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Inflammatory BC - Triple neg - chemo, rad then surgery

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  • EBBA12
    EBBA12 Member Posts: 36
    edited May 2021
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    NatureYogi - Wonderful News - Lymph nodes are disappearing.

    Starting Taxol tomorrow - Great - does DD - stand for double dose) - I know 4 is rounds? Yes you are half way there. Prayers and Hugs for support.

    Yes probably and MRI or CT scan before surgery. BS would know more? You might have radiation after surgery since you are having a good response to chemo?

    Sorry cant remember - small bumps but mine was red and swollen through my treatment, Need some help - When did the bumps start? - Where are they located? How much of an area does it cover? - Did your BS seem them? Maybe show it to your MO or NP tomorrow and or infusion nurse? They would more helpful. 😇 EBBA


    LW422 How are you going??? 🙏 💪 AIR HUGS EBBA

  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Hello everyone. I'm feeling particularly tired today; I slept late and felt like I could have just stayed in bed... I have run out of "juice." My ultrasound got rescheduled for next Wednesday since my MO wanted it when I was done with Taxol, so I didn't have it this week after all.

    My best to all of you; hope you are feeling OK and handling any SEs.

  • EBBA12
    EBBA12 Member Posts: 36
    edited May 2021
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    pchyen - I have phone meeting with nutritionist on 5/12. How is Nicole holding up with treatment❓

    LW422 glad you are ok, we were worried...sorry you have been really tired, your body needs rest, remember to stay hydrated💦. Yes having ultrasound after 4 treatment of Taxol. Keep us posted.

    HAS ANYONE heard of Taxotere causing permanent hair loss or just eyebrows and eyelashes not growing back. My hair just started to grow. And the idea of loosing it again so soon for 6 months...ending treatment in January...read below.

    I met with MO I need a full body PET SCAN. next Friday hopefully if not tomorrow would be ideal if i can be squeezed in insurance approval. Since FISH came back HER2 positive, MO is looking at HERCEPIN + PETRUDA as antibody drug, but he is thinking of also adding chemo drug TAXOTERE. 😇EBB

  • pchyen
    pchyen Member Posts: 96
    edited May 2021
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    Hi EBBA, Nicole is doing much better the last 2 days. We are a week out from her chemo, she didn't have to take anti-nausea meds today andonly took 1 Zofran yesterday. The only complain she has is the bone pain around the hip areaand muscle/joint ache from WBC booster shot.

    Taxotere *may* cause permanent hair loss, just like AC chemo *may* cause permanent heart issue. Also, Herceptin has side effect which *may* cause heart issue as well like AC. Unfortunately it's risks we are all told.

    For Taxotere, you can mitigate permanent hair loss with cold capping (even if it can't save your hair).

    Apparently Herceptin and Perjeta works better along with chemo drug. Nicole is HER2+ (IHC 3+) and she will be getting H+P along with Taxol (not Taxotere, as she is doing AC treatment).

    Head over to HER2+ section :) there are some good info as well: https://community.breastcancer.org/forum/80. There is a thread ER-/PR-/HER2+. And Looks like you will lose the exclusive TN club status!

  • EBBA12
    EBBA12 Member Posts: 36
    edited May 2021
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    pychen thanks for all the advice.

    I tolerated AC well after the 3rd treatment, first two were harsh....I don’t seem to have heart issue but who knows. I had taxol, it did not do much for me. I will have to wait to see what the tumor board says As far as treatment, believe they meet next Friday.

    My infusion place does not offer cold capping...I understand if you do it on your own it could be quite expensive and most people are not vigilant enough for follow through. Taxotere was approved in 1996 which is a very symbolic year so y e I wil” be one of the lucky ones. EBBA

  • NatureYogi
    NatureYogi Member Posts: 135
    edited May 2021
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    LW422,

    That is frustrating to have to wait for ultrasound, but atleast you will be done with the Taxol and they will get an idea of response. I had my first Taxol, it wasn't bad, the benadryl knocked me out though. I have 3 DD (dose dense) treatments left and then scans to see what kind of response. Hopefully I get the surgery before radiation.

    EBBA, How are you feeling?

  • EBBA12
    EBBA12 Member Posts: 36
    edited May 2021
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    natureYogi taxol 3DD is that every 2 weeks or weekly? EBBA

  • lw422
    lw422 Member Posts: 1,403
    edited May 2021
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    Hey NatureYogi. I've had mixed emotions about the ultrasound... on one hand I want to know if the chemo is working, but on the other hand I'm terrified that it isn't!! I think the "emotions of cancer" are what makes it so hard to take. I'm glad you're doing OK with Taxol; I didn't have DD but found it surprisingly easy. My last Taxol is tomorrow. I don't get benadryl; just a steroid and Taxol. Next week will be AC and I'm really dreading that.

    EBBA--how are you healing from surgery? I hope you're feeling OK, and I hope the PET scan goes well for you.

  • NatureYogi
    NatureYogi Member Posts: 135
    edited May 2021
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    Hello! Taxol every two weeks. I know when it comes time for my scan, I'll have anxiety. And then you have to wait for results!

    Hang in there and let us know how ultrasound and AC goes.

  • mamacure
    mamacure Member Posts: 256
    edited June 2021
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    How’s everyone doing here? Thinking of you all. Last 2 Abraxane (protein coated Taxol) went well. I was resting early am, browsing summer clothes on Amazon in bed when my nurse called to come in for xtra blood work. RBC down so they wanted to re-do labs. Last infusion was yesterday. Been drinking ton of iced tea, it goes against iron absorption. Ugh. But Onc said it’s Keytruda that may attack my RBC. Lab work was ok so I avoided blood transfusion today (thank God). Had bone broth and some beef today as per natural path Onc

    Next week is Abraxane + Keytruda so hope I’ll be ok. Scared of blood transfusion.3 more weeks then echo gram, MRI, surgery consult then 4 rounds of AC before surgery.

    Hang in there try to enjoy the weekend everyone!

  • NatureYogi
    NatureYogi Member Posts: 135
    edited June 2021
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    mamacure, I've had to get two blood transfusions, one in April and the other yesterday. I was really scared about it, but I feel so much better, I had absolutely no energy. My hemoglobin was down to 6.3, I felt like I was going to pass out and no brain power. I hope I don't need another one and I can get my values up.

  • mamacure
    mamacure Member Posts: 256
    edited June 2021
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    Thanks NatureYogi, glad to hear that you felt better after the transfusions. Hope you are doing well. My last hemoglobin before the last infusion was 8.4, RBC 2.75, WBC 4.2. I check again tomorrow.

    I was supposed to meet with my surgeon this Friday, but she wants to see the MRI first so rescheduled for end of this month. Anxious for that meeting.

    Also, my Onc thought that Keytruda was attacking my RBC, but bloodwork said it was not, so that is a little bit of a good news this week.

  • lw422
    lw422 Member Posts: 1,403
    edited January 2022
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    EBBA--if you're out there, please check in. I don't know why I haven't responded to this thread in so long; I guess I got caught up with surgery, radiation, and all the fun cancer things. I hope you are doing well these days. If you see this, please check in and update.