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Swollen armpit, collarbone lymph node & neck lymph node

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  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Hi Cowgal, thanks so much for checking in with me. I still do not have my bone scan results.... Hoping to hear something today.

    Otherwise I am doing ok, really uncomfortable with this whole swallowing issue. From my neck to my arm, just continuously aches but it's bearable and I am still working full time.

    Hope all is good with you Cowgal

  • laughinggull
    laughinggull Member Posts: 511
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    And just one more week to see the oncologist. Crossing fingers for good bone scan results. We are on your side

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Thank you LaughingGul

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    My bone scan came back clear!!!

    NO EVIDENCE FOR SKELETAL METASTASES


  • cowgal
    cowgal Member Posts: 625
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    Great news! Hopefully, the PET will show that your only areas of involvement are the ones you already know about.

  • minustwo
    minustwo Member Posts: 13,080
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    WOO HOO!!! Good news Jo-Jo.

  • 2019whatayear
    2019whatayear Member Posts: 464
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    good news

  • laughinggull
    laughinggull Member Posts: 511
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    Fantastic news Jo-Jo! So happy for you

  • armom4
    armom4 Member Posts: 82
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    Yay! 💓

  • 7of9
    7of9 Member Posts: 474
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    Jo Jo - I am six years out from recurrence in 10/14 nodes in axillary. Got the uterus and ovaries out same time. How fast can they shut down or take your ovaries out to quit feeding it? It hasn't been a smooth 6 years...but DAMN good times - boating, vacations, lots of school activities with our son...go for it! Be aggressive and let the radiation mop this bitch up whatever chemo doesn't kill. Definitely get the ER our of your system and push hard for that. I feel it made a huge difference. The aches and pains, hot flashes come and go but the more you exercise, meditate, soak in hot tubs...it is doable!

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Hi 7of9,

    I am definitely going to speak to my oncologist about what you mentioned - thank you! Very happy to hear you are 6 years out an doing great, that is awesome!

    Thank you ladies for all your support and good wishes, hoping to start treatment asap!

  • mellie361
    mellie361 Member Posts: 2
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    Dear Jo-Jo,

    I haven't been on here in a long time but popped on because my gyne found a swollen lymph node in my armpit on my mastectomy side and I found this thread.

    I've just read through this thread - so sorry that you have to deal with this...but relieved that there was no evidence of skeletal mets! Sounds like you have a good team around you and a solid treatment plan.

    My bc was quite similar to yours. I have my annual mammo/ultrasound on 25/3 so my gyne told me to not to be worried and wait until then.. I have the impression that I have some swelling on the mastectomy side and the node in my armpit is very stingy/sore to touch. Have to wait a month now for the mammo...

    When will we ever get off this roller-coaster... :-(

    Sending you big hugs,

    xxxxxxxxxxx

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Hi Mellie

    Oh man, I wish we could just stop the roller coaster and get off... permanently!

    If your gyne is not concerned I'd take that as a big positive, pity you can't get an earlier appointment just to ease your mind though, waiting is never fun. That node is probably just doing it's job and a little swollen from fighting off an infection.

    Please pop in after your mammo & ultrasound and let me know how it went.

    Thanks for the message and the hug, sending a big hug right back!

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    So I saw my MO today, the cancer is in my axillary, cervical, supraclavicular and mediastinal nodes. There is also a new lump in my "good" (not so good) boob and 4 lumps along my mastectomy scar now too. I have started taking Kisqali, Letrozole and Zoladex. Meeting with a radiologist tomorrow to get started on radiation.

    October I had a mammo and US with no findings. This is an aggressive bugger, appeared out of nowhere and spreading like wildfire.

  • cowgal
    cowgal Member Posts: 625
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    Jo-jo, I am glad they have started treatment for you and between the drugs and radiation they conquer and kill all of your cancer. Do you know what type of radiation they will be giving you? Did you receive any radiation for your first breast cancer? On my first breast cancer at stage 2B, they did a chest wall radiation. I didn't know if you had that as well. Hopefully, the PET scan on the 9th won't show anything else. So sorry that you are having to deal with this.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Hey cowgal,

    I never received any radiation with my first diagnosis. When I went to see the radiologist on Thursday he said they are doing my neck, axillary and chest wall. He could not stop staring at my neck node, I dont think he once made eye contact. It really is disgusting to look at, like an alien. Thank goodness I can hide it with my hair while out in public! The PET scan was actually the bone scan which I managed to get in earlierba couple weeks ago (my brain has been all over the place lately)

    My MO is a pompous a/hole, every question I asked he brushed me off like I was an idiot. But he does seem to know what he is doing and gets things done quickly.

    I'm still battling to get my head around being stage IV 🥺

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Hey cowgal,

    I never received any radiation with my first diagnosis. When I went to see the radiologist on Thursday he said they are doing my neck, axillary and chest wall. He could not stop staring at my neck node, I dont think he once made eye contact. It really is disgusting to look at, like an alien. Thank goodness I can hide it with my hair while out in public! The PET scan was actually the bone scan which I managed to get in earlier a couple weeks ago (my brain has been all over the place lately)

    My MO is a pompous a/hole, every question I asked he brushed me off like I was an idiot. But he does seem to know what he is doing and gets things done quickly.

    I'm still battling to get my head around being stage IV 🥺

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    Jo-jo, any chance you can get a new MO?! I can't imagine doing all this with someone who acted like that. It's good he's getting things done fast but....most oncologists can move quickly and be a decent person at the same time.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Parakeetsrule this was my MO for my first diagnosis, I had my 1st consultation with him and never saw him again. I saw a RN who was absolutely amazing, sure hope it will be the same this time. If not I will find out how to change MO's

  • cowgal
    cowgal Member Posts: 625
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    Jo-jo - are you sure you are stage 4? I didn't know if your areas would still have you maybe as stage 3 but not sure. If you are stage 4, I would encourage you to come join us in the stage 4 forum. I think you will find a lot of help and support. I am on Ibrance, XGEVA and Faslodex but you will find others that are on your medications in the group. There are some very knowledgeable people in our stage 4 group.

  • aprilgirl1
    aprilgirl1 Member Posts: 757
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    Hi Jo-Jo, I am sorry you are here but it's good that you have a plan and have started treatment. In 2019 I had a cancer recurrence in distant nodes. In my case the nodes involved were cervical, superclavical, mediastinal,hilar and precarinal so more extensive spread. My oncologist said I am stage IV due to the distant nodes, so I imagine the mediastinal node in your case it what puts you to that stage.

    I have done well on Ibrance and fulvestrant (2 years and 3 months but who's counting, haha) and have had no evidence of active disease within 6 months of starting these drugs. I have a meeting tomorrow with my onc to review my petscan from last week and hoping it's still NEAD. I have heard great info on Kisquali which is similar to Ibrance but the studies published on Kisquali have a longer progression free survival stats.

    Like Cowgal mentioned, there is a Stave 4 forum and there is a thread for people on Kisquali. I have found great support from others on my meds, especially when I was first starting (and terrified).

    editing to add that this accidentally posted twice so I deleted the 2nd post!

  • aprilgirl1
    aprilgirl1 Member Posts: 757
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    Hi Jo-Jo, I am sorry you are here but it's good that you have a plan and have started treatment. In 2019 I had a cancer recurrence in distant nodes. In my case the nodes involved were cervical, superclavical, mediastinal,hilar and precarinal so more extensive spread. My oncologist said I am stage IV due to the distant nodes, so I imagine the mediastinal node in your case it what puts you to that stage.

    I have done well on Ibrance and fulvestrant (2 years and 3 months but who's counting, haha) and have had no evidence of active disease within 6 months of starting these drugs. I have a meeting tomorrow with my onc to review my petscan from last week and hoping it's still NEAD. I have heard great info on Kisquali which is similar to Ibrance but the studies published on Kisquali have a longer progression free survival stats.

    Like Cowgal mentioned, there is a Stave 4 forum and there is a thread for people on Kisquali. I have found great support from others on my meds, especially when I was first starting (and terrified).


  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Thanks ladies, I will be popping over to the stage IV forum. I have heard good things about Kisquali/letrozole combination, first couple of days were rough but every day seems to be a little more tolerable. I was told stage IV due to it being in cervical, superclavical, mediastinal & axillary nodes and each of these nodes are capsulated with cancer with 3 masses intertwined with jugular vein.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Saw my MO yesterday, treatment has not worked at all and the cancer has grown and is now also in the skin. The 1 lump grew 6cm in 3 weeks while taking the Kisqali, Femara & Zoladex

    I have stopped the previous treatment plan and tomorrow I start ACT for 8 sessions. I am absolutely petrified

  • moth
    moth Member Posts: 3,293
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    jojo, sorry to hear that.

    It's always frustrating & scary when a treatment doesn't work but you have tons of treatment options ahead & only one of them needs to work. AC+T is totally doable - exhausting but doable. Is radiation an option for any of your nodes?

    hang in there

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    Oh no! That must have been so scary to hear. Like Moth said, that's just one treatment and there are lots more out there, and ACT is doable. Make sure you let your doctors know about any side effects you experience (especially nausea) because most of them are manageable, and once you get them under control the main thing to do is just rest and sleep until you perk back up.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    FAC stupid phone! Not ACT

    Fluorouracil, Adriamycin & Cyroxan


  • runnergirl26
    runnergirl26 Member Posts: 66
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    Sorry JoJo to hear that you are going through this again. Did you have chemo the first time or just radiation? Be kind to yourself!

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    runnergirl, I did have chemo the first time. I had 4 cycles of TC

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Back again....

    Just completed 7/8 FAC chemo and it's not doing anything for me. I have more tumors in my neck emerging and old tumors growing despite radiation & chemo.

    In 2 weeks I will be starting Vinorelbine chemo for the rest of my life if it works. Anyone have any experience with this drug?