Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Weekly Taxol group

1184185187189190426

Comments

  • rainnyc
    rainnyc Member Posts: 801
    edited January 2016

    CarolinaAmy, this is the beginnings of neuropathy. It may not get worse, but I'd call the MO's office just to check in about it. They'll want to know.

    I got that symptom after the 11th treatment. It never spread beyond the toes and part of the ball of one foot. Most of the time I'm not aware of it at all.

    But even so, I'd say let the MO know about it.

  • VickiRides
    VickiRides Member Posts: 163
    edited January 2016

    CarolinaAmy, definitely let your MO know. I had tingling in my finger tips and they were able to adjust the Taxol dose to stop it from getting worse.

  • CarolinaAmy
    CarolinaAmy Member Posts: 215
    edited January 2016

    rainnyc and VickiRides, did it eventually go away??

  • rainnyc
    rainnyc Member Posts: 801
    edited January 2016

    CarolinaAmy: It got worse for a few weeks (at first it was just the toes, then spread to the ball of my foot). Some of the toes have gotten better, but it hasn't gone away completely. I'm about 4 1/2 months post Taxol. I honestly don't notice it unless I'm barefoot or I'm thinking about it.

  • CarolinaAmy
    CarolinaAmy Member Posts: 215
    edited January 2016

    Thank you for sharing your experience, rainnyc. I'll definitely mention it to my MO before Tuesday's infusion.

  • teach6
    teach6 Member Posts: 16
    edited January 2016

    Looking for help with dealing with muscle, joint and bone pain after Taxol infusion 3/12. Warm baths, Claritin, Aleave, extra strength Tylanol, and Hydrocodine barely touches the dull to intense pain. Infusion was Tuesday and still having problems getting past the pain. Will this continue to get worse with each infusion- so far it has...


  • trvler
    trvler Member Posts: 931
    edited January 2016

    Some of us used Glutamine for the tingling/numbness. I did 1x a day. Some did 3. Some studies show it grows cancer. Check with your doctor. I have numbness but I get occasional tingling still.

  • Karenbo
    Karenbo Member Posts: 19
    edited January 2016

    Sorry you are hurting Teach6. Hot showers, a heating pad and sometimes a muscle relaxer has helped me when I have joint and muscular pain/spams. Mine is mostly associated with the Neupogen injections that I take the 2 days before Taxol....


  • tesla
    tesla Member Posts: 32
    edited January 2016

    Quick question, with monthly herceptin, do you need chemo port for it? Does herceptin damage your vein?

  • MsBrompton
    MsBrompton Member Posts: 324
    edited January 2016

    Tesla: No and no, in my experience.

  • homeschool4us
    homeschool4us Member Posts: 74
    edited January 2016

    Teach6, I get the aches some weeks and not others. I have no idea why. So, I defintely wouldn't say it gets worse. Ibuprofen helps me.

  • ForestCalm
    ForestCalm Member Posts: 3
    edited January 2016

    I want to thank all you ladies for being so inspiring. I have been so sleepy on Taxol that I barely want to work (I sleep sometimes 12 hours at night and then need a two-hour nap in the daytime!), even though my job requires me just to work on a computer in my home office, and is not at all physical. Seeing that some of you are going in to jobs that require interacting with people, many phone calls, standing, etc. has made me decide that as soon as I finish posting this, I'm going to get back to work! And I'm going to feel grateful that I can work at home doing something that doesn't require walking (I have the shortness of breath others have discussed).

    Jodi, a note to you. I agree that you made the right decision, not that it is my place to say so. One of our sons, aged 15, is severely autistic and can be violent. Even when he's happy (most of the time), he requires energy and strength for everything from baths to diaper changes to dealing with him sitting on my lap (he's taller than I am but he still thinks he's a toddler!). My husband and I just have one autistic child, and two other sweet kids. A roomful while dealing with chemo, even with co-workers present... I can't imagine. Not that all kids are the same, and you didn't mention autism anyway. But those of you who choose to help our special kids, who have patience with them every day, are just incredible people to me. I sure hope you allow yourself to be as giving to you as I bet you are to your students, and continue to let yourself recover before going back to work.

    Cheers to all of you, and thanks for inspiring me!

  • jodes001
    jodes001 Member Posts: 54
    edited January 2016

    ForestCalm- I do work with many children with Autism. Thank you so much for the kind words!! Heart

  • Sawyer
    Sawyer Member Posts: 33
    edited January 2016

    Hi all;

    So I have 2 Taxol's down and tomorrow is #3. I am doing weekly. Thank you for the hints/comments above.

    Now that I have 2 down I can comment: my nose is always running and I have had the scabbing and bloody noses from time to time as well; it clears up but the running continues. Some say it may be related to the lack of hair in the nose. I lost my hair before AC #2 but my eyebrows remain...I am thinking the Taxol will take those away soon.

    I am having exhaustion, muscle aches, and some neuropathy. No nausea or vomiting though and my appetite seems better than on the AC. I am trying to continue working but have had to take a couple days off after treatment; I am definitely more tired on this than the AC.

    My MO suggested 100 mg / day of vitamin B6 to help with the neuropathy. i still feel it but am assuming its less with the B6.

    I am now a bit anemic with my Hgb and Hct being low so we are upping the iron rich foods at home.

    Love the New Years photo above you are beautiful! its funny when i first lost my hair i didn't want anyone to see my bald head; now i am much more comfortable and enjoy the comments from people when they tell me i am beautiful :) I think our hair distracts others from our beautiful faces.

  • VickiRides
    VickiRides Member Posts: 163
    edited January 2016

    CarolinaAmy -- The tingling seemed to stay the same for a couple of weeks, then lessened. I was also having fingernail pain. I'm now almost 3 weeks PFC and already its much better. The fingernail pain is completely gone and there's just a slight tingling sensation. I'm still taking L-Glutamine and I get acupuncture to help with the SE.

  • homeschool4us
    homeschool4us Member Posts: 74
    edited January 2016

    Sawyer, it sounds.like you and I are having the exact same experiences with weekly taxol. The only difference being I haven't noticed any neuropathy yet. I have #7 this Thursday.

  • homeschool4us
    homeschool4us Member Posts: 74
    edited January 2016

    I don't have the energy to search back. . .When did the nail problems and or neuropathy start for everyone that got them?

  • VickiRides
    VickiRides Member Posts: 163
    edited January 2016

    I think I started noticing the neuropathy around week 6. It was very mild tingling. The nail pain started a few weeks later.

  • Sawyer
    Sawyer Member Posts: 33
    edited January 2016

    I hadn't heard about the nail pain! I have only had 1 Taxol; tomorrow is #2 and the very mild neuropathy started a few days ago. its not constant. I noticed the feet when I woke up in the night and the fingers throughout the day. No pain though just tingling. The muscle pain started the day after #1 and has been pretty regular. I would only say it was really holding me back on a day I tried to do too much and then the next day it had me home from work early.

  • VickiRides
    VickiRides Member Posts: 163
    edited January 2016

    I hadn't been warned about nail pain either, and it caught me by surprise. Keeping my nails short helped a lot with the pain, and they are back to normal now.

  • FightForMom
    FightForMom Member Posts: 4
    edited January 2016

    I am joining this group in hopes to find help or answers for my Mom... I hope that's okay. She completed 12 weeks of taxol with herceptin (1treatment a week for 12 weeks) and will continue Herceptin alone to complete a year. Her last Taxol treatment was November 30. She did so well... only minimal side effect. She was just starting to feel a little better then suddenly about 3 weeks ago has gone rapidly downhill. She is always dizzy and lightheaded, has the bad taste in her mouth again, is confused all the time and has forgotten how to do the simplest things like changing the tv channel. She has had a CAT scan and MRI of her brain and spine. Everything was clear. Please.... can anyone help with any suggestions, advice, experience?

  • lvbugs
    lvbugs Member Posts: 35
    edited January 2016

    I'm not sure how old your mom is, but what your saying maybe symptoms of a UTI. Symptoms like that show in the elderly.

  • tesla
    tesla Member Posts: 32
    edited January 2016

    Routine Heart Echo with Herceptin still normal for your mom?


  • FightForMom
    FightForMom Member Posts: 4
    edited January 2016

    Thank you for the info! I looked up UTIs in elderly females and the symptoms sound so much like what she has!! I am so excited to tell my dad we need to get her checked for that. Im crossing my fingers thats what it is. Thanks again.

  • FightForMom
    FightForMom Member Posts: 4
    edited January 2016

    Yes. She goes for mug a scans every 3 months. Its so frustrating not knowing what is causing this!

  • moderators
    moderators Posts: 8,643
    edited January 2016

    FightForMom, keep us posted!


  • FightForMom
    FightForMom Member Posts: 4
    edited January 2016

    Thank you... I will. I am so excited (sounds very strange) she took a home UTI test and it was positive!! We are waiting to hear from her doctor. I am hoping and praying this is the only problem.

  • ladyhumps
    ladyhumps Member Posts: 56
    edited January 2016

    FightForMom I hope this is what it is. Praying too. Glad you got such a quick reply, too.

  • Sawyer
    Sawyer Member Posts: 33
    edited January 2016

    Thank you VickiRides I will keep my nails short and hope for the best! I saw the MO yesterday and discussed the muscle and joint pain... All normal I guess. Kinda bummed though the high doses of the steroid have me gaining weight :


  • VickiRides
    VickiRides Member Posts: 163
    edited January 2016

    Sawyer - Between messing up my sleep and gaining weight, I really hated the steroid. My MO cut the dose in half, then half again and finally dropped it altogether when I wasn't having any allergic reaction to the Taxol. I'm sorry to report that the weight gain didn't stop. I'm 3 weeks PFC now and I finally feel like my eating is under control again. And the scale moved down this week!