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Kahm's avatar
Kahm
Member
4 years ago

No response to paclitaxel - anyone else?

Hi all,
I was dx with early BC in August this year. I turned 40 this year.
It's a grade 2(ish) invasive ductal. Hormone +ive, HER2 -ive.

Because it was in my lymph nodes, my treating team wanted me to do chemo first (4x AC dose-dense, 12x weekly paclitaxel). I'm on the 4th pacli cycle (it's infusing as I type!)

I had a progress ultrasound last week and when I spoke to my onc yesterday, he was a tad concerned that the tumour doesn't seem to be responding to this drug. He talked about maybe stopping this drug and going straight for surgery and hormone therapy.

The chemo nurses assure me that people change treatment regimens all the time, and I tell myself that monitoring and reassessing is a GOOD thing. But I'm still in a dither. Also, every twinge, niggle, and sensation anywhere near ol’ leftie has me jumping out of my skin in panic, convinced that the end is nigh.

So my questions to you all:
Has anyone else been in the same situation?
On a scale of 1 - 10, where 10 is Beet-faced-embarassed, how silly am I going to feel about this anxiety in a week or so?
Is there anything I should do to get prepared for maybe having surgery(?) in the next few weeks? I had totally bumped that down the road as a problem for 2022!

TIA!
  • Hi @Kahm, hope your surgery goes well and you are ok. Sending you a hug 💐
  • My oncologist decided that the paclitaxel isn't working as much as he would like.

    So I'm off for another PET scan tomorrow and then surgery next Wednesday.

    The hope is that all the chemo I've done to date will let me keep some of my lymph nodes. My luck to date hasn't been great though, so I'm pretty much expecting to wake up on Wednesday evening minus boob AND lymph nodes. Sigh. 
  • Thanks to you both 😍

    I've since spoken to a breast care nurse who said that she has a decent number of patients who have found that paclitaxel makes the affected breast/s ache, twinge, or hurt. She said that those sensations can be a sign of the chemo working and the fact that it's similar sensations to the cancer growing messes with everyone’s head.

    She also suggested that if I stop poking the lump in the hope that it's shrunk, my boob might hurt less 😂

    I checked it for size last night and it's been PAINFUL all day. I don't know what that means, but I'm hopeful its a sign that the cancer cell are “in distress”. Humph.

    I'm off to see my surgeon on Wednesday...
  • @Kahm bit long winded but 
    The plan for me was same as yours
    My tumour was attached to the skin, the muscle and to the sternum i got to 8 weeks into the paxil and the treatment was stopped and off to surgery 2 weeks later.
    my tumour didn’t do much shrinking either
    Everyones treatment is planned with the best of intentions. 
    The fear and worry is real and normal. There wouldn’t be one person in this club/network that hasn’t felt it. There is no beet-faced embarrassment about it. 
    I didn’t do too much to get ready
    gathered my crew for drop off pick up etc i only stayed in overnight.  Best advice i got from here was loose clothing i chose front opening soft shirt a size bigger than i normally wore along with light pants 
    Good luck with your surgery you should be given the information about what to do for after surgery recovery before you leave the hospital. 
    The exercises following are important especially as there is lymph involvement  have someone there for the discharge run down 
    Take all the offers of help at home 
    And keep us posted

  • I haven’t been in your situation but anxiety is very real especially when things don’t turn out according to the book. And that of course is why you can, and possibly should, make a switch. Remember many patients do things the other way round, surgery first. There is now a lot of interest in reducing a tumour as much as possible first, which is sensible if it significantly reduces the amount of surgery required, but it’s not the only way to go. And you are not being silly, just normal! Surgery is usually very straightforward, may require more preparation if you plan reconstruction straight away. Rarely painful although lymph node removal may jangle nerve endings in the underarm for a while. Best wishes.