Forum Discussion

Paulamarie's avatar
Paulamarie
Member
8 years ago

Triple negative breast cancer

hi everyone just wondering if anyone has had to stop taxol treatment due to side effects. 
Inwas diagnosed with TNBC in Oct 2017.  I have 3 months AC, then started taxol 7 weeks ago. I had a reaction first 2 weeks. Then it settled down. I went in today for week 7 and they decided not to give taxol to mr today as my feet are numb on the bottom of my foot. My finger nails feel like they have been slammed in a door. I see my oncologist on Tuesday to see what they will do. The nurse said I may have to stop. They may bring my surgery forward. Etc etc . Obviously me and taxol don't get along. But apparently TNBC responds really well to taxol. 
I had talked my self into 12 weeks  taxol. Surgery radiation. That's was the plan. A bit confused  at the moment. 
Has as anyone else had this happen to them??? 

Also how do I talk to a breast care nurse or do I just ring the hotline?

Thanks 

regards
paula

7 Replies

  • volunty's avatar
    volunty
    Member
    8 years ago
    Paulamarie said:
    @volunty thank you for sharing your journey as well. I didn't realise ther her grades. I got told what might happen yesterday and walked out of the hospital a mess. I didn't realise how much I was relying on taxol or the process. In my mind I have five weeks left. I will see what happens on Tuesday. 

    You mentioned that you have finished your 12 week taxol. Are you having surgery or did you have it before?? 

    Hope your don't have to wait to long for the feeling to come back in your hands.  
    Hi @Paulamarie I had a lumpectomy which cleared the tumour (3 cm Grade 3 and aggressive) but there were several very small areas of DCIS close to the margins so single mastectomy very soon after and then chemo to finish up. Neoadjuvant chemo was considered at the start but rejected so basically August 2017 diagnosis through to now. I'm taking part in the IN FOCUS study which is looking at the neuropathy side effect of chemo to find better guidelines (genetic, age, other) for who is likely to be affected badly and when to stop or alter treatment if necessary. Responses (tactile, pressure, balance) and nerves were tested in my hands and feet prior to chemo, half way through, and again next week post chemo. Does't change my situation but hopefully will help in future. Good luck, try not to worry and  hang in there one dose at a time! 
  • Paulamarie's avatar
    Paulamarie
    Member
    8 years ago
    @Afraser thank you for sharing your story. I I'd feel robbed yesterday . I wanted that taxol for the  12weeks. I well see what he oncologist says Tuesday. Take care .
  • Paulamarie's avatar
    Paulamarie
    Member
    8 years ago
    @volunty thank you for sharing your journey as well. I didn't realise ther her grades. I got told what might happen yesterday and walked out of the hospital a mess. I didn't realise how much I was relying on taxol or the process. In my mind I have five weeks left. I will see what happens on Tuesday. 

    You mentioned that you have finished your 12 week taxol. Are you having surgery or did you have it before?? 

    Hope your don't have to wait to long for the feeling to come back in your hands. 
  • Paulamarie's avatar
    Paulamarie
    Member
    8 years ago
    I had to stop Paxitaxel after 6 treatments as I had grade 4   I am alive and cancer free 5 years later .....  when your oncologist makes the choice about continuing or ending taxol treatment they often give another treatment. 

    @Paulamarie one of the things we learn on this Roller Coaster Ride is that there are stops on it we dont plan for ..... 

    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

    It can be a a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    The what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258.  The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

    @SoldierCrab thank you for the information very helpful didn't realise ther where different grades. I will see what the oncologist says on Tuesday. It is a roller coaster. Glad you are cancer free after 5 years. Tank you again
  • Afraser's avatar
    Afraser
    Member
    8 years ago
    I nearly stopped Taxol but didn't (discovery of a lump under my right arm as much as anything - benign and unrelated, but it rang the "what if..." bells pretty loudly). I don't regret my decision but my feet are still affected 5 years later. Usually neuropathy will slowly clear up but it can linger. Your oncologist is in the best position to outline your options. Remember that a partial dose still has some therapeutic benefits. See how you go when you meet and what she/he suggests. Best wishes
  • SoldierCrab's avatar
    SoldierCrab
    Member
    8 years ago
    I had to stop Paxitaxel after 6 treatments as I had grade 4   I am alive and cancer free 5 years later .....  when your oncologist makes the choice about continuing or ending taxol treatment they often give another treatment. 

    @Paulamarie one of the things we learn on this Roller Coaster Ride is that there are stops on it we dont plan for ..... 

    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

    It can be a a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    The what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258.  The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

  • volunty's avatar
    volunty
    Member
    8 years ago
    HI @Paulamarie - I had neuropathy kick in at about Taxol 6 or 7. At No 10 I was concerned but my oncologist kept an eye on it - it's graded from 1 to 4 and he said mine was Grade 1. I finished all 12 (no 12 was this week) and my toes are numb and fingertips very sensitive esp in the morning. Nails very short helps avoid pressure on the tips. I don't like it but can live with it, apart from sending the occasional glass flying with clumsy hands, and am just hoping that it will wear off asap. Your oncologist is the one who makes the call, or helps you to make the call,  if the neuropathy is becoming risky for you now or in future. (I'm also TNBC btw)