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AC Done, Terrified of T!

ohheyitsaj
ohheyitsaj Member Posts: 5

I finished my last round of AC (adriamycin/cyclophosphamide) and I’m scheduled for my first round of paclitaxel this week… and I’m terrified. I have a huge fear of allergic reactions and I keep seeing people post about how they had reactions to Taxol and couldn’t breathe. I’m also scared of neuropathy (I’m an artist, I need to feel my fingers!) and I’m having so much bone/joint/muscle pain from the Lapelga shots that I’m petrified of the paclitaxel because people keep saying it causes them bone and joint pain. Im really, really anxious about it, to the point that I’m ready to call it at the halfway point and move on to radiation.

What was your experience with paclitaxel like? Did you have a reaction? How were your side effects compared to the AC (if you had it)

Comments

  • lw422
    lw422 Member Posts: 1,375
    edited April 2023

    I had Taxol first, then AC. In my experience, Taxol was much, MUCH easier to tolerate than AC. The chemo nurses should be monitoring you closely, particularly for the first infusion. I iced my hands, feet, and sucked on ice chips during infusion to help reduce the chance of neuropathy and thankfully I don't have any. My chemo was in 2021 and as far as I know I've had no lingering SEs. Good luck to you. You can do this.

  • mountainmia
    mountainmia Member Posts: 857
    edited April 2023

    I was scheduled for Taxotere (a cousin of Taxol) and Cytoxan. I reacted to Taxotere. After multiple attempts, my MO switched me to AC only. Yes, it was a bit scary, but I was well monitored during the infusion attempts. At the very first sign of a problem (I was too warm), the chemo nurse called for help. Within seconds there were probably a dozen nurses around me. They took great care of me and I never felt in danger. After the first one, the MO changed the routine to try to make it tolerable for me. It wasn't, but again, I never felt in danger at all.

    I would encourage you to talk to your MO and agree on a plan of action. I don't know your disease profile (it doesn't show) and I'm no doctor, so I can't tell you what's appropriate. Maybe it's reasonable to have 6 instead of 12 infusions, or some other number. You won't know if you don't have that discussion. Good luck.

  • ohheyitsaj
    ohheyitsaj Member Posts: 5
    edited April 2023

    @lw422 - thank you! I’m already having problems with mouth pain so I’ll have alllll the ice chips I can get during the Taxol!

    @mountainmia - I have ER+/PR+/her2- invasive lobular carcinoma. They said stage 2 but after my double mastectomy, the pathologist changed it to stage 3 due to the size of the tumour. I had clean margins (got it all!) and one out of three lymph nodes had cancer cells when they did a sentinel lymph biopsy. I talked to my MO and her feedback was “you won’t be giving yourself the best care of you quit early”, but it was a hard sell for me to even do the chemo in the first place (it feels like maybe a bit of overkill? They got the whole tumour but want me to do chemo plus more surgery to remove all lymph nodes plus radiation plus Tamoxifen) - ugh, I’m just so nervous about the Taxol that it’s making me feel sick

  • mountainmia
    mountainmia Member Posts: 857
    edited April 2023

    The surgery and radiation are for cells that were within your breasts and local lymph nodes. Chemo is for any cells that may have escaped into your body. If your tumor had been smaller and/or there'd been no evidence of cancer in your sentinel lymph nodes, not having chemo at all might have been a fair choice.

    That said, you are the decision maker. I still encourage you to have the discussion again with her. Consider trying it. Maybe the first infusion will go easily and you'll decide you can do another. With icing people have good results on avoiding neuropathy, so see if you can tolerate the icing process. My point is, you don't need to make a contract for the whole thing. You can decide infusion by infusion whether or not you can do another. Maybe you'll get four under your belt and then call a halt. Maybe it will be six or seven. Each one you can manage will give you a better probability of avoiding distant (stage 4) recurrence.

  • maggiehopley
    maggiehopley Member Posts: 97
    edited April 2023

    I had no problems with Taxol. I iced my hands and feet, and although I did get some slight numbness in my toes and the tips of two fingers it went away right after treatment, and I never had any actual problems using my fingers. I had no pain of any kind. My side effects were fatigue and queasiness, but I never threw up. Surgery gets the cancer cells in the breast and lymph nodes, but chemo kills the cells that have escaped into your body that are undetectable. I got steroids, pepcid, and benadryl as premeds and if you are having side effects your MO can adjust your premeds to help.

  • threetree
    threetree Member Posts: 1,156
    edited April 2023

    I found Paclitaxel (Taxol) to be much easier than AC. I did not ice anything and I do have what seems to be permanent residual off and on tingling in my hands and feet. But as someone else here has noted, the nurses should be monitoring this at every session and asking you how your are doing in this regard. If it gets to or beyond a certain point, they are supposed to stop the treatment. If you decide to do this, be sure to let them know any and all tingling and/or pain that you start to get in your hands and feet - it gradually creeps up the limbs. There is a point where it's not OK and they stop. I did the whole regimen and do have this residual permanent stuff, but it really isn't too bad - tingles off and on, but no real pain to speak of. I don't like it, but hopefully in the long run I did more good than harm by getting the Taxol.

  • ohheyitsaj
    ohheyitsaj Member Posts: 5
    edited April 2023

    I just wanted to thank you guys for your responses and reassurances. I did my first round of the paclitaxel yesterday and I’m very happy to report that I was reaction-free! My biggest fear did not come to life. :)

  • kotchaj
    kotchaj Member Posts: 205
    edited April 2023

    I'm so glad that you made it through your first treatment. Half of what we experience is worry.

    I noticed with T that at the end, I was pretty dang wiped out, and my onc did dose reduce me.

    I always say I can do anything for a short amount of time. Hang in there.

  • jh40
    jh40 Member Posts: 139
    edited April 2023

    ohheyitsaj - consider using ice gloves/booties on your feet and hands for Taxol. It prevented the neuropathy for me in both my hands and feet, but I did develop it very, very lightly in my shins, which is unusual. It also keeps the nail beds from lifting/falling off.