hair loss from chemotherapy

By Far, Chemotherapy Induced Hair Loss was the Hardest Blow

The Experience of Chemotherapy

If it is determined that your breast cancer treatment should include chemotherapy, your Oncologist will decide which chemotherapy drugs you'll receive based on the lab results from your core biopsies. My lab report came back with the following results for the three tumors in my right breast:

6:00 tumor:
Estrogen Receptor - Positive (20% Weak)
Progesterone Receptor - Negative (0%)
HER2 - Positive (Score 3)

8:00 tumor:
Estrogen Receptor - Positive (50% Moderate/Strong)
Progesterone - Negative (0%)
HER2 - Positive (Score 3)

10:00 tumor:
Estrogen Receptor - Positive (25% Weak)
Progesterone Receptor - Negative (0%)
HER2 - Positive (Score 3)

What is HER2?
The downside of testing positive for HER2: it is the most aggressive, rapidly growing type of breast cancer, found in 20% to 23% of breast cancer patients. The upside: since it is the most aggressive type of breast cancer, scientists focused on developing an agent that specifically targeted the HER2 protein. Dr. Dennis Slamon's success in creating Herceptin has yielded an 80% cure rate for women in this category.

In my case, my Oncologist recommended the following intravenous chemotherapy treatment, (called TCH):

  • Taxotere (Docetaxel)
  • Carboplatin (Paraplatin)
  • Herceptin (Trastuzumab)
  • Plus, Neulasta (Pegfilgrastim) - white blood cells booster (a day after chemo shot)

A good site for better understanding the chemo agents recommended by your doctor:

Why Chemotherapy is Given in Cycles

Chemotherapy attacks cells that are in the process of dividing. So, any resting cells are not killed. Cancer cells that were resting during the 1st treatment could be dividing and attacked during the 2nd or subsequent treatments. This is the reason chemotherapy is a cyclical process of administering a combination of different chemotherapy drugs designed to attack cells at different stages of cell division.

The fact that chemo drugs kill dividing cells helps explain why chemotherapy causes so many negative side effects. It attacks healthy body cells that are constantly growing and dividing, such as the skin, bone marrow, hair follicles, and lining of the digestive system. These tissues have dividing cells that are continually damaged throughout the course of repeated chemotherapy treatments. The current standard for chemotherapy treatment of breast cancer is 6-cycles spaced 21-days apart. My first treatment was Feb. 19th, 2010.

Dealing with Chemotherapy Induced Hair Loss

Even before my hair started falling out from the chemotherapy, my emotional distress over losing my hair was at the high-end of the rector scale. I talked with a close friend who is a 20-year survivor of metastasized cancer and asked his advice. He described his experience as equally stressful and went into the detail of the anxiety you feel when (all at once) a significant amount of hair falls into your hands in the shower, which is why so many people opt to shave their heads at the beginning of chemotherapy.

After thinking about it, I decided I did not want to have a similar experience. But, at the same time, I was curious if I would loose all of my hair. So, I bought a hair cutting kit and cut my hair (the best I could) to a length of one-inch. Now that I know what I know, I would have spent that $30 dollars towards a very short hair cut at one of the less expensive salons.

I lost the majority of hair in the first 3 rounds of chemotherapy, but still had enough to look like a balding mad scientist in a comedy movie; which is why a salon-quality cut would have been much better than a cut-it-yourself one-inch job. It wasn't until roughly two months after my last round of chemo that almost all my hair fell out - at the same time the new growth started coming in.

There are so many things I learned regarding chemotherapy induced hair loss. The most important: if your goal is to keep your breast cancer a secret - you HAVE to buy a human hair wig and have it styled by someone who KNOWS how to style a wig. I learned this the hard way, in a very big way.

Equally important, in regards to your budget: take the time to closely read your insurance policy so you know if the cost of a wig is covered. My husband and I assumed that something so essential to a cancer patient would be covered, only to find (after we spent $1,200 on a human hair wig) that our policy did not cover wigs - sadly unbelievable, but true.

When we bought the human hair wig, we also bought a synthetic wig as a back-up (should I need "hair" while the human hair wig was drying after a shampoo). After wearing both types, these are my "words from experience" that I can share with you:

My problems with a human hair wig:
1. The biggest problem with a human hair wig is the heat buildup. It feels like you're wearing an oven on your head. Even after the human hair wig was thinned significantly, it had MUCH more heat buildup than the synthetic. (Be aware that both human and synthetic hair wigs are uncomfortable. After five to six hours of wear, the pressure designed to keep them from falling off reaches the point that your head feels like it's in a vice-grip.)

2. Another significant problem is having it styled. If I had a "do-over" in the purchase of a human hair wig (and believe me, I don't want any "do-overs" in my chemo experience), I would have bought a second-hand human-hair wig. That would have been much less costly and troublesome, and I would have known what the finished product looked like before I bought it. Human hair wigs are designed so you can have them cut to whatever style you prefer. I had mine thinned and styled four times before it was finally halfway acceptable. The first cut was by the lady who sold it to us. As soon as she started cutting, I could tell that it was not going to be a good cut. So, I asked her to cut it long. I then took it to my hairdresser. The first time he cut it, it looked like a helmet. When I had him cut it a second time, it came out looking like a mop. Then the last cut was by the owner of the wig store where it was purchased. Her cut was an improvement, but the look was still a disappointment. As my husband puts it, my $1200 human hair wig was a costly lesson.

My one biggest problem with a synthetic hair wig:
The biggest problem with a synthetic hair wig is the fact that many people can spot it as a wig from across the room. There are certain “give-aways” of which I was initially clueless: Synthetic hair is much shinier than human; and synthetic hair has a bend to it that looks like you just left your hair-dresser. If you have this look all the time, you’re likely wearing a wig.

I did not want to go public with my breast cancer - at least, not during the period of time in which I was crying all the time. But, my synthetic wig gave it away. As described above, trying to have the human-hair wig styled to look natural and thinned so I didn’t suffer from the heat, took time and energy that I did not have while enduring the side effects of chemotherapy. It wasn’t until July, after both the chemo and first surgery (bilateral mastectomy and first step of the reconstruction process) were over, that I finally had an acceptable cut of the human-hair wig. By that time, the word was out that I was sick.

One part of my hair-loss experience that really saddens me is the behavior of two people I had considered friends. I described in “My Advice to Someone Who Wants to Keep Her Cancer Ordeal Private” section how one person ran her hand up into the base of my hair to confirm it was a wig. The other person firmly grabbed me by the back of my head during his hello hug greeting, which he has NEVER done in the many years I’ve known him. Did these people really think I would not notice? I mention this to forewarn you - people can really be that callus and stupid (and to let them know, yes – I did notice).

Preparing for the Experience of Chemotherapy

Before my first chemo treatment, I talked with a friend of a friend who survived breast cancer five years prior and who now volunteers her time to talk with cancer patients. The number one point she stressed was that everyone she has talked with agrees: Chemotherapy is not as bad as you think it's going to be. I wish she hadn't told me this, for my chemotherapy experience was horrible. Maybe, I shouldn't have walked into it thinking it wouldn't be so bad.

I know that everyone is different and we all react differently to different foods, medicines, etc. Given that there are various chemo agents prescribed for the various types of breast cancer, as well as different stages of breast cancer, it's not surprising that the side effects from chemo can vary immensely. So, please keep in mind while reading about my experience of chemotherapy, I'm only describing my experience. Yours, should you encounter a fight against cancer and have to endure chemo could be very different. Maybe the best advice I can give: Prepare yourself for the worse and be very happy if the worse is not so bad.

My First Chemotherapy Treatment:

Day one of the first treatment (a Friday), I was given premeds, followed by Taxotere and Carboplatin via an IV drip. The next day I received a shot of Neulasta (a white blood cell booster). The following Monday was an IV drip of Herceptin. (The Herceptin is given separately in the first round of chemo to better monitor the source of serious side affects, should they occur.)

Everything went fine, (with the exception of a mild face rash that responded well to Clariton D) until Sunday night when I experienced a colon blockage. I was up the entire night dealing with the problem. It was so bad that at one point I was pulling the blockage out by hand. I know this is gross, but, I never knew my little butt hole could get so big! That episode was followed by a week and a half of severe diarrhea (with the worse smell you can imagine), and worrisome bleeding hemorrhoids. The diarrhea was so bad that, three nights in a row, I was up every 2 hours with the squirts. The following week was a bag of severe lower back pain, mouth and tongue sores, total exhaustion, nose bleeds, acne, and brain fog.

The Second Chemotherapy Treatment:

Each chemotherapy session included an appointment with my Oncologist. During this appointment I asked if we could reduce the number of days between the chemo sessions. I explained how much I had dreaded this second session during the few days prior and stressed how much I wanted the chemotherapy experience to be over as soon as possible. To my delight, given my excellent physical condition and strength, my Oncologist agreed to reduce the timeframe between treatments from 21 days to 17 days. (This agreement was contingent on having good lab results prior to each chemo session.)

The second treatment of chemotherapy went much better. My biggest complaint was two days of total exhaustion - to the point that I had to leave work at 1:00 one day. I still experienced the horrid smelling diarrhea (which was explained as the dead cancer cells leaving my body), mouth / tongue sores, lower back pain, and face acne, but it wasn't as severe. I had started seeing my acupuncturist every nine days, and he was able to work wonders. I was back to feeling half-way normal in just over a week, whereas the first round had knocked me for a loop for two weeks.

The Third Chemotherapy Treatment:

Since the second Chemo round had been such an improvement over the first, I was optimistic that the third round would be even better, but it wasn't. I experienced the majority of symptoms in the first two rounds, at about the same intensity as the second, with the addition of worsening acne and a serious facial rash that required a considerable amount of makeup to conceal, my legs feeling like cement from just climbing the stairs, severe cramping in the arches of my feet at night, plus a twitching right eye and ringing in the ears that would not stop.

The Fourth Chemotherapy Treatment:

The fourth Chemo treatment was a VERY emotional round. My Oncologist was running a little late for our 8:00 appointment, so as I sat waiting in the lobby I started reading an inspirational book my boss and his wife had given me.

In an opening page, titled "A Gift of Encouragement", they had written: "We pray you find strength and comfort when you need it most. May you lean on Him for all things." I can't explain why I reacted as I did. I know I was touched by their kindness and caring. Maybe it had to do with me not mentally wanting to recognize myself as a cancer patient, facing my mortality. (I kept visualizing myself as healthy while, deep-down knowing that I was in a fight for my life.)

Anyway, I started to cry, and by the time the nurse had me in the exam room, taking my temperature and blood pressure, I was sobbing. After she left I calmed myself down. But, when my Oncologist and his assistant walked in, it was clear to them that something was wrong. He nudged me to talk about it. I did, explaining how the book had set me off. Then cried as I explained how I felt physically. I'd found ways to control the big stuff, like the lower back pain and colon issues. But, it's the culmination of the little stuff - the constant ringing in the ears and twitching of my right eye; a worsening facial rash and acne that I couldn't find a product to control; very blood shot eyes; large veins popping in my forehead, having to wear a wig - how I HATE wearing that wig! I'd reached the point of it all being too much. They understood and tried to comfort me, explaining that the 4th and 5th rounds are the hardest emotionally.

After the exam, I felt bad for the nurse who had to place the needle in my vein for the Chemo drip, for I started to cry again. She asked if I wanted a minute, I shook my head no, so she got the IV started while I sat there sobbing. I calmed back down during the chemo drip. But, when I left, I cried the entire trip home, as well as hours after arriving home. My Oncologist called in a script for something to calm my nerves. But, the drug seemed to make me feel more agitated than calm, so I only took it for one day.

My Oncologist and his assistant were definitely correct about the fourth round being very emotional. It felt as though I was in tears more often than not. By this time, my surgery - a bilateral mastectomy had been scheduled for June 8th and I was not looking forward to it. I could not wait for it all to be OVER!

Besides the increased emotional distress, the physical side effects experienced from the fourth round were pretty much a continuation of side effects from the third. I still had the facial rash and acne, ringing in the ears, eye twitching, blood shot eyes, cement legs from climbing stairs, and cramping in my feet. The one noticeable change was the pattern of diarrhea followed by constipation experienced in rounds one through three turned into a continuous problem with constipation. Four to five days of the horrid smell diarrhea following chemo had finally stopped. The one new side effect was the effect on my taste buds. EVERYTHING tasted AWFUL!

The Fifth Chemotherapy Treatment:

By the fifth round of Chemo I was a mess, emotionally and physically drained to the point that I just wanted to pull the covers over my head in the morning. I was very fortunate to have a job, for once I made it out of bed and to the office I was able to focus on my work and take my mind away from the ongoing aches, pains, and frustrations of chemotherapy. But, on some days, making it out of bed was a real struggle.

There were a number of new side effects in round five, but the majority of problems were a continuation of round four. I still had the constipation, colon cramping, a constant dirty-salty taste in my tongue that made everything taste bad, no energy, lower back pain, ringing in the ears, cement legs, and pain in my feet at night. The new side effects were numb fingers followed by fingertips bleeding, feeling as though I was about to pass out, eye lashes falling out, eyes continuously watering, and a terrible rash on my chest that quickly started spreading up my neck and down my arms and legs. Luckily, a script to stop the rash from spreading worked. But, the itching was so intense that I badly bruised both my arms from all the scratching.

The Sixth Chemotherapy Treatment:

Finally, I made it to round six! Finally, the LAST one! No matter how bad it was going to be, I knew I would make it through it - one way or another. But, after the severe chest rash of round five, I was very nervous over how bad the next rash would be - especially considering the terrible facial rash of rounds three and four. So, fearful anticipation was high.

There were no new side effects experienced in chemo round six (which I found surprising). Consistent with round five, I still had the constant ringing in the ears, constipation, crying at the drop of a hat, constant dirty-salty taste, continuous excess tearing, cement legs, and feet cramping. But, my lower back pain and colon cramping problems intensified dramatically, as well as a constant feeling of exhaustion. Luckily, there was only residual itching from the last rash.

Recovery from Chemotherapy

Today is August 15th, 2010 – almost three months since my last round of chemotherapy. What I can tell you at this point on the subject of recovering from chemotherapy is that it is not a linear process. I had expected to go through two weeks of chemo-hell after the last round on May 21st, followed by a gradual process of feeling better and better. It doesn’t work that way – at least, not for me. Relief from the side effects is cyclical, in that some days and weeks are better than others. Just when I thought I had experienced significant improvements, unpleasant side effects that had been gone for weeks return. So, no matter how frustrating this gets, I guess the key word here is patience.

Remember – just take it one day at a time.