Weekly Taxol Side Effects

Because statistically I am in the minority as a young person with breast cancer, I feel I may have had different reactions than say, someone in their 60’s. I wanted to put out there how I handled things as an active, fit, 31-year old woman.

When beginning Taxol, I’d find myself googling Taxol side effects. There are threads out there on breastcancer.org, for instance. But there are several, and you have to navigate posts from 2008 on. If you skip to the last page, you're left with half-conversations and more confused people jumping on the "please tell me what will happen to me!" train. Not wholly helpful.

Stuff to Consider About Taxol (and my singular experiences)

1. The weekly Taxol regimen is accumulative. That means all the bad stuff may creep up - slowly - towards the end of treatment, weeks, months or even years, after you’re "finished." So prepare yourself, and don’t expect it all to come to a halt. It may not.
2. I didn't know, and my doctors didn't know for sure, exactly what SE's (side effects) to attribute to what drug sometimes. The acne, for instance; some said it was from steroids, some said from Perjeta, some Taxol.
3. Taxol is supposedly milder than AC, for anyone going through that. Knowing that makes me want to vomit, because I still have to undergo AC; it’s on the cancer docket. *Update: AC is much, much worse and I tolerated it terribly. Pray that if you get Taxol and AC that your doc does AC first, to get it out of the way.*
4. Taxol weekly is exactly what it says it is - weekly. That means only a few days respite, if any, from the bad side effects. So don't feel badly if you keep hearing Taxol is "milder" than other forms of chemo (guilty, above) - and you're progressively feeling like terrible. It's normal.
5. You will, and I will, get through this. No one is the same; no one can predict what will happen. Maybe you'll have it worse. Maybe you'll breeze through. But feel free to use this as a resource in case you want any consolation, or commiseration, on what can happen - what happened to me.

My Timeline
(Taxol every Wednesday for 12 weeks)

Week 1 |  Taxol, Perjeta, Herceptin + Premeds: Decadron, Pepcid, Benadryl

• Stomach issues.
• Other than that - no fatigue. I went about my daily activities, working (I have a desk job) 9-5 all days except my chemo day, and felt great overall other than stomach issues.
• It's all about the Benadryl. Fun sidenote: Being 135 lbs, and never having had Benadryl through an IV, I had an unusual reaction: I started shaking uncontrollably as the room spun. Make sure to tell your nurses exactly what is happening to you so they decrease your dose.

Week 2 |  Taxol + Premeds

• Rashy teen-horror acne. I’m talking pustules on my face. Rampant. Received acne meds and it cleared up after 4 days.
• Big D. Actually from here on out, just assume I have D. Every week I have it. Yup. I didn’t have a solid BM till Week 11.
• Fever. It reached exactly 100.4, the point at which you NEED to call the doctor. This indicated infection. Not good. Chills, fever, had to leave work and call the nurse. Thankfully, the fever didn’t spike higher than that, and Tylenol did the trick to keep temp down.
• Taste. Food tasted bland and weird. But by Monday (day 6 of #2), I felt fantastic. Back to normal. I was running, working out, and eating with glee.
• Itchy scalp. This indicated the hair loss was coming. It felt like I’d worn a hat for far too long.
• Hot flashes. Not sure if this was due to the Lupron shot (to save my ovaries and shut them down during chemo), or the Perjecta, or chemo. 

Week 3 |  Taxol + Premeds

• At my own insistence, I had my port placed along with an infusion that same day. Great decision, so far, to save my tiny veins. Started noticing that the Taxol had left a skin discoloration on the back of my hands, where I was getting the infusions. This is a known side effect. The colorization is dark and looks like my hand is dirty. Splendid!
• Painful urination. It burned when I urinated for a couple days, like a UTI. Cranberry juice did not help. Then it magically went away on its own.
• Emotions: I started to lose the high I was on, the intrepid spirit I had going into this. The light was dimming, just a little. But, managed a long bike ride, exercise, continued to go to work as normal. 

Week 4 |  Taxol, Perjeta, Herceptin + Premeds: Decadron, Pepcid, Benadryl

• The hair loss started really happening. Pillow, shower, the whole bit  (I wrote extensively about already on the blog). Horrible. No way around it. My advice: Stop torturing yourself, and when it really starts coming out in your hands, cut it short, like pixie. I cut it “short” like to my chin. I think I extended the trauma this way. Should have gone pixie sooner.
• Exercise. Worked out - light lifting, running 2-3 miles, bike at the gym for 20 minutes at a time.

Week 5 |  Taxol + Premeds

• Hair. Was still torturing myself by clinging to the hair that would not cling to me. Scheduled a buzz to pixie cut, about a week too late.
• Nosebleeds started. This is due to dry air, and from week 5 on, I did not have a normal booger. Not one.
• Emotions: My diary gets very moody and morose at this point due to the hair, and the disbelief that this is REALLY happening to me. See blog posts - again I wrote up a storm about this.
• Exercise. Same level/frequency. Exercise REALLY helping with my mindset and fatigue.
• Down day. Started to realize Fridays were my down days. Mentally and physically. Recognizing what day is worse is key. I worked from home most Fridays.
• Bills. Medical bills started pouring in. Not fun, and were an added stress. Sit down, go over what you need to pay, and tell yourself it will all be fine. Plus, hospital bills are the one bill that you don’t get dinged on for being late - credit wise, or late-fee wise. Hate to say this, but take advantage of that if you need to.
• Mouth Sores and bloody nose. See below: Aquifor, and Biotene mouthwash.

Halfway Point

I was losing steam. Halfway sounds great - until you think about surgery still to come, and then more chemo after that, and Herceptin for a year, and Tamoxifin for 5 years, and forever being worried about the cancer coming back.

Week 6 |  Taxol + Premeds

• Wig days. Scratchy, tight, annoying, but passable.
• Emotions. I wrote in my diary, “Each day is a trial in someway. If not physically, mentally.” Grew weak and achy, weepy, and self-conscious around family. For instance in a house full of people having to don the wig and doff the wig at different points in the day. Especially around small children, like my nephews. I was scaring them half to death, especially when they would come into the basement bedroom where I was keeping my wig stand….This was 4th of July weekend; I was very vulnerable, and panicky to see people I knew on a vacation weekend in my hometown. I could write a book about the social ramifications of this alienating condition.
• Exercise. To stay sane, I ran, walked, biked, and this allayed some stress.
• Either this week or week before (didn't record this), we cut out the Decadron and the Benadryl. I hadn't had a reaction, so they felt this was safe after this many weeks. I never missed them.

​Week 7 | Taxol, Perjeta, Herceptin

• Big D in full force. But that’s about it; no notable SE’s this week. Woo!

Week 8 |  Taxol 

• General. Very hot out, and some fatigue, but felt overall good.
• Hair. Mike eliminated the patchy weirdness with the final buzz.
• Anxiety. Started looking ahead to surgery, getting anxious about mastectomy, and doubting my initial decision for drastic double mastectomy. 

Week 9 |  Taxol

• Difficult, weepy week. Didn’t record much about how I was feeling physically, so must not have been too bad; but I sure did cry a lot.

​
Week 10 |   Taxol, Perjeta, Herceptin

• Emotions. More low days. Started to feel depleted. My mother also feeling down and losing hope, during this time. Through osmosis, same with me.

Week 11 |  Taxol

• More of the same. Bloody noses continue, the fatigue hits harder. Mouth sores return. Face is numb. Fingernail pain and discoloration; chemo nurse says they may start lifting from the nail bed. Hard to button buttons, to push the seatbelt down to release the strap, etc. Can’t open bottles of water. Underneath thumbs and index fingers, an orange coloration. Gross. That’s how I feel. GROSS. Oh, swollen ankles, feet, fingers.
• Exercise. Still manage to walk, but running took a bit of a back seat except last couple of days.
• Emotionally. Feel like a storm cloud is over me, and that even though there is a week left, it feels like an eternity, especially since I still have so long to go. 

Week 12 | Taxol

• That's this week...stay tuned. My "end of chemo" celebration will culminate in me facedown with my boobs dangling down two holes amidst a loud racket. (Not a party, you pervs! An MRI to see if Lumpectomy + Radiation is an option.)
• [Update] - PSYCH - my last treatment did not occur. Much to my chagrin, I had to tell the half dozen people who'd come to "celebrate" my last Taxol that, wait, no, nevermind, not happening. 
• The thing is, that numb face I mentioned in week 11? I casually dropped that factoid to my chemo nurse. She then ran up and tattled on me (kidding) to my onco nurse, and voila - I'm getting a full facial/eye test like I'm taking a sobriety test and she surmised afterward that she/they didn't feel comfortable with the infusion. They'd reevaluate the next week. Neuropathy of the face is, I guess, NOT GOOD. Tell your doctor if this happens. 
• Did I mention that whenever you start to think things are going smoothly and on schedule, the big C-tard loves to rip the rug from under you? Because oh, it does.

Week 13 | Taxol

• Met with my oncologist. The big guy. Told him my full-blown-novocaine-face had lessened. He said, Where do you feel it? (Or, where do you not feel it.) And I basically pointed everywhere on my face. He goes, "Around your eyes, forehead, cheeks, and lip area? Like a raccoon?" And he made like, a raccoon motion with his hands. I nodded vigorously. "Yes! But now, not as bad."
• He gave me a hard choice: Did you feel up to it? Because he said if I really felt awful and couldn't stand to do another one, don't do it. If I can do it, do it. Helpful! I decided to round out the treatment and go ahead with the last dose. And I'm glad I did. Because I'm writing this one week later, and that extra week off in between turned into a blessing. My side effects, overall, lessened and are tapering off. [Knock on wood].

Update, 5 months after last treatment: Still, from time to time, I have papery-tipped fingernails with little feeling. But not extreme. And I noticed I drop things sometimes - keys, pens, my phone, when pulling it out of my purse or casually picking something up. My doc says this should taper off, but it's a latent sign of neuropathy. Scared me, but knowing what it is helps. Report anything weird, even months or years afterward!