

But I did. After I talked to our company Health Coach (I highly recommend them) who talked sense into me, I got the ultrasound. It was even bigger and hypoechoic and vascularized. That means the spot is a solid lump, and it has veins feeding it lots of blood. These are consistent with cancer, of course. I also looked at the x-ray myself. Now that I'm a "professional patient," I've learned to recognize when things are amiss. This mass was definitely not normal.

The Henry Ford team did the Fine Needle Aspiration (FNA) that afternoon. It was cancer, breast cancer, again. It appeared to be recurrent, but they would take a much closer look with surgery.  The only options available to me now are mastectomy and possible chemotherapy, depending on the tumor's properties. 

I met my surgeon, and liked him. I agreed to have it done at Henry Ford. (I had quite the struggle about going back to University of Michigan; I decided to move all of my care under one roof, eventually.) As with many surgeries, I got through it with flying colors, and I was ready to be back at it soon.  I lost the drain in three days.  The doctor removed the stitches in a week, and put steri-strips over the incision.

A few days later, as I am dressing the wound, it all bursts wide open.

Talk about panic! I screamed and I don't think Brian has ever moved faster. He had to squelch my panic by pointing out that wasn't blood I was gushing, just fluid. But I had to go back to the ER, and I was in surgery that afternoon.

My doctor was away, so his partner  -- well, actually, his partner's resident -- closed me back up again.  I didn't get those stitches out until December. Even then, I wasn't healed fully. It seemed I wasn't healing because the past radiation was slowing my healing mechanisms. I needed to be ready for the next step; I needed to be closed.  

I didn't stop bleeding until January 20 or so, long after we figured out what came next.

The Cancer Elephant Wakes Up -- The Journey, Part 2

The Next Adventure: My Thyroid

After more than a decade of cancer-free mammograms, I truly began to believe that I might never have to face cancer again. This illusion is the hope all cancer survivors have: that we are now cancer-free; that we will never again have to pump poison in our veins, wrestle with dangerous radiation; that we will walk away from our cancer elephant.

The cancer elephant is an analogy that I learned from someone early in my cancer journey:

My teal, pink and blue cancer elephant.

"Sometimes, cancer is like a decorative elephant. It sits on your coffee table: a part of your life, but not a significant one.  You dust it and keep it clean, but otherwise, you don't think about it.

Sometimes, the cancer elephant wakes up, and grows huge, and decides to sit on your chest. The secret is taming the cancer elephant."

My cancer elephant had been relegated to the bookshelf in the basement. I seriously believed that I would never see my cancer elephant again. Hah!

As I got older, I began to develop tooth problems that were persistently painful. For years, I chased a problem with my teeth, first number 30, then 31. I had root canals and had the root canals redone. The pain returned over and over. After years of treatment, I realized I had an allergy to the metal in my crown. Meanwhile, my thyroid received dental x-ray after dental x-ray, all of them unprotected by the most basic of protections: a thyroid collar.

A thyroid collar: make sure
your dentist uses this.

My poor thyroid! It had no protection at all! First there was the onslaught of radiation in the 90s. Now it was exposed time after time to the stray dental x-ray radiation, to my frequent flights -- to all of the radiation of our modern daily life.  It finally succumb to the cells that forgot how to die: I developed thyroid cancer.

I had just begun a new job; this job was awesome. One day, following a cold, I felt a bit of a lump on my throat, and my ENT sent me for an ultrasound. Well, that didn't go well..findings were "hypoechoic, vascularized", suspicious for cancer.  I found myself at a type of doctor I barely knew existed: the endocrinologist. Mine did a sloppy fine needle aspiration. I developed a huge bruise a few days later, and then I got the findings:  Crap! It looks like I have another cancer.

"Oh, but don't worry: if you have to get cancer," the doctor tells me, "this is the kind you want. This is the good cancer."

Really?  Did you just say that to me?

Let's clear this up right now: there is no good cancer. It offends Thycans (thyroid cancer survivors) when you say that; it minimizes their experience, which is far from fun. The reason the idiot doctors say that is because it is very survivable. You may live for decades with untreated cancer.  Most of the survivors will die of something else.  Thyroid cancer has its own special set of issues that change your life forever. The all-too-common medical myth minimizes the changes that each survivor faces (not a complete list): 

• Inadequate medication with some persistent side effects -- medication the patient must take to survive.  Allergies to the meds, weight gain, thinning hair, depression and low, low energy -- symptoms that are all too common amongst us. 
• Exposure to conditions caused by medication: being hypothyroid (too few thyroid hormones, or hyperthyroid (too many.) I was both at various points, and there is at least some evidence that that may have awakened my next cancer.
• Exposure to dangerous radiation, and possibly exposing those you love while you wait out your exposure. The doctors send you home!
• Problems with: voice (some never recover); saliva glands (this is painful); tear ducts; breathing, bad nails. Survivors develop diabetes from the weight gain (and it is impossible to lose weight, so stop judging); cognition and emotion regulation are impacted. 

Thyroid cancer survivors may deal with all sorts of issues -- thyroids affect nearly everything in your body. 

Thyroid surgery was not hard on me.

I quickly learned how inadequate thyroid treatment is: the medications they give you replace only a portion of the things your thyroid used to do, and the standard of care is remarkably insensitive. Thyroid medical science has made few gains in over 50 years. 

I soon had to change endocrinologists. I moved my care to University of Michigan. I had my thyroid removed there. The surgeon (who was brilliant!) performed a thyroidectomy and central neck dissection. She found a few nearby lymph nodes as well. 

The diagnosis:  papillary thyroid cancer, well-differentiated, stage III. (Well-differentiated means they can see the difference between the tumor and the surrounding healthy tissue. It's considered a good thing.) I'd have been stage II if I was younger. My survival stats say I'll die of something else, like most survivors.

I had the minimum efficacious dose of Radioactive Iodine (RAI) in order kill any remaining cells.  I have been on a journey ever since to balance my medications to optimize my well-being.

A word to those who are going through this. Some of us do just fine on the standard medication, called T4 or Synthroid. I was not one of them. I was tired, couldn't think clearly and I was depressed. The doctor added T3, or Cytomel. That allowed me some of my feeling of well-being to return. Others choose desiccated thyroid to replace all of the hormones the thyroid made.  I'd like to try that someday, but for now, I'm ok.

Once again, I returned to my work and minimized my time off. I plunged back in, to ensure that I would not be pigeon-holed into obscurity. In fact, I think I really brought some new ideas and some great work to my company for a few years, and they did reward me well. I loved working with my team. I put my elephant back on the shelf.

Until this year's mammogram.

The Beginning of My Cancer Journey -- Part 1

I was riding high in the 90s. I had recently run my state's 1996 Electoral College. I received awards for my work. I could practically cite every one of the 990+sections of Michigan election law, plus their court cases and AG rulings. I loved my work, and I worked hard. Few people could do what I did every day; administering the law and keeping democracy safe. My star was rising, despite a less than supportive boss, and a difficult work environment. I foolishly believed that, at 38, I could overcome anything.

 I lived and breathed the Michigan Election Code.

I hadn't met cancer yet. 

On my way to the office holiday party, I was adjusting my "party bra" when I felt something...it felt like a grape. Oh-oh. I called the doctor as soon as the office opened. In two weeks' time, I was at the surgeon, getting a biopsy. 

I would play poker with this surgeon: he couldn't keep the concern he had off his face. After the pathology came back "suspicious," I was under the knife in his office for the lumpectomy the next week. I watched him work in the mirrored light above me. It was Christmas Eve when I got my gift: the cancer diagnosis I dreaded. Intraductal carcinoma, stage 1, ER and PR+, HER negative.   

I had to go under for the lymphectomy (23, all negative.) Then it was a whirl: I had to teach my arm to reach, despite the adhesions, because radiation was coming soon. Radiation and CMF chemotherapy: that's what they prescribed. My funeral home director of an oncologist wanted me to have nine rounds.

Radiation went well, and the chemo was...fine. I knew I was in trouble at work, now that I was sick. I wanted to minimize the amount of time off work; I didn't want to be vulnerable. I missed less than a day of work throughout my treatment. I didn't lose my hair, though it got thin, and I remember feeling only a little bit tired. I was such a hero!

Yet the oncologist and I could not agree. I disliked his communication style, and I began to butt heads with him. I talked to my doctor, and she recommended another oncologist. She was wonderful!  She talked to me like an adult, and showed me why her plan made more sense for me: only six rounds of chemo; only one more to go.

My hair grew back, but I found myself in chemopause. I gained quite a bit of weight. Most importantly, I was a bit depressed, and very,very angry. I had little ability to suffer fools. I began to question my choices, my life.

The toxic environment in my office meant that the sharks were circling. My "friend" sabotaged my work. After I came back, I tried for a while. But one day, overwhelmed with the workload and with zero support, I simply walked out. I went on leave, but two weeks later, I launched my private sector career in technology, and I never looked back. 

Recovery took years and the after effects of chemo upended my life entirely. Yet, I went on to get a Master's degree magna cum laude, to launch an incredibly successful career, and to enjoy better health once again. 

I did encounter my second and third bouts with cancer a few years later: I developed both basal and squamous cell skin cancers. Each was excised, leaving me with scars that remind me every day that I need to care for my skin. For the next decade or so, I only sweated the mammograms. I had the illusion that I might be cancer-free.