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Swollen armpit, collarbone lymph node & neck lymph node

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  • aprilgirl1
    aprilgirl1 Member Posts: 757
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    Jo-jo2018, you have been on my mind this week. I am sorry that FAC didn't work. I haven't had Vinorelbine but it's also known as Navelbine and I believe there is a thread on that chemo in stage IV threads. Sending you good energy, love and prayers that this chemo kicks the cancer to the curb.


  • aprilgirl1
    aprilgirl1 Member Posts: 757
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    Jo-Jo2018, has your MO taken a new biopsy, especially of any of the new tumors to see if the er/pr/her2 status has changed? I am hoping so and that is why you are starting the new treatment in 2 weeks. If you haven't had a recent biopsy I would request one. I would also see if they can send the biopsy for evaluation for any mutations - even if you had that early on I have read that cancer can acquire new mutations to work around the chemotherapy and render it useless. I am not an oncologist but it seems like your cancer or some of your cancer is not responding to ER+ treatment. I have read that some people have a mix of tumor types: some that are ER+ others that along with others that are triple negative.

    Has your oncologist discussed Keytruda? I have read about Keytruda for triple negative breast cancer and is immunotherapy.

    Sending you strength and love. Let's find something that gets rid of your tumors.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Aprilgirl1 thank you! I will head over to the thread you mentioned.

    I have not had any new biopsies. All I know is my initial status in 2018 was ER+PR+ and in January it was ER+PR-

    This cancer is definitely mutating as all my MO has thrown at it does stop its growth. Triple neg scares me..... I will speak to him about this at my next appointment- Thank you for taking time to reply and all the information ❤

  • aprilgirl1
    aprilgirl1 Member Posts: 757
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    Hi Jo-jo2018, not to be a pest but please send your oncologist or their team a message,don't wait for the next appt unless it was yesterday;) I don't know when your next appt is but if they will take a biopsy that will take time to schedule and come back. The time while we wait for answers is so exhausting and terrifying. Let us know how you are doing, ok?

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Hey ladies!

    Wow, this forum is slow since I last logged in. I had to take a break after Moth's passing, that hit me hard.

    Saw my MO today, Vinorelbine is no longer working for me. I did get almost 6 months from it. I start Halaven (erubulin) on Saturday. I fucking hate cancer. Im sick and tired of the gong show

    Hope you lovely ladies are all doing well, I sure missed this forum

  • cowgal
    cowgal Member Posts: 625
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    Jo-jo2018 - I had been wondering how you were doing. I am sorry to hear that you are going to have to change treatments. I hope the Halaven works for you for a long long long time and with manageable side effects. Moth's passing and the passing of some others does hit hard. I do think that sometimes we need to take a break from here periodically. In our stage 4 world it is also normal to worry about someone in the group when they haven't posted in a while because we automatically think that they may be struggling or even worse.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Thank you cowgal for popping into this thread and for your encouragement. Sorry I had you worrying.

    Hope you are keeping well x

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    And Havalen failed me after only 3 months. I had substantial progression

    Onto the next which will be Xeloda 🙄

  • lw422
    lw422 Member Posts: 1,399
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    Hey Jojo. Sorry to hear of the progression; one more bite of the shit sandwich. 😕 Here's hoping the X will work well for you; we are all in your corner. Hang in there, girl.

  • aprilgirl1
    aprilgirl1 Member Posts: 757
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    Jo-Jo18, I am so sorry to hear you had progression on Havalen. I have seen Xeloda work wonders on a lot of people on these boards. Have you had a recent biopsy on any of the newer mets? I have also read about a test called Travera which tests tumor tissues against specific drugs. Travera might be pricey but you can call the company directly and see what the process is (I have read you need a fairly large tumor sample).

    Hang in there, we are in your corner as lw22 said.

  • moderators
    moderators Posts: 7,918
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    Oh, we're so sorry to hear this, jo-jo2018. We hope Xeloda turns out to be the one. Thinking of you!

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Hello beautiful !

    I am in palliative care for pain control. Xeloda did nothing for me and the progression while on it was ridiculous. I have decided to stop all treatment & my doctors agree

    I'm hoping to be able to go home with no pain or at the very least bearable pain to spend some quality time with my boys before my time comes.

    Keep fighting beautiful people ❤️

  • moderators
    moderators Posts: 7,918
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    @jo-jo2018 We're so very sorry to hear of this turn. We're sending love your way and hopes for a painless, peaceful and meaningful time spent with your family.

    Gentle hugs to you,

    —The Mods

  • lillyishere
    lillyishere Member Posts: 770
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    Enjoy your time with your boys jo-jo2018. You will always be part of their life. Sending you hugs.

  • aprilgirl1
    aprilgirl1 Member Posts: 757
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    Jo-Jo, we understand and wish you peace and pain free days while you spend time with your boys . Damn this disease . You are loved and your boys will always have you with them . Thanks for letting us know. Sending you love and hugs .

  • mavericksmom
    mavericksmom Member Posts: 1,129
    edited July 2023
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    Jo-Jo, I have been following this thread since you posted in March of this year, but I never commented because I didn't know what to say. I went back to page one, and wow, what an example you have set for so many! Your positive attitude, your determination, your courage, astounds me. I want you to know not a day goes by that I don't think of you. I hope you have much quality time with your sons! I wish my sister had made the final choice you made, but sadly she did not. I hope if I face a similar situation as you are currently in, that I take the same path you chose.

    Your story reminded me of my first day of chemo in 2003. I was nervous and scared as they hooked me up to that dreadful "Hawiian Punch" red IV. My sister came to sit with me. I noticed the most beautiful, dignified woman at the desk. She had short white hair, slender build, so attractive, and she was smiling, thanking and hugging the nurses for all their help. She brought the staff some baked goods.

    I sat there thinking "how wonderful, I am sitting here at the beginning of my chemo watching someone who has finished hers!" Then my nurse came in to check on me and she was crying! She apologized for her tears, and said that woman who everyone came to know and love, had come in to say good-bye. She said there was nothing more that could be done for her.

    That is the day I truly hated this beast we fight! I will never forget that woman, never!!!! Thank you lovely Jo-Jo, for showing us all, a great and powerful example of how to live and how to let go.