Before I had breast cancer, I had very little knowledge about chemotherapy. My only vague understanding of it was that chemo filled your entire body with toxins in the hopes of ferreting out and killing any cancer cells. That was about all I knew, and frankly I was extremely negative about it. I used to say that I thought chemotherapy seemed like killing a mosquito with a bomb. I didn’t even realize that you had to go to a specialist called an oncologist to receive chemotherapy, since no one in my family had ever had cancer and I was completely unfamiliar with the process.
After I was diagnosed by my breast surgeon, she told me that I would learn whether or not I needed chemotherapy by an oncologist. I then talked to my hospitals breast cancer coordinator to understand how I would choose my oncologist and what their role in my treatment plan would be.
My breast cancer coordinator told me that it was important that I got along well with my oncologist because she said I’d be spending a lot of time with him, and boy was she right. I actually switched oncologists before I started chemotherapy, because my first one wasn’t explaining things very clearly and I wanted to be more involved than I think he expected. I told my breast cancer coordinator that I wasn’t happy with the first oncologist and she kindly intervened to switch me to another one who I felt very comfortable with and who is still treating me now, 5 years later.
When we first started discussing my treatment options, I kept asking why he was suggesting such a strong and powerful chemotherapy regimen since my breast cancer was only Stage 2. He explained that my Oncotype DX test results showed that I had a 24% chance of distant recurrence, at which point I asked, “What does distant recurrence mean?” He said, “Distant recurrence means that there’s a 24% chance that the cancer will spread to other organs in your body.”
Hmmm…as the Wizard of Oz said, “Now that’s a horse of a different color.” 24 %…that’s like 1 in 4, right? Holy crap.
Then he said that the only time they can actually kill the other cells that might have migrated from my breast into other areas of my body is right now, this one time, and that breast cancer that migrates to another organ is not curable.
Another long pause. Then we started talking about regimens, and I began to slowly realize that I was in for a long and scary ride.
He originally recommended a very aggressive course of treatment called ACT (Adriamycin, Cytoxan and Taxotere – all 3 together for 6 treatments every 3 weeks) but I decided that I wasn’t willing to do something quite that strong as I was concerned that my body wouldn’t be able to handle all 3 of those very toxic drugs all together at one time.
So he suggested the series I decided to go with, which is a newer regimen that he said was just as effective as ACT but much more tolerable: 4 bi-weekly treatments of AC (Adriamycin & Cytoxan combined together) and then 12 weekly treatments of Taxol. Although it’s a little longer (5 1/2 months vs 4 1/2) I ultimately think it was the right decision for me and my body handled it pretty well.
Each of the 3 drugs did something slightly different; the combination of all 3 provided the best option to eradicate any cancer in my body, given my specific type of breast cancer.
Adriamycin (or Doxorubicin) kills cancer cells by damaging their genes and interfering with their reproduction. It was the strongest, most toxic of all the chemotherapy drugs I received and can cause a toxic effect on the heart, so you must be monitored before and during treatment. It was scary to get the Adriamycin, it’s red and the oncology nurse has to pump it manually into your IV, it takes about 15-20 minutes. It doesn’t hurt when it’s administered but afterwards, I would get pretty sick. There are a host of different side effects that you can have from Adriamycin, but the one I was most concerned about is that my red blood cell count would drop very dramatically after each treatment which made me very susceptible to infections. If you’re going to be receiving this drug, try to stay away from large groups of people, as your resistance will be very low to any infections that might be circulating within large groups of people. I was very relieved when I received the very last of the 4 Adriamycin pumps, and I know the nurses were, too.
Cytoxan weakens or destroys breast cancer cells by damaging the cells’ genetic material. Since it was administered together with Adriamycin, these first 4 treatments were very difficult for me and I had to really dig deep to manage the first set of chemo. For me, the worst side effects were the extreme nausea, flu like symptoms and the loss of my hair which happened about 3 weeks after my first treatment.
I would get my treatments on a Friday morning and would feel pretty sick for the next few days but by the following Tuesday, I’d start to feel normal again. Each of the Adriamycin/Cytoxan treatments continued like that and I also noticed that I became progressively more tired over time.
Taxol interferes with the ability of cancer cells to divide. I received Taxol intravenously on a weekly basis for 12 weeks starting 2 weeks after my last Adriamycin/Cytoxan cocktail. I tolerated Taxol pretty well, with no nausea at all. My side effects from Taxol were weird things that happened to my fingernails and toenails, fatigue and numbness or neuropathy in both my fingers and toes. I was very relieved (and am very fortunate) that the neuropathy went away after about 6-9 months in both my fingers and toes.
My oncologist also told me about a site called chemocare where you can go and click on your particular type of cancer, then search through the various chemo regimens available for it, and read through them for details. There are even links to actual clinical studies and results.
Since I’m not a medical professional, I didn’t fully grasp all of the information, but it listed the drugs in each regimen, what their side effects were, % of people that experienced each of the various side effects, and the success rates. It was a piece of the puzzle that I found very helpful in making choices about my regimen above. Of course all of this can be very confusing and you’re sure not in the best frame of mind while you’re going through breast cancer, but for me, knowing I had access to this information gave me a much needed feeling of control during this time.
I’m glad I switched oncologists, I really like my current doctor. He’s helpful, empathetic, works with me as if we’re true partners and has a good sense of humor. Believe me, after all my hair had fallen out, my finger nails had turned black and sore, my toenails were starting to fall out and I was exhausted all the time, it was nice to have an oncologist who could make me laugh once in a while. I was very lucky to find a team of physicians that I could trust, it made a world of difference for me.
So, here I am on my soap box again: Be informed. Read everything you can. Be your own advocate! No one knows your body like you and you have the right to be an active participant in your treatment options.
Another gem, Claudia. You really should put it all into an actual book. It’s very good advice and you’re clear and concise in your writing.
I didn’t realize today was the day for the expansion and now I’m dying to hear how it went. I may try to call you–if you can’t or don’t want to talk, just say the word. Love you,and wishing you the best in this next step! xoxo
sue
I pinned this and shared everywhere I could. This is terrific Claudia, some very valuable information! I have watched my husband’s family go through so many different types of cancer and not survive, I am so glad that you did! What you are doing by sharing your story has undoubtedly saved lots of lives! I know that I now make my mammograms a priority thanks to you!
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I’m so sorry that your husband’s family has had so much cancer, Rena. I really appreciate you sharing this, as I can only hope to help other people trying to figure out this very complicated process — there are so many doctors to juggle, so many procedures to try to figure out and so many very serious decisions to make. Thank you for the positive feedback, it makes me feel so good to know that you are making your mammogram a priority because of me, thank you for sharing that with me! xoxoxox
Great information here, Claudia. Sounds like you and I underwent much the same chemo regimen. I knew quite a bit about chemo since my mom had it. But when it’s you and your body, well, that’s a whole different ballgame. I hated chemo and I hate that I still have some lingering side effects from it. Some day I hope there will be less harsh treatments. I wonder how long we’ll have to wait. Thanks for sharing. I’m sure this post will be helpful for those facing chemo.
Nancy’s Point recently posted…The PBS Documentary, “Cancer: The Emperor of All Maladies” – My Review
I’m so sorry that you still have side effects from when you had chemo. I think most of mine now, are from Tamoxifen and the surgeries, but they’re all getting blurred together in my mind. I hope, like you, that one day BC treatments will be much milder and more tolerable.
Excellent post! I wish I had been more involved in the decision making as far as my after surgery chemo & radiation treatment was concerned. I was basically told I would do TCH, Taxotere-Carboplatin-Herceptin, since I had HER2+. My oncologist said that it was a very aggressive & strong chemo plan, but that I was young & in otherwise very good shape & could handle it. And I did handle it just fine. It just never occurred to me to research different methods. Just kind of did as I was told. There seemed to be a big sense of urgency to get me started right away, since I had stage III with 4 positive lymph nodes. I also switched oncologists after I didn’t care for how the first one explained the chemo plan. So my surgeon got me with another, & I liked him & trusted him right away. He confirmed that the TCH recommended by the first guy was the way he would recommend too, & he did a MUCH better job of explaining things to me so that I could fully understand and know exactly what I was agreeing to.
Thanks for sharing this. It will no doubt help others be more empowered & proactive in taking part in their own treatment decisions.
I’m glad you were able to find an oncologist who you trusted, that’s so important. Best, xoxo
I had this regiment in 1996 as a clinical trial. I had a microcalcification that was close to my chest wall, became extremely painful, any clothing or bed sheets touching me cause extreme pain. I was told pain is not part of the characteristics know for breast cancer back then…in spite of what my doctor recommended, I knew my body and had it biopsied, it was hormone receptive invasive breast cancer all within a 1 centimeter diameter pressing on a nerve in my chest wall. After the biobsy, no more pain.
After the diagnosis, the next step was a mastecomy with reconstructive surgery using my own tissue from my lower abdomen prior to any chemo treatment so my healing will be expedient.
A month later I was on the protocol of adriamycin, taxol, and cytoxan regimen…it started with adriamycin for every two weeks for 3 cycles, then Taxol with the same times/cycles and finally cytoxan pumped into my chest port and monitored in the hospital during those same times/cycles. It was painful, exhausting and frightening. Emotionally upsetting and at times I felt as though I had my nose pressed against a window while I watched others go about their daily lives and wishing I were one of them as I was fighting for my life. I prayed a lot and God answered me…and I know He exists…I am proof, a miracle on two feet by God’s grace He carried me through my whole ordeal, surrounding me with love and kindness….wonderful doctors, nurses, relatives, new friends from my new job and my Church family.
My final exam with my oncologist I asked about radiation because it was mentioned when I first talked with her (always took notes when talking with doctors otherwise I knew I would forget due to the stress and the exhaustion of what I was to go through for treatment). She protested saying it was not part of the study, I said I do not care, I want to decide my life based on options not a study (wasn’t very nice of me, but it was my life at stake and didn’t want to leave no stone unturned even contacted an actuary to find out the multivariable statistics of this situation, which they kindly declined due to liabilities). So I eventually agreed with my oncologist after praying about it and the thought came to me that if I did have radiation that my cancer would be in favor of not returning by 20% meaning 80:20 rather than the expected 60:40 ratio. Except that as the probability increased to reduce the chances of breast cancer recurrence, so did the probability of getting leukemia increased by 10% from no percentage. I knew what it felt like to have low blood levels during chemo and the thought of any chance of having leukemia would be far worse than improving my changes for breast cancer recurrence. I felt if time was on my side that eventually if breast cancer did return, by then medicine would have changed drastically for better odds. So I took the high road and went with the 60:40 chances with no prospect of obtaining leukemia induced by chemo at a later date.
As I said, it’s over 20 years later and I am a survivor….extremely grateful for God’s hand on me. When I worried, I was reminded constantly about the poem footprints in the sand and was being carried. Also I had peace when I was carried, my thought was a win-win situation, if He takes me, I’ll be in His arms, if he keeps me here, then I have something still to do on earth and also thankful He is giving me this extra time.
Since then my life has been a walk of faith ….and I am thankful to be here to be able to write this now to share with others who may be as frightened now as I was back then at the start of this life changing journey.
BTW, the true love and kindness was a direct response to my prayer when I asked God for help on how to handle this difficult journey…very outstanding story behind that experience and the reason I know there is a God! However, I’ll leave that for another time since it would be beyond my initial intent to write about my chemo treatment.