Not tolerating Taxol.... ?'s about Taxotere

NOLA18
NOLA18 Member Posts: 4
in Breast Cancer #1

Hi!  this is my first post!  Was glad to find this site and great info being shared.

I have Stage 1 I.D.C. of my Left breast, Triple Positive, Lymph node negative. Mass was small <1cm,  Dx in Feb, had Lumpectomy in March, started Chemo in April.  I'm a mom to a 15 & 17yo, have supportive husband.  

MD prescribed 12 weeks of Taxol consecutively, along with Herceptin.  Radiation to follow and then Tamoxifen.  Last week cut my hair, falling out by handfulls, adjusting to wig & scarves.  

My first 2 treatments of the the Taxol went well, minimal side effects.  I'm still working full time.  Unfortunately, during 3 rd infusion of Taxol had hot flash/ Flushing, but it passed & was able to complete infusion.  Then 3rd & 4th attempt at Taxol broke out in rash/ Hives on my chest & neck.  Infusion was stopped, was given additional challenge of steroids, & Benadryl.  This week my md had me take Decadron by mouth 12hr prior to chemo, but it didn't help, hives still came on 10 minutes into infusion.  They have always given me IV premeds of Benadry, Pepcid, & Decadron prior to infusions.  So, I really received minimal Taxol on this 3rd & 4th attempt due to the reaction.  

Has anyone else experinced this issue ?  If so, how was your treatment plan affected?  The chemo nurse yesterday mentioned Taxotere as a possible alternative, she stated it has less preservatives than Taxol, and is a cousin of that drug.  However, reading post on this site I've learned of concerns with Taxotere, possible permananent hair loss and edema/ swelling issues.  

Of course, I'm worried where this new issue will take me along this journey.... I was so determined to power through these 12 weekly Taxol infusions, now a new hurdle to overcome!  Dissapointed, but will await to see what my oncologist suggest.

 

Strength & Hope for all!

Thanks, 

NOLA2018

Kiss

Comments

  • bonbondidit
    bonbondidit Member Posts: 116
    #2
    Hi Nola

    Hi!!! I had a huge reaction to Taxol but it was more in my bones. Super bad bone ache and red spots.  I was 44 at the time, 47 now and my nurse said for my age it was best to do weekly smaller doses than the three week dose.  He said patients over 60 can tolerate the three week version easier (most that is.)  So we went down to the weekly and no reaction. Go figure. I was originally suppose to do 4 rounds of Taxol every three weeks. It turned into spreading out the Taxol over a large period of time. It worked out well.  I have a lasting effect from it though during that first time. Neuropathy from knees down, weakness but I can totally walk juist have to use the best shoes out there and usually open toed or least amount of pressure shoes.  I'm alove and that's what counts for me and my family.  I used a half of a large bag o f Epsom Salt into a hot bath and soaked to reverse the painful side effect of the first taxol dose and it worked oddly really well whereas nothing else medicine wise did. 

    Hugs!!!

  • NOLA18
    NOLA18 Member Posts: 4
    #3
    jessiesmom1 said:

    Taxol and Taxotere

    I am surprised that Taxotere was suggested to you after finding that you are apparently allergic to Taxol. Both are in the Taxane  class of drugs. You might want to bring that up in your discussion with your medical oncologist.

    You mentioned the possible long term side effects of Taxotere such as permanent hair loss. I was, unfortunately, one of the people to suffer the long term side effect of excessively watery eyes (also called epiphora). My eyes water unless I am sleeping. I consulted 2 opthamologists before an oculofacial plastic and reconstructive surgeon determined that the little drainage holes in my eyelids (puncta) were damaged by the Taxotere. I was told this was an uncommon but definitely not unheard of Taxotere side effect. Very unpleasant. Just be forewarned. 

    All that being said, I wish you the best of luck on the rest of this journey after having a bit of a rough start. 

     

    IRENE 

     

    Taxene

    Irene,

    Thanks for your reply.  I'm sorry to hear about our eyes watering excessively, that must be challenging.  I wasn't aware of that possible side effect.  Thank you for bringing it to my attention.  I hope to be speaking with my oncologist soon, and I'll see what he suggest next.  Stay strong, 

    NOLA

     

  • NOLA18
    NOLA18 Member Posts: 4
    #4
    bonbondidit said:

    Hi Nola

    Hi!!! I had a huge reaction to Taxol but it was more in my bones. Super bad bone ache and red spots.  I was 44 at the time, 47 now and my nurse said for my age it was best to do weekly smaller doses than the three week dose.  He said patients over 60 can tolerate the three week version easier (most that is.)  So we went down to the weekly and no reaction. Go figure. I was originally suppose to do 4 rounds of Taxol every three weeks. It turned into spreading out the Taxol over a large period of time. It worked out well.  I have a lasting effect from it though during that first time. Neuropathy from knees down, weakness but I can totally walk juist have to use the best shoes out there and usually open toed or least amount of pressure shoes.  I'm alove and that's what counts for me and my family.  I used a half of a large bag o f Epsom Salt into a hot bath and soaked to reverse the painful side effect of the first taxol dose and it worked oddly really well whereas nothing else medicine wise did. 

    Hugs!!!

    Taxol

    bonbondidit,

    Thanks for sharing your experience with Taxol with my, i appreciate it.  I'm 49yo, hoping to talk with my oncologist soon and see what he suggest, since I seem to be allergic to the Taxol.  Thanks for the hugs!

     

    Stay Strong,

    NOLA

  • zebrainparadise
    zebrainparadise Member Posts: 9
    #5
    Rash on Neck

    I had a rash on my neck after my first round of chemo. We (both doctor and I) thought it was related to the Zarxio injections after chemo since the rash didn't show up until a week after chemo and into the injection time. After getting the rash twice, we stopped the Zarxio (my blood levels were good enough that I didn't have to substitute with anything else and risk another rash). However, I still got a rash - albeit not as bad - after the third and fourth chemo. While I['m sorry to hear that someone else went through the misery of the neck rash (and it was MISERABLE!), I'm kind of glad to hear it wasn't just me. My onco said she had never seen a rash like that before.

  • Apaugh
    Apaugh Member Posts: 850 Member
    #6
    Rash

    Oh those docs know that weird side effects pop up with any kind of chemo.  I once had a rash on my neck and trunk area.  Doc said, hmmm, never seen that before.  WHATEVERRRRR!  

    They gave me prednizone and it went away.  Knock on wood..it has never came back.   Just one of those things that happens. 

    Prayers going up for you for better outcomes,

    Annie

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #7
    Taxotere

    I had numerous side effects while on Taxotere (skin toxicity and edema) and have permanent hair loss in spite of being on the "lite" version, only 4 rounds..   Your cancer is more aggressive than mine was, in spite of the early stage.   I had Taxotere in 2010.   Would I do it again?  Absolutely IF I felt it was my best alternative.  I do believe that all chemotherapy comes with potential scarey side effects and I was warned about some, but not the permanent hairloss thing.  Had I been warned, I probably would have done it anyway.  It is rare and unfortunately I am one of the rare folks.  Bottom line, have a good long open conversation with your oncologist and ask about side effects.  Then decide.  Good luck

    Oh I also have some mild neuropathy.  Not enough to write home about, but it's there.

    Suzanne

  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
    #8
    Taxol and Taxotere

    I am surprised that Taxotere was suggested to you after finding that you are apparently allergic to Taxol. Both are in the Taxane  class of drugs. You might want to bring that up in your discussion with your medical oncologist.

    You mentioned the possible long term side effects of Taxotere such as permanent hair loss. I was, unfortunately, one of the people to suffer the long term side effect of excessively watery eyes (also called epiphora). My eyes water unless I am sleeping. I consulted 2 opthamologists before an oculofacial plastic and reconstructive surgeon determined that the little drainage holes in my eyelids (puncta) were damaged by the Taxotere. I was told this was an uncommon but definitely not unheard of Taxotere side effect. Very unpleasant. Just be forewarned. 

    All that being said, I wish you the best of luck on the rest of this journey after having a bit of a rough start. 

     

    IRENE 

     

  • Godismystrength
    Godismystrength Member Posts: 4
    edited September 2018 #9
    Taxotere

    There is a site called Chemocare that tells you what the drugs do and what they are made of.  Taxol and Taxtere are made of the same plant substance, like periwinkle and Asian Happy Apple.  If this is an allergy, why wouldn't you be allergic to both?

     

    What did you end up doing?

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