Life does not end with a stage IV diagnosis (really!)

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  • OncoWarrior
    OncoWarrior Member Posts: 5,234
    edited May 2019

    Good to read all your comments. I am in a bit of a "monsoon season" just now - - crying some every day. And kind of lost, as we are not settled in on things. All I know for sure is that there is an infusion on Monday. Been playing phone tag with doc since Friday. Still no info on the PET scan. Did I light up their Christmas tree??

    Karenfizedbo15, where in Scotland, lassie?

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  • OncoWarrior
    OncoWarrior Member Posts: 5,234
    edited May 2019

    Onco-doc called today. She has conferred with pancreatic and GI docs and their main concern is the tumor more than the bones just now. They want to use chemo to shrink the tumor and so there will be my port installed on Friday. Monday we meet to discuss chemo options, also to make appointment with GI doc put in a duodenal stent, and get a palliative care referral, and have first zometa infusion.

    It's gonna be a helluva summer, my friends!

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  • OncoWarrior
    OncoWarrior Member Posts: 5,234
    edited May 2019

    I like this.

    image

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited May 2019

    Oncowarrior... great name by the way... monsoon is a good way of describing this - you clearly are in a very high intensity and scary phase of this diagnosis. Many of us will empathise, by the way. BUT important to factor in this is actually a long game... the longer the better -By the way....

    I’m in the Glasgow area and ‘ by the way’ is how we ‘fill’ moments where we think we are right or where we really don’t know what to say in reality! None of that probably makes sense to any one who is not a Scot but hey!

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited May 2019

    We liked Edinburgh more than London when we did a UK tour a few years ago. Went to St Andrews even though we don’t golf. My husband’s family, all derived from ethnic German stock (quite common here in Wisconsin!) seemed to enjoy giving their male offspring Scottish names: Wallace, Donald, Bruce, etc.

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited May 2019

    vlnprph we aim to please!

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  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2019

    Good luck Oncowarrior...xxxx

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2019

    HAPPY MOTHER’S DAY!!

    I hope you’ve all had an excellent Mother’s Day. We opted for something different this year and had a picnic brunch at a local park. The weather was lovely as was the food and drinks (Yum, mimosas!). Since my two youngest grandchildren are 3 and 1, a park was a great setting.My oldest grandchild, 7, enjoyed shepherding her cousins around the playground. Afterwards, older dd 7 year old and I went out for pedicures .

    I hope you’ve all had a relaxing day 😊.

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  • Elderberry
    Elderberry Member Posts: 993
    edited May 2019

    Karen: I love Glascow --- better than Edinburgh. I say "by the way" a lot as well. It must the be the Scottish (father) side of me.

    Newly diagnosed -- so - yeah -- always on the edge....................


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  • Elderberry
    Elderberry Member Posts: 993
    edited May 2019

    Steph: I wondered the same things. Did I miss something I should have found sooner? All sorts of thoughts. IT IS NOT YOUR FAULT. I was only diagnosed back in March so I am still struggling with it all. I find the posts here to be encouraging. Read what these wise and wonderful women have to say. They will be your beacon of light when you are in a dark place.

    Blessings

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited May 2019

    Breathe lots and deeply Ladies....exbrnxgrl is a great example. I am only a year in and still very anxious .... scan next week. BUT trying to balance out the scanxiety with little bits of JOY however hard they are to find. ( Findingour avatars hard to spell though .... it's the drugs!)

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2019

    Thanks, Karen (I am C-A-R-Y-N). I have virtually no anxiety before scans but I go crazy waiting for results! I am not always successful, and it’s getting more difficult, but I really do aim for one day at a time. Take care, all

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  • OncoWarrior
    OncoWarrior Member Posts: 5,234
    edited May 2019

    OncoWarrior Update:

    We have extensive bone mets and will do chemo. Today: conference with onco-doc and first zometa infusion. Thursday: duodenal stent placement. Next: followup with other docs to determine if bone cement or radiation is best for vertebrae.

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  • OncoWarrior
    OncoWarrior Member Posts: 5,234
    edited May 2019

    Verzenio (abemaciclib) and Faslodex (fulvestrant) starting soon. I see that diarrhea and nausea are side effects. Doc recommended immodium and ordered an anti-nausea prescription. Any helpful comments from you? Does the diarrhea subside after a while? Should I buy immodium by the case? Maybe get some Depends? Dietary recommendations?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2019

    OncoWarrior,

    I’m sorry you find yourself joining us. Have you checked out the Verzenio thread? You might find more responses to your tx questions/experience on that thread rather than this one which is focused on “normal” aspects of life despite being stage IV.

    https://community.breastcancer.org/forum/8/topics/861227?page=35#post_5399819

    Take good care of yourself

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  • OncoWarrior
    OncoWarrior Member Posts: 5,234
    edited May 2019

    xbrnxgirl. Thank you. I signed up there, too. Looking in different places for all the help I can get.

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  • ts542001
    ts542001 Member Posts: 56
    edited May 2019

    i'm sorry to be joining this thread. just found out this morning that i have bone mets. (well at least maybe some RT will help with the bone pain). needless to say, i am a mess. i know that bone mets are not a death sentence. my mother lived for 10+ years with bone mets and she died in 1986, way before any of the new treatments that are now available. i just need to get by the next few days, waiting for tests to be scheduled and waiting for results to come back and hopefully getting scheduled for RT. i think my priority right now is to deal with the bone pain. i'll deal the rest of being stage IV and it's implications once i get the pain under control. was diagnosed with idc right breast and dcis left breast 15 years ago. this past march i was diagnosed with new idc left breast (er/pr + her2 -). all this happened so quickly, from diagnosis, to pathology of micro met to sentinal node and multiple foci of LVI. still even though i had back pain didnt think it was bone mets. i've had arthritis and spinal stenosis for several years. but recently the pain has become unbearable. and still i didnt think it was bone mets. still digesting what it means. still not sure what homrone therapy i will be getting.


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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited May 2019

    TS542 so sorry you are joining us :( the good news is that we are a very supportive and loving group with probably more info than any one oncology team can offer. Please know you can cry vent ask questions over and over again to us. So many of us want to help one another get through the ups and downs. I would be lost without this crew, truly!

    Sounds like you’re in the info gathering time. Let us know what info you discover and what your plans are. There is a deep grieving that comes with MBC, even for those who’ve managed through BC diagnoses in the past, like yourself. It feels so much more morbid, but as you wrote from your experience with your mother, nothing immediate is going to happen. You have a lot more time here’s on earth, so strap on your reigns and get ready for this new ride. Sometimes a bit bumpy but also full of joy and love.

    Big hugs to you,

    Philly

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2019

    Hi ts,

    So sorry to hear about your mets. Have you checked out the bone mets thread? That is a good place to ask questions, commiserate etc.

    This thread is a great place to come for hope and inspiration and leave the medical drudgery behind for a few minutes. You can read about how some of us are living with mets and trying to live well. I myself am coming up on eight years with bone mets and have been surprised by the relative normalcy of my life.

    Wishing you the best

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited May 2019

    I have been pretending to be normal and doing fun things recently. My DH and I went to opening night of Avengers, Endgame. We then went the next week and took our grandson.

    Now we are planning a camping trip, actually several.

    So, my point is, my life and the life I want to have is not ending. Not yet. I plan something special every week. And yes, I am tired and rest when I need to. But if I can get out of bed and get dressed, then I am doing something..gardening, walking, concerts, manicures, preK graduation, mowing grass, field trips with gkids, cooking class, book club, cards,.

    Next week I am taking a ferry ride to our favourite Thai restaurant.

    So..what is everyone else doing that is fun?

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited May 2019

    Sandi, Like you, I am living my life and doing things I enjoy. My dh and I have planned a trip to the Grand Canyon for September. We have always wanted to go, and I can’t wait. We are going to spend some time on Martha’s Vineyard this summer. Two of my sons are going there with their families, and they invited us to join them.

    During the past year we took trips to Hawaii and Florida. I love the beach, especially in places with warm water. We spend a lot of time going to our grandchildren’s activities, so we have seen lots of baseball, lacrosse, basketball, and soccer games as well as track meets, school plays, concerts, and robotics competitions. I laugh at the fact that we have been to their activities in New Hampshire, Massachusetts, Maine, New York, Connecticut, and Rhode Island during the past year. We must be nuts, but we do have fun.

    In 2 weeks I will reach the four year mark since my diagnosis. My oldest grandson was about to graduate from middle school when I heard the news. I thought I wouldn’t live to see Christmas. I was so glad to find these discussion boards as well as my MO and get a quick education about the truth about mbc. So here I am. That grandson will be graduating from high school in 2 1/2 weeks, and I will be there to share the moment. I will undoubtedly have a smile on my face and tears running down my cheeks because that’s just the way I am. I will be happy and proud.

    Where did the time go? I guess I have been so busy living that I didn’t notice how quickly time was passing.

    I still have lots to do. I love life and have no intention of wasting any of it.

    Hugs and prayers from, Lynne



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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2019

    I love reading this thread. I have lurked on this board on and off since I found my lump in August 2017. When I found out I was Stage 4 two months later, this thread and some others gave me hope. My oncologist was hopeful too, which was great. I am so grateful to all the ladies here on BCO who share both the good and the bad.

    “Stage IV life” has been very kind to me so far. Every time I’ve reached out to others for needed help, someone was there. I have rekindled my relationship with my sister and I am so glad I did. I responded well to treatment and side effects have not been awful so far.

    I had begun a major weight loss and exercise program in the year pre diagnosis and I was feeling better than ever when I found my lump. It actually helped that I was feeling good and strong at that time. Long walks enjoying nature kept me sane and gave me strength to do what I needed to do.

    I bought new clothes which I really needed and it felt great to wear cute things again and be comfortable...It helped keep my spirits up and stay focused on living life throughout initial diagnosis and treatment. I had fun with makeup and wigs through chemo. I still wear my wigs even though I have hair now.

    I had not taken a vacation in a long time so once my chemo was done last year I spent two weeks at the beach with family.

    Planning a Caribbean vacation this year.

    I have an online business that I enjoy and also helps pay the billls.

    I have a longer term plan to visit Italy and I have started to learn Italian with Duolingo. Eventually, I will hire a tutor.

    I had piano and guitar lessons as a kid. I bought a guitar a few months ago and I practice 30 minutes at least three times a week.

    Still love long walks and outdoor exercise.

    Life is good . I intend to continue living it fully as long as I am able.

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  • OncoWarrior
    OncoWarrior Member Posts: 5,234
    edited May 2019

    Olma61,

    Thank you for inspiration.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2019

    Big hugs to you, Onco! Hang on to that perky attitude, sis!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2019

    image

    image

    On a cruise out of Venice, and we sailed away down the Grand Canal. I fell in love with the view especially of all the church towers and spires that you can't necessarily see from the ground and of course San Marco Piazza. Just wanted to share, and if anyone is doing their "living list" (I prefer that to bucket list) I highly recommend this!

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited May 2019

    nbnotes..WOW!!

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  • Rosie24
    Rosie24 Member Posts: 1,046
    edited May 2019

    Nbnotes, awesome pics! We got to see that view last summer from our cruise ship too. it was our first ever cruise and we’ve become hooked on cruising and Europe. Partly the experience, and partly my diagnosis in January have resulted in booking 3 more of them, with trip insurance of course. Next is a two week river cruise in October. Hoping to be able to do them all

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  • Lita57
    Lita57 Member Posts: 2,437
    edited May 2019

    I'm living vicariously thru you. Thanks! Wonderful pics.

    L


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2019

    Beautiful! Gorgeous! Thank you so much...more motivation to get my self to Italia pronto!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2019

    Wow! How lovely

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