I'm Back after 16 years!

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chuckee1104
chuckee1104 Member Posts: 12
edited February 2022 in Diagnosed and Waiting for Test Results

Well, here I am again. First diagnosis was 2004, ER+, PR+, Her 2+, chemo (Adriamycin/Ctyoxin/Taxotere, Herceptin), radiation, removal of scar tissue (and breast lift) 5 years ago. Now new cancer ER-, PR-, Her2 2+ waiting for FISH results and PET scan. I was hoping to have the option to use the immuno onc drugs which seem easier, but may need to go back on the "Red Devil". I was told by a nurse practitioner, that I should get a different treatment if I previously had the first 3 due to risk of cardio toxicity. My Onc (who is the same as 16 years ago and is wonderful) says that it really depends on my echo gram which is being scheduled. Just wanted to hear from other treating physicians, what is the normal treatment for Triple Negative if AD/CY/TX were previously used.


I've already wrapped my mind around this chemo thing again. As my oncologist says, "I'm experienced":-).

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  • moth
    moth Member Posts: 4,800
    edited January 2022

    I'm sorry you find yourself here again

    protocols for triple negative are being rewritten as we speak. carboplatin + taxol + Keytruda is what I see most often, with or without xeloda/capecitabine for a year after depending on risk stratification. I suggest you have a look at this thread https://community.breastcancer.org/forum/72/topics...

    and make sure your oncologist is looking at the very latest guidelines for TN as it's literlly changed just in the past 6 months or so...

    fingers crossed for good PET results

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  • chuckee1104
    chuckee1104 Member Posts: 12
    edited January 2022

    Thank you for the information. Just found out that I am Her2+, so different treatment altogether.. PET was good. Getting ready to start right after port placement on Friday. Now wondering about the treatments and how they will affect me.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited January 2022

    chuckee,

    Ugh, sorry to hear that you're back after 16 years. Lucky you, there are some new HER2+ treatments since you last were here -- Perjeta, Kadcyla, Enhertu, Nerlynx. I'm not sure you'd do full-strength AC again -- that's got a lifetime limit. Hope you figure out your treatment plan soon! ((Hugs))

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2022

    Chuckee, we're so sorry you're back, and dealing with this new diagnosis. Please, remember that If you need us, we're here to help.

    Best wishes,

    From the Mods

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  • Elderberry
    Elderberry Member Posts: 993
    edited January 2022

    Chuckee: I am sorry that you have to return to Cancerlandia after 16 years. It must be such a shock. HER2+ has options. Is Herceptin/Perjeta on the table for you?

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  • chuckee1104
    chuckee1104 Member Posts: 12
    edited January 2022

    Treatment plan is Taxotere/Carboplatin and Herceptin/Perjeta. My fingers and toes are still numb (neuropathic pain) from the Taxotere. Are these drugs going to take my hair out again? Wondering what to do about my diet. Is there a place to go here where I can find more details. I guess I'll get the deep powder taken off my nails. Last time they separated from the nail bed.

    Thanks for your assistance. Really appreciated


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  • Sun-Shine
    Sun-Shine Member Posts: 30
    edited January 2022

    Hi Chuckee - Sorry to hear you are back after 16 years. Many people use DigniCap, Penguin Cold Caps or other cold caps to save some of their hairs successfully during chemo treatment. You may give a try if you want. You can find lots of useful information on this website shared by other people.

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  • Jasmin2020
    Jasmin2020 Member Posts: 11
    edited January 2022

    chuckee1104 So sorry you are back on this forum after all these years. Glad to hear your PET scan was good. I am also ER/PR negative and HER2 positive. They caught it early so I only had to do weekly Taxol for 12 weeks and Herceptin for a year (after the double mastectomy). About hair loss, I had great success with the Paxman cold capping system. I kept most of my hair. They have a Facebook group that has been a wonderful source of information and inspiration, Paxman Scalp Cooling Group , I would highly recommend checking it out. Best of luck to you, sending lots of positive vibes!!!!

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  • Blinx
    Blinx Member Posts: 280
    edited January 2022

    Chuckee1104 - It stinks, doesn't it? I managed to make it to 14 years without a recurrence, and then boom! At least last time I didn't have chemo. This time around I have a mixed bag of pos/neg. AC for 4 treatments, then taxol/heraceptin for 12, with perjeta every 3 weeks. Almost went on the immunotherapy until they found out the HER+ bit. But so glad that there are many new options along with the old standbys. The old drugs are nothing to sneeze at either -- they're still quite effective. At least this time, additional drugs like Emend make chemo more doable. Hopefully you'll be on your way to starting treatment soon.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2022

    I am so sorry you are facing this again. My dx was 2005, and my onc said I was “basically cured,” but here I am on here researching again as I am facing a lung nodule that my PET scan didn’t like (5.0 SUV uptake). So I wish you all the best, all the hugs, all the support, all the good wishes that you can tolerate. 🙂

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  • OlympicMtGirl
    OlympicMtGirl Member Posts: 19
    edited February 2022

    Clearly a surprise.With your docs, the forum, and your strengths and skills, you got this.

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