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How long have you been Stage IV?

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  • dancemom
    dancemom Member Posts: 404
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    15 months. 15 long months of treatment after treatment. I guess longer is better then shorter. But I hope for some balance at some point.

  • seeq
    seeq Member Posts: 1,112
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    Today is my cancerversary - 2 years de novo Stage IV with liver mets

  • lulubee
    lulubee Member Posts: 903
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    Twelve years at Stage IV, fifteen since initial diagnosis. Mets were originally found in 2010 throughout my skeleton and (by pathology following complete hysterectomy) on an ovary. In 2013 MBC infiltrated my common bile duct. In 2016, a massive malignant pericardial effusion almost took me out. At the beginning of 2022, it showed up throughout my liver. It's a long game of whack-a-mole.

    After 12 years of Her2-, the buggers mutated to Her2 Low when they invaded my liver. Go figure?

    I've taken Femara, Afinitor + Aromasin, Faslodex, Xeloda, Taxol, Halaven, Verzenio, Piqray & Faslodex, Carboplatin, Gemzar, Herceptin & Perjeta, and now on Enhertu.

    I'll put up with a lot just to be with my husband, children and grandchildren a while longer. Life is precious. I'm thankful to still be here.

    ~Lulubee

  • mamadetres
    mamadetres Member Posts: 15
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    Went in for a PET scan on June 2, 2022. Received results on June 6th. Lesions found on my ribs, vertebrae, enlarged node (will be biopsied). It was also discovered that I had a pleural effusion(I thought the cough was long term COVID and shortness of breath due to weight gain/being out of shape). Testing from thoracentesis showed it to be MPE on June 10th. Getting a head CT on June 16th. I was originally diagnosed stage 2, two weeks after my 38th birthday. Now age 45 and stage 4.

    The posts on this site have been so incredibly encouraging. I can learn to LIVE with MBC!! <3

  • elderberry
    elderberry Member Posts: 1,065
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    mamadetres: I am sorry you find yourself here, but welcome!! Let us know about your CT

  • divinemrsm
    divinemrsm Member Posts: 6,154
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    mamadetres, sorry to hear of your diagnosis. It’s unfair for young women like you to have to deal with stage iv bc. I hope that you get the support you need from this forum in the same way that it’s been a lifeline to me. Best wishes as you start this new chapter.


  • mamadetres
    mamadetres Member Posts: 15
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    Thank you Divinemrsm!

    This site has been a lifeline! <3

  • mamadetres
    mamadetres Member Posts: 15
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    Head CT came back clear!! Yay! Meds were approved today. I should start Kisquali/Letrozole on Monday. Waiting to hear back from infusion center on when to start Zoladex/Exgeva.

  • elderberry
    elderberry Member Posts: 1,065
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    mamadetres: Hurray for the clear CT!! I hope things go well on your treatment line.

  • mjmoose
    mjmoose Member Posts: 1
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    Just joining this fine MBC group (wish I could say with pleasure) certainly with some anxiety and much reluctance. This spring, I just thought it was "sciatica". June 15,2022 PET-CT confirmed bone lesions on spine, ribs, right hip and tailbone, etc. Onco Dr. meeting is next Tuesday the 21st, so with a long weekend ahead I'm trying to get all my questions together for her. Does anyone have suggestions so I don't miss anything? I'm sure there will be a biopsy of some sort scheduled soon to see if the cancer is the same as the original ( hr+pr-) from 2011. Can I start any meds before the biopsy? Thank heavens for Xanax and all of you. MJ

  • sunshine99
    sunshine99 Member Posts: 2,644
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    mj, I'm so sorryl

    I have just two pieces of advice: Don't start the meds before your doc tells you to do so. Mine was very clear about that. Second: If you end up getting radiation and they use the word "palliative" DON"T FREAK OUT! "Palliative" and "hospice" are not the same thing. Palliative means a way to help with your symptoms (pain) and DOESN'T mean that you are dying next week. I wish they had told me what that word meant, and I was too freaked out to ask.

    Oh, and one more thing. Do NOT add Dr. Google to your medical team. He will have you putting a rush order on your coffin! He's a quack (most of the time.) He did help me with the "palliative" thing, but most of the time, he's just an alarmist.

    (((hugs)))

    Carol

  • elderberry
    elderberry Member Posts: 1,065
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    mjmoose: Welcome to the club to which no one wants to be a member. Ditto on what Sunshine says (but I still go to Dr Google and freak out anyway then confess to my MO) Have someone with you when you see your MO so that person can take notes. If you can't go in person, go on speaker phone. My first meeting all I heard was "MBC blah blah blah" "Prognosis blah blah blah.." "Treatment blah blah blah..." I was grateful to my friend and her notes.

    Easy to say but try not to freak out. If you need to take an anti-anxiety med, do so. And come here and to all the other threads. You will find much support and cyber love.

  • sunshine99
    sunshine99 Member Posts: 2,644
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    elderberry, I got a laugh out of your post - a laugh of, "Oh yeah, been there, done that." A few visits ago, my MO was telling me to schedule this appointment and that appointment, and to see her in X weeks... I must have looked at her with a blank look, because she asked, "Do you want me to write this down?" "Um, yes, please!"

  • MicheTheVanquisher
    MicheTheVanquisher Member Posts: 62
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    8.5 years. I did Herceptin and Perjeta for about 5 years then Herceptin hylecta. Sadly my tumor markers have been creeping up this year. PET scan and MRI show nothing. I’m mentally buckling down for more tests, new drugs, possibility of a new site. Ugh

  • margaritams
    margaritams Member Posts: 183
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    michethevanquisher, I’m in a similar situation. I’m 7 years out from diagnosis. I’ve had several different treatments and progressions but immunotherapy got me to NED almost three years ago and I was on it for 2.5 years. Now I’m only on Hylecta. My recent PET and MRI were clear but my tumor markers have gone up a very little bit every time they are checked. Historically, they have been very accurate in trending up when I’ve had progression so I feel like I’m just waiting for the other shoe to drop. Ugh is right!

  • carmstr835
    carmstr835 Member Posts: 147
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    I was diagnosed March 7 this year with stage 4 metastasized to my lungs. Pet scans were negative. All 5 lesions all under 1 cm, both lobes. They did surgery to remove all known lesions and several lymph nodes with good margins for all tumors. All were breast cancer cells. They were not all the same, however. Some were HER2+2 and some were HER2+0. All HR+ PR low and KI67 was high. 2 weeks after the final surgery I started navelbine April 7; day 1 and day 8 every 3 weeks, and 5-6 weeks later my cancer marker CA15-3 increased for the first time to 42. They check it regularly now and it goes up or down a couple points. 42, 36, 37, 34, 35. But rather stable. I had a CT scan end of May that was clear, they want to continue to watch but they believe most of what they see in my lungs is surgery related. I will have another scan in a couple more weeks. I have few issues with navelbine except ANC. I wanted my team to give me Nuelesta at my last chemo. They declined and stated they will just watch it. I do not want to miss my chemo. I don’t understand their reluctance to make a plan. My ANC is consistently dropping and by next week it will be below 1 and too low for chemo. If I just do as they tell me. I will miss my next chemo. I have a script to get a blood test post day 10, Nadir for Navelbine. If it is below 1 I believe they will put in an order for neupogen injection, I hope. I need that 72 hours prior to my chemo. But why do I have to request this plan and really push for it? Why don’t they look at the trend and see that my ANC will be too low? This does cost me, traveling 4 days early for my 7 hour, one way trip to my cancer center and pay for several days of a hotel when all they had to do was give me the Nuelesta when I was there fro my last chemo.

    I am thinking of going to a new cancer center for a 2nd opinion, anyone know much about the Cleveland Clinic? I called them and filled out their registration paperwork and was told to call them before 5pm the next day, I did, but no one called me back, I left a message on voice mail. That was 3 days ago.

    I just want treatment I don’t have to fight for and I don’t want to miss my chemo if it is not necessary. Any suggestions? Sometimes now that I am stage 4 it seems nobody really seems to care much about my treatment. I had to really fight for pulmonary rehab, stage 4 cancer doesn’t generally get to have pulmonary rehab, I was told Medicare will deny it, but my pulmonologist took care of it. I got my rehab, but getting a different level of care bothers me a lot. My lung issues had nothing to do with cancer it was the fact I had 2 lung surgeries in 4 weeks and my lung didn’t seal like it should have because of the wedge surgery, not because it was cancer. I just feel like the treatment is much more lax than it was first time around.

    I have no intention of letting this cancer win this fight. I am healthy. I graduated from pulmonary rehab in just 3 weeks. I walk a 20 minute mile and ride my bike for 3-4 miles 3 times a week and well I want my best chance, and for that I need my team to believe in me.

  • divinemrsm
    divinemrsm Member Posts: 6,154
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    carmstr835, sorry that you had to join this club, but it sounds like you are a good advocate for yourself. I do think there are plenty of medical professionals who treat mbc patients well and not like a lost cause, so if you are unhappy with your current team, it's a good idea to get a second opinion. I get treatment in Pittsburgh, PA but live two hours from Cleveland Clinic and many people where I live travel there for different medical reasons. I can truly say I've never heard bad things about them. Generally, it seems worth it to people to travel there for good medical care. Since you have not heard from them in a few days, call back. I find it helps to get a real person on the phone, not a recording. Don't be afraid to be persistent. Call every day until you get what you need, I find oftentimes that's what it takes. We really are our best advocate. I've learned that even medical professionals don't truly grasp we are fighting for our lives. I am polite but firm when I talk to them because I know what I'm dealing with even more than they do.

    I'd definitely inform your current team about the cost you incur, the distance you must travel and hotel room you pay for in order to get the shot in time before chemo. There are many times when I am scheduling scans or treatment that I say I'd like them coordinated together because I drive an hour to get there and don't want to make numerous trips for things that can be grouped together. I find hospital staff is understanding of that and do their best to work with me. Best wishes to you.


  • ericalynn
    ericalynn Member Posts: 21
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    just checking in with you Jacque! How has Enhertu been

  • goldie0827
    goldie0827 Member Posts: 6,835
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    Ericalynn, in regards to your post, I don't know if you are stage IV or not, as it doesn't state that in your bio. I see that you are new to BCO, but this page is just for stage IV gals and it's not a page to ask someone how they are doing, it's "How long have you LIVED with stage IV". Please PM Jacque or post on another thread that she is in. I'm not trying to be mean, just want you aware. Thanks!

  • sorella
    sorella Member Posts: 54
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    mjmoose and other fine people here. I am sorry to hear about your diagnosis. Like you mjmoose, I thought mine was sciatica, really, really, really painful sciatica. I was diagnosed in Dec of 2020 so I am not the newest but new. I am heartened to see so many of us living on with this disease. I had BC in 2016 and once "recovered", I had three years of clean mammograms. But here I am. In the beginning I took a lot of anti anxiety meds and boy did that help. I would say don't let anyone try to guilt you about that. My palliative doc is great and I depend on her emotionally as well. I was on dexamethazone so in the beginning the anxiety meds never made me tired. Now that I am doing a lot better, I only take them occasionally because of how they tire me (but not allowing me to nap). I take long released narcotics for pain and I am on a low dose of zoloft and I use sleep meds in addition to cancer meds ibrance, falsodex and so on. I try to do yoga everyday. I am trying to live my life fully and as long as possible. Lately I am able to do so without the deep depression I experienced in the beginning when I was very sick needing neck surgery and having to stay off my left foot for weeks because of impending fractures. I spent my 65th birthday in rehab. Family can be a great comfort but also difficult at times as each has their own life and troubles. My husband is devastated but cares for me with every fiber of his being. Unfortunately he has always suffered from extreme health anxiety so you can imagine how this might exacerbate that. My grown son and daughter are wonderful supports but like I said have their own needs. My daughter is in the midst of possible divorce with a 2 year old daughter of her own. My granddaughter is the joy of my life. But with covid and other worries because of my immune system, sometimes I can't see her which just rubs in the pain of all of this. Wish none of us were in this club but since we are, I am grateful for this shared support. Be well!

  • basquemomma
    basquemomma Member Posts: 7
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    I was diagnosed with Stage 3A BC at 39yrs old in 2004. Surgery, chemo, radiation, and Tamoxifen were my treatments. Completed them without any complications.

    Fast forward 15 years later, I was having difficulty breathing, but I was also a caregiver to my mother who had had BC when she was 52yrs old (she was 79 in 2018) and now fighting Stage 4 colon cancer, was legally blind due to macular degeneration, and was having bleeding in her remaining breast so I was too busy handling her medical issues to pay attention to my own. She stopped her treatment for the colon cancer, had a mastectomy, recovered from surgery, and resumed her treatment for the colon cancer. I finally had a moment to deal with my breathing issues.

    Went to the doctor figuring I either had pneumonia or had suddenly developed asthma (never having either conditions). The urgent care clinic did not have a chest xray machine so she prescribed me some meds and said if I didn't improve in a week, she wanted me to go to the ER or PCP so I could get a chest xray. Well, I didn't improve. Went back in and had a chest xray. Right lung was completely collapsed with fluid filled up under it in the pleural cavity, and the left lung partially collapsed with fluid under it as well. There was fluid around my heart too. Had the fluid drained and sent out for cytology. Had the fluid drained two more times (ouch) when cytology came back that fluid had cancer cells in it. Saw my original oncologist and he said to stop the drainings as it would not stop filling up until the cancer was managed (I confess I wasn't sad about stopping the drainings). Started Verzenio and Anastrozole in May 2019 and I have been doing well since. My last visit (09/2023) was the first time I heard I was in remission from a medical professional, although I had suspected it for some time because my scans didn't show any changes after my condition improved. :)

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
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    basquemomma,

    Sorry that you find yourself here but welcome. This thread has been inactive for a while but perhaps your post will revive it! Take care

  • margarita12
    margarita12 Member Posts: 15
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    basquemomma,

    Almost 5 years since your stage 4 diagnosis is a pretty good period and I wish you even more years. My mother has the same diagnosis since July 2022 and has been doing well on verzenio. I was wondering if you have switched medication since 2019 or if you were only on verzenio and arimidex since then. Thanks for your note . Really encouraging!

  • seeq
    seeq Member Posts: 1,112
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    I posted here a couple years ago, but I'll update. Diagnosed de novo Stage IV with liver mets in June 2020. Reached NED in April 2021 on Verzenio and anastrozole and I'm still there. 3 yrs, 8 mos on my first line of treatment.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
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    I guess I should update as well. I passed the 12 year mark in November 2023.

  • chicagoan
    chicagoan Member Posts: 992
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    I'm at 7 1/2 years now. So far, still have a great quality of life. Thankful for every day.

  • harrow
    harrow Member Posts: 77
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    I’m still relatively early in this ridiculousness and seeing how long people can live is very inspiring and provides me with some hope. So thank you for reviving this thread!

  • threetree
    threetree Member Posts: 1,427
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    About 1.3 years.

  • AJ
    AJ Member Posts: 219
    edited April 19
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    I’ve been stage 4 for 16 months. Mets to lungs, liver, and brain. And now to L4. Flunked Verzenio and Letrazole. Now on Xeloda, Faslodex, and Zometa. Originally diagnosed Stage 2 in 2013

  • beckymd
    beckymd Member Posts: 26
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    7 1/2 years stage 4.