Nobody knows the Taxol troubles I’ve seen.


Nobody knows the Taxol troubles I’ve seen. My dose-dense chemo regime consists of 4 infusions of a combination of doxorubicin and cyclophosphamide (known as AC) followed by 4 infusions of paclitaxel* (known as T, or Taxol), over 16 weeks. I experienced most of the lovely side effects of the AC infusions, including nausea, constipation, and drop-dead fatigue. But I got through it with lots of support from family and friends, and my nurses at Sloan.

Before I started Taxol the nurse in the plastic surgeon’s office mentioned that patients do better on the Taxol portion of their treatment. The massage therapist, who I am seeing for surgery-related tightness, mentioned that patients do better on Taxol. Even nurse Brian told me the nausea will be gone on Taxol. (The nausea is gone but so is my appetite, except for ice cream). But he did warn me about possible bone and muscle pain and neuropathy. What he didn’t say was how intense the pain might be.

After the steroids wore off I felt like I was in labor for 3 days. The pain I experienced was not just the same intensity as labor (i.e., a 9 on a scale from 1-10) but also the exact location and quality of labor pain – contractions focused on my pelvis and uterus with shooting pains down my legs. I was too weak to stand for more than 5 minutes. I had to breathe through it. It was seriously as though I was going to have a third child. Where was my midwife when I needed her! The irony of having just written about her wasn’t lost on me. Tylenol didn’t help. Vicodin didn’t help.

Since I had such a severe reaction Dr. Latif offered the option of a reduced Taxol dose every week instead of the full dose every other week, but noted that treatment would be lengthened by a few weeks. She sweetened the deal by saying I could skip the Neulasta shot I give myself 24 hours after each infusion. She said the efficacy is the same. But I want to get this over with, didn’t want to schlep hours every week for even more weeks, didn’t want to throw off my newly established schedule for surgery and radiation, and there was no guarantee that I’d experience the same level of pain again. So I decided to stay the course, provided she agreed to prescribe massive painkillers. I faced my second Taxol infusion on Friday armed with oxycodone and hoped for the best.

This time was better in that it was not reminiscent of labor. (You don’t really want to have to go through that unless you are going to get a baby out of the deal, and even then not if you’re over 40.) Instead the slightly less intense pain was scattered throughout my body, with stabbing then lingering pain from my skull to my toes but mostly in my legs. But the oxycodone took the edge off enough that I could sleep; hot baths were key; oddly enough, knee massages helped more than pot; and by Wednesday I was able to manage a short walk.

So now I am halfway through the Taxol portion of my chemo, with 2 more to go. I have to say it has been incredibly bad. When I first heard pain in muscles and joints I thought, No problem. As a runner I’m used to being sore: I’ve had stress fractures, Planar Fasciitis, Piriformis Syndrome…. This was nothing like that. Not even close.

But everyone who knows me knows that I am the eternal super-optimist, viewing that half-full glass through rose-colored lenses. All those running-related injuries took weeks to months to resolve whereas the Taxol-related pain, intense as it was, started on Sunday and lasted through Wednesday, with muscle weakness and dazed confusion (What just happened? Where is my baby?) persisting for a few days after the pain. In a nutshell, it was do-able.

Based on my experience so far, what I’ll need to get through the next 2 Taxol infusions is this: someone to massage my knees while I smoke pot and eat ice cream in my steaming hot bath while all strung out on oxycodone.  While I’m doing that, here is what will be going on inside me:


*Originally isolated from the bark of the Pacific Yew tree, Taxol is a drug used to treat a variety of cancers, including lung, ovarian, breast, and head and neck cancers. Through stabilizing key structural components within the cell called microtubules, Taxol interferes with the division of cancer cells and, hence, slows tumor growth. Microtubules are, so to speak, the protein “girders” that help create cell infrastructure and, depending upon how these girders are assembled, fate. Basically, Taxol stabilizes this infrastructure by strengthening girder connections with additional rivets in the form of molecular bonds. In the case of cancer, these rivets prevent the cells from assuming the more malleable structure required for cell division and, in turn, tumor growth.


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5 Responses to Nobody knows the Taxol troubles I’ve seen.

  1. Mary Tulloss says:

    When you are up to it, let’s get some ice cream. Saw Julia today at the pool and she told me you
    were having a treatment today. Hope that you feel better than the last two times.

  2. Jesus H Christ. I have no words for your eternal optimism. But I’m so glad that you can muster it up in the face of such pain.

  3. amygotcancer says:

    So sorry to hear of your pain with the Taxol! It sounds awful. I had the weekly doses and no Neulsta, so I was one of those “taxol is easier people.” But we’re all unique
    …that’s for sure. Wishing you well and lots of steroid infused productivity.

  4. Amy, Pain from #7 just began yesterday. So far its a bit less intense this time, and I’m less reluctant to take the pain killers, so I think it will be better. I read your post about tamoxifen and I’m thinking that you also sound like quite the optimist as well. Hang in there.

  5. lmarieallen says:

    Hi there. I’m sorry you’re having such a bad time with the taxol. As soon as they told me everyone thought was easier, I knew I was in trouble. It was a nightmare for me. I did the 2 dose-dense cycles and then switched to weekly. I know that it extends treatment, but for me it was a lifesaver! I was left with 6 weeks of weekly infusions at a much smaller dose, which made it oh so tolerable. It flew by.

    Also, you’ve probably tried this already, but the extended release Claritin got rid of the bone pain for me. I took it starting the morning of infusion and for about four days after. Steroid withdrawal is hell!

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