Chemo (Taxol), Side Effects, and ME

How I Feel

Before I began receiving chemotherapy treatments, I was schooled on what to expect, what the possible side effects were, and how to prepare myself for these side effects.  This is a broad list of every possible side effect, and it was a bit overwhelming.  The list seemed endless, and at one point I thought "I don't even feel sick with cancer.   Yet the treatment to kill the cancer will make me sick?".  That logic made no sense to me.  I still shake my head when I think about how unfair it is that the treatment necessary to save a cancer patient's life can also bring a person's life to a screeching halt.  When I say a screeching halt, I mean actually living life and routines that were normal before being diagnosed.  By this I mean, we must suddenly consider everything we eat, drink, and do. No longer can we make plans with friends to stay out half the night without considering "how tired will I be, and can I keep up with my healthy friends?".   Suddenly, every decision you make has to be made with your condition in mind.  I have listed some of the side effects I was told to expect; and I've discussed how each has affected me.

• Hair Loss:  Hair Loss was the first obvious side effect I was told about.  I knew this before I was even told.  I had heard some chemo treatments don't cause hair loss, but I didn't even allow myself to hope the one I would be given would be one of those.  I was told I should expect to begin losing my hair around the time I received my second treatment.  I got my hair cut short (short for me) before my first treatment in hopes it would be easier to lose my hair when it began.  When I received my second treatment, I tried to prepare myself for my hair to fall out.  But nothing happened.  While receiving my third treatment, the nurse informed me there are rare occasions women who are on Taxol only see a thinning of hair and don't actually lose their hair.  She said "you may be one of them!".  For the first time since I found out I had breast cancer, I began to hope I may escape this dreaded side effect.  Unfortunately, just as I began to have hope and believe I may escape this, my hair began falling out.  I had managed to hold onto my hair almost twice as long as the typical patient, so I was grateful for that; but it didn't make it any easier to accept.  The morning of my fourth chemo treatment, I lost so much hair I was forced to cut all my hair off myself so I could wear a wig.  That night, my husband used the clippers to give me a very close buzz cut.  It was very difficult, and even though you expect it, it isn't easy.  I still recommend preparing yourself as I outlined in my blog "Facing Hair Loss".  I feel like this would have been even more difficult if I hadn't taken the steps to prepare myself as I did.

• Nausea:  Nausea is one of the side effects I truly expected to have and was dreading.  I do not consider myself to be a baby.  I actually feel like I am more the type to suffer in silence.  I don't like to complain about feeling bad.  But I have always had a hard time functioning through nausea.  I'm not one of those people who can feel sick, throw up, and keep going as if nothing happened.  Once I reach the point of throwing up, I am DONE.  I end up in bed and unable to function.  I was very fortunate to make it through three pregnancies with little to no nausea.  I was one of those pregnant women who every other pregnant woman hated--no nausea, swelling, stretch marks, etc.  I enjoyed my pregnancies.  So I feared "I'm going to get all that nausea three fold for all that I escaped with three pregnancies".  Not only did my doctors prepare me for nausea, but everything I read online talked about it.  My oncologist gave me a prescription for Zofran in case I have issues with nausea the day I had my first treatment.  I've yet to take one.  I have had days in which I don't feel top notch, but it hasn't been anything like I was expecting.  I expected the flu-like feeling of nausea where you cannot sit up in the vertical position without tossing your lunch.  I read all the horror stories about throwing up so much they ended up in the hospital for dehydration.  I feel very fortunate to say I have not experienced this.  I keep thinking "it's because I've only had a few treatments".  But I have been told by my doctors and nurses that chemo doesn't build up in your system and the side effects get worse with each treatment.  You either have them or you don't.  So what I've had thus far is what I can expect with this particular treatment.  Woot Woot--I sure hope this is true!

• Fatigue:  Fatigue, or feeling overly tired, was another common side effect I was warned to expect.  I thought to myself "well, I've been overly tired for about a year, so I hate to see how tired this is going to make me feel".  Even though I knew fatigue could be an issue, I planned to continue working through treatment and try to keep my life as normal as possible.  I did speak to my supervisor about being able to leave if I was too tired or simply take a day off as needed to rest.  I'm very fortunate to have a very understanding and cooperative boss who has given me the freedom to work when I can and take off when I need to.  However, I do not feel I have struggled with what I would consider to be extreme fatigue as I've read about online.  Many patients have described a tired feeling that leaves you feeling as if you simply cannot put one foot in front of another.  I felt this way BEFORE I began treatment from time to time.  One only has to go through my Facebook page to see how often I posted about being so very tired and going to bed at 7:30 pm. But I cannot say I've experienced this since being diagnosed.  I'm off work every Friday for treatments, but I have to drive two hours one way for treatment, so I still get up early (sometimes earlier than I would have to for work); and treatment days are longer than a typical work day.  So, the fact that I work four days a week as opposed to five isn't the reason.  I go to bed the same time as before I began treatment.  I sleep the same amount of time each time.  I do hope this trend continues as I would love to keep up with my busy schedule as I've done so far.

• Bone & Joint Pain:  Bone and joint pain was the one side effect I didn't think much about before treatment.  It's the side effect I glossed over when they were talking about it.  I feel like I'm in good shape,and I didn't feel I needed to worry about this.  Compared to other side effects, this seemed like the one that was not a big deal.  However, this is the one side effect I have experienced since my first treatment.  When they say bone and joint pain, that doesn't do the pain you feel justice.  It's not a simple cramp in your leg or an ache.  It's unlike any leg cramp or ache you've ever felt before.  It truly does hurt, and it goes on, and on, and on.  Is it unbearable?  No, but it is quite painful.  I have learned to not ignore it and try to just deal with it and take Tylenol or Ibuprofen when it first begins.  It does help!  I found a lot of information on the Internet about bone pain and it preventing patients from walking and requiring the needs for prescription pain medications.  While mine has hurt pretty bad, it has not prevented me from walking or made me feel I needed more than an over the counter pain medication.  I am quite stubborn about taking prescription pain medications anyway, so it would have to be pretty bad before I would even consider this.  

• Chemo Brain:  Chemo Brain, or forgetfulness, was another one I didn't take seriously.  And it seemed to pale in comparison to other side effects so I brushed it aside.  However, this mild annoyance is already making me feel as if my treatment is killing off my brain cells.  I find myself forgetting simple things.  I'm becoming more and more dependent on my calendar on my phone to keep track of things as I can't seem to keep things straight in my head.  More noticeable is my ability to spell things and stay focused.  I've always been task driven, and once I become focused on something, it's hard to get me away from it until it's complete.  Furthermore, I've always been a bit OCD when it comes to grammar and spelling.  I find myself making simple mistakes and I have to think about how to spell a word that should not require any type of thinking at all.  As in I likely learned how to spell it in the fourth grade.  It's not that I don't know how to spell it.  It's as if it's lost in a fog in my brain, and I have to wade through the fog to find the answer.  It's quite frustrating.  Especially for someone who's always been OCD about this type of stuff.  My advice on this is to power through it and refuse to give in.  Exercise your brain daily to keep the fog at a minimum.  

• Numbness, Tingling & Pain In Hands and Feet:  This one did catch my attention when it was discussed, and I was afraid I may experience this side effect.  I did not go to the doctor because I found a lump.  I was seeing my family physician because of numbness in my right hand in my pinky finger that kept reoccurring and would last regardless of how much I tried to "wake up" my hand.  It was determined my ulnar nerve was pinched; and I was going to need surgery to stop my hand from going to sleep.  While discussing the test results with my physician, she asked me if there was anything else I needed to speak to her about while I was there.  As a second thought, I asked her to take a look at a lump I had in my left breast--I was pretty sure it was a harmless cyst; but since I was there anyway (and I was due for my next mammogram), why not let her take a look and confirm it?  Because of the issue I had with my hand (which I have yet to fix--breast cancer took priority), I was concerned this would mean this was an issue I would face.  But I have not had a single problem with this.  My hand still goes numb as it did before I began treatment; but this is not related to my treatment.  This is one side effect I have read waited a few months to present itself so I'm hoping it doesn't present itself later in my treatment.  UPDATE:  I began having slight neuropathy in my hands after my sixth treatment.  It was intermittent and I didn't even recognize it for what it was at first.  I was looking for numbness, and for me; it presented itself as a very dry feeling in my hands.  As if they were chapped.  They burned and stung; but it wasn't the numbness I was expecting.  By dose 7, it has got a little worse, and I do recognize the slight numb feeling.  However, for me, it's more of a burning and stinging.  It IS painful; but I have found there are things that help.  I have found that carrying and gripping things tends to bring it on.  In essence, squeezing things.  Rather than grip the steering wheel, I'm learning to lighting hold it.  Carrying my purse or bags in my hands will quickly bring it about.  Let other's carry things, and carry your purse on your shoulder.  I really don't have advice on making it disappear once it pops up.  I rub my hands and use plenty of lotion.  This is simply because it feels better and not because it truly makes it go away though. 

• Mouth Pain & Mouth Sores:  This side effect was a big concern to me.  Sound silly?  Well, it may sound silly to some, but I openly admit I am a big baby when it comes to having sores in my mouth.  I had braces as a teenager then again as an adult, so I am no stranger to mouth sores.  I've had more than my fair share, and I hate them.  They affect my ability to talk, eat, drink, and drive me absolutely crazy.  And they seem to hurt no matter what you do to them.  So I asked about ways to avoid this as well as researching it on the Internet.  I found that taking very good care of your teeth and mouth are a first priority.  Check.  I'm a bit OCD about this (braces).  Also, the mouth sores are caused from dry mouth.  Chemo affects rapidly dividing cells in the body.  Your white blood count (fights infection), hair and saliva are the three main areas that rapidly divide in the body.  These are areas that NEED to rapidly divide.  Cancer tumors rapidly divide too.  They are just abnormal cells that rapidly divide rather than die off.  Yeah, that is the "Cancer for Dummies" version.  So this explains why you lose your hair, why cancer patients are more susceptible to illness, and why mouth sores.  From research as well as my deductive reasoning skills, I decided the best way to avoid mouth sores was to make sure my mouth never dried out.  If my body slows down in the formation of saliva, I would just have to help it along.  This meant drinking a lot of water as well as using mouth washes and toothpaste specifically for dry mouth.  Biotene is a great product that has toothpaste and mouthwash for dry mouth.  I began using it before my first treatment, and I have not had one issue with dry mouth.  Yay!  Let's pray this continues!

• Low White Blood Cell Count:  Your white blood count is your infection fighters.  When bacteria enters the body, your white blood cells attack it.  Often, your body is fighting bacteria and infections you never even know you have.  In other words, they are like these little mini ninjas that live in your body with a single purpose to kick anything's butt that means you harm.  When you get a cold or a flu, the ninjas were initially outnumbered and you "got sick".  But when you get better in a day or so, they rallied and came back to show the cold/flu who's boss.  Chemo lowers your white blood count (because this is a rapidly dividing cell).  These little ninjas sacrifice themselves daily fighting for you, and your WBC cannot rapidly divide as fast as it needs to.  This can lead to an infection or illness getting the best of you and your ninjas just can't do their job.  Each week before treatment, I have blood work; and my WBC is something that's tested each week.  Mine started out (before my first treatment) at 6.9, which is very good.  I already knew that--I was rarely sick!  I am proud to say my body maintained through my first three treatments, and my WBC changed very little.  However, on my fourth appointment, it did drop to 4.8.  I was angry at my body.  How dare it?  I expect it to continue to function as it always has--regardless of chemo treatment or not.  I know that's a bit unrealistic, but it's how I felt when I looked at my blood test results.  At any rate, 4.8 is still considered a good WBC.  I was given a flu shot this week as well, so I fear it will be a little lower as my body fights the flu virus that was injected into my body; but we shall see.

• Low Hemoglobin and Platelet Count:  Chemo can lower your hemoglobin, which can directly affect your energy levels.  Eating foods rich in iron and taking a daily multivitamin can help keep this within a normal range.  I take the Women's One A Day Multivitamin Gummies, and I've had no issues with this so ar, and my energy levels are fine.  My platelet counts are also within a good range and have not changed since I began treatment.  I am no doctor, and while I would love to say my body is just kick ass like that, I attribute this to the multivitamins.  I wish I had begun taking those BEFORE I got sick!

• Acne & Skin Changes:  This side effect was not elaborated on when I met with my doctors and nurses prior to treatment.  Nor did I see much in relation to this on the Internet.  But this is the one side effect that has made me absolutely crazy since this all began!  It's bad enough my hair has to fall out (to include my eyebrows and eyelashes), but I have to have acne worse than a teenager along with dry flakey skin as well?  Are you kidding me?  I can wear a wig, I can draw eyebrows on my face, and I can put false eyelashes on.  I can make myself look somewhat normal and hide the ravages of cancer; but no amount of makeup covers a bunch of zits all over my face.  We aren't talking a couple small zits.  We are talking about tons of zits that are big and hurt.  Not just your face but on your scalp, chest and back too.  It drove me absolutely insane!  I washed my face with every face wash I could get my hands on, nothing was helping.  However, I kept trying.  Honestly, I can't say for sure what cleared it up because I had used such a combination of products, I have no way of knowing which ones did the trick.  Before I was diagnosed, I was taking Solodyn (55 mg) daily for acne.  I THOUGHT I had issues with acne and was seeing a dermatologist to keep my face clear.  This was prescribed for the occasional zit I would get on my chin that would leave a scar.  I now know what I had before this disaster was nothing compared to this!  I had stopped taking this when I was diagnosed thinking it wasn't a necessity, and I should eliminate any medication I was taking that I didn't have to take. I now know this was a big mistake!  I began taking this again last weekend, and my face began clearing up about four days after I went back on it.  I also began washing my face with a  face wash my dermatologist had prescribed for clogged pores (I get it on my back during the summer).  Between the two, one or both of them did the trick.  Thank Goodness!  Also, I noticed my skin is much dryer than it had been prior to treatment.  Make sure you have good lotions at home, and lotion up after each shower.  I also put lotion on my legs at bedtime.  My legs and hands seem to be the worst.  Finally, the skin on my face is even dryer--even though it seemed to be full of zits. If you didn't use a good moisturizer before, start!  I have worked for too many years putting moisturizer on my face to combat wrinkles to let them take over now!  

• Taste Changes:  This is the side effect I was also dreading.  Everyone complained of this one.  Everything I read and everything I was told said food would no longer taste the same.  As a matter of fact, I was told nothing would really taste at all.  How are you supposed to eat if nothing has a taste?  I have had four treatments so far, and I'm happy to say my taste has not changed in the least.  I still enjoy all food as I always have.  I sure hope this continues as this is one side effect that would make it very difficult to stay healthy!

While talking to my Oncologist at my check-up on Friday, she was pleasantly surprised to find how few side effects I've had.  Everyone is.  No one believes me when I say I don't feel that bad.  At least not as bad as I expected I would feel.  Do I feel awesome?  No, but I do not feel awful either!  And the big question is "What are you doing to have such few side effects?".  The most honest answer is I do not know for sure.  I can speculate.  

My first thought is GOD IS GOOD.  I do not pretend to be superwoman with some secret to feeling amazing.  I do believe my God is watching over me and hears my prayers though.  Through faith and trust in God, I believe he is holding me up through this process.  Cancer is ugly; but God can use it to show he loves me and hasn't abandoned me.  This can break me down or strengthen my faith.  I choose the later.

The second thing that comes to mind that I feel I do differently than most people is I do NOT drink soda or tea.  I cut all soda from my diet about a year ago because of hormonal cysts in my breasts that were quite painful.  And they slowly went away when I stopped drinking all the caffeine.  Five years ago, I had a long period of experiencing reoccurring UTI's.  After extensive testing, they had no idea why I kept getting a UTI back, and no one seemed to be able to help me.  So I began drinking more water as a way to help myself.  And it worked.  I found the more water I drank, the less issues I had with them.  Only then did I realize I would drink 4-6 bottles of Mt. Dew a day and no water.  Seriously?  How healthy is that?  It's no wonder I had one UTI after another.  I am now thankful for all those UTI's because they are the reason I began drinking water.  

Do I like water?  No, I hate it.  That's why I never drank it.  But I found I did like the Strawberry Kiwi Propel Water.  That could break the bank pretty fast as they aren't cheap.  So I began shopping around in the drink mix section at the store.  I tried various brands and drink mix flavors until I found one I liked.  My particular favorite is the Great Value Brand (Wal-Mart)--the strawberry kiwi flavor.  A box of drink mix has individual packets.  One packet per bottle of water.  I buy bottles of water and tons of drink mix.  I literally wipe out all the boxes they have on the shelf of this flavor.  This seems to be the most popular flavor.  As long as I have drink mix on hand (I keep it on hand at home, in my car, and on my desk at work), I can drink tons of water per day.  In fact, it's nothing for me to drink an entire bottle of water in less than 5 minutes.  I do not count how many bottles of water I drink per day, but I promise it's way over 10 bottles.  

Why does water help?  Well, I did a little research; and your body needs fluids to flush out the toxins from the chemo.  The more water you drink, the faster your body can flush out the bad stuff.  A bonus to drinking a lot of water is the water protects your kidneys from the toxins in the chemo.  Without enough water (notice I said water and not fluids), the toxins sit in your kidneys and can cause kidney damage.  Your kidneys (and other organs) are working overtime to process the poison (chemo) that kills your cancer.  Help your kidneys out by giving it what it needs to get rid of the bad stuff, which is water.  Back to my reference about water vs fluids.  Many people think (myself included at one point) if they are putting liquid into their body, they are good--such as soda, tea, coffee, etc.  Have you ever noticed you can drink four bottles of soda and not really have to pee; but if you drink one bottle of water, you can't wait to go pee?  That's because your body uses water to flush out the kidneys 100%--this means 8 oz of water goes in, and 8 oz of water hydrates your body (then comes out).  When you drink a 16 oz bottle of soda, very little of this 16 oz is hydration your body can use or do anything with.  It has no nutritional value to your body, and it does not do your body any favors.  As a matter of fact, sodas and teas can dehydrate you rather than hydrate you.  So anyone out there struggling with hydration issues while going through chemo, think about what fluids you're putting into your body.  

I am not a doctor, but this makes perfect sense to me; and I know from experience how much better my body felt after I cut out the sodas and the teas.    So, the best advice I can give anyone looking for relief from side effects is to drink as much water as possible.  I don't know for a fact this is the reason I have felt so good so far, but I'm not willing to stop drinking water to find out either!  Good luck to anyone fighting this ridiculous disease.

Stay Strong!

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