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Me Too: A Decade Living With Mbc

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  • SusanR
    SusanR Member Posts: 59
    edited March 2021
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    BlueGirl,

    I haven’t done anything different than others really. My bc is or was highly Estrogen+ at the onset and I got 3 good years on Femara and 5 years of stable on Faslodex alone. I’ve now been through 6 different chemos in the past 6 years. I’ll be changing again on Wed as I’ve had progression. My Mets have always been in the bones and not in a vital organ.

    Best wishes to you

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited March 2021
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    Susan - hoping that the new treatment is successful.

  • elderberry
    elderberry Member Posts: 1,064
    edited March 2021
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    Divine: can you hear me clapping away? So happy for you and the hope you give the rest of us.


  • elderberry
    elderberry Member Posts: 1,064
    edited May 2021
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    Divine: Yay! and the sound of me clapping loudly. I love your posts and you are such an inspiration. Most of all -- you give us hope. And to all the other long distance runners - yay yay yay:


    image

  • ninaca
    ninaca Member Posts: 228
    edited October 2021
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    Hi, Congrats Divine! I am pleased to join your long survivor club. I am a 20 year survivor of MBC. I was lucky to catch it early with tumor markers and an AI kept it NED for 14 years until in no longer worked. ILC is a slow growing cancer that was very responsive to the AI's. Now I've had to deal with new mets in different places and new meds (currently on Xeloda). I celebrate how much time I have been given- to see a future I never expected and to benefit from drugs that have just reached the market (2 months after Ibrance reached the market I discovered my liver mets, which worked for 4 years). I continue to hope and expect for a next positive step.

  • Yolys
    Yolys Member Posts: 2
    edited October 2021
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    Divine, I am so grateful and happy to read your story, you are all very inspirational.

    My mom was diagnosed with metastasic BC and it is now in the bones. Yesterday we received the news that the bone marrow has been compromised. My mom is very strong, and as a family we are supporting her in all the ways possible. Today she will be hospitalized to do simultaneous treatments. I am her only daugter and live in Germany, I have tried to travel a lot to be with her, I feel uncertainty but I wan to be strong for her. I am just loooking for answers. She will received Vilcristina/chemotherapy and corticoids.

    Juliana

  • positive2strong
    positive2strong Member Posts: 209
    edited October 2021
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    Amontro,

    Good to hear you are 12 years and going strong. Sometimes I see just those with bone Mets are long timers and I have bone,lung,liver.

    When I feel good I am hopeful. When I feel bad, have a pain or can’t sleep I fight being depressed. I haven’t taken any pain or antidepressant pills. I am wondering if you take special supplements or follow a certain diet. I just had femur rod surgery Sep 9. Still not walking without a crutch. I did go to Vegas as my son had a conference 5here. Surprisingly it was more than I hav3 done in 6 months. I am looking for any advice, tips, or what kept you moving forward.


  • positive2strong
    positive2strong Member Posts: 209
    edited October 2021
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    Nina,

    Do you take any supplements or on a special diet. I have just finished one month of Ibrance and Faslodex. I don’t know if it is working.


  • positive2strong
    positive2strong Member Posts: 209
    edited October 2021
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    Divine,

    I hope that you post often as it helps me so much to see long time survivors. I am so happy for you and always need advice on what you have done. Some days I am thinking I need to go buy a cemetery lot and then other days I think I should push these thoughts out of my head.

    Did you find planning future events or trips helped. Sometimes I just feel like I am sitting here waiting fo4 the other shoe to drop.

    I have been housebound since June and then had femur surgery Sept 9. I had a bad time with 125 mg Ibrance , lost too much weight…etc now just finished 3 was of Ibrance 100 mg and feel basically good just waiting to be able to walk without a crutch.

    Hearing from you and other long timers really really helps

  • ninaca
    ninaca Member Posts: 228
    edited October 2021
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    Positive- I do not follow a diet, maybe I should, at least I'm thinking about that now. I do try to limit my sugar but once I have a piece of chocolate I can't stop right away! Have your read Radical Remission? It is an excellent book to read about how people combat illness successfully with ways that work for them. I'm about to reread it. I did well on a reduced 100mg Ibrance and fulvestrant, about 4 years with mets resolved. Am on Xeolda now. I sing with 2 barbershop choruses and a quartet, am in a book club (I listen to the books rather than read them), and am in 3 zoom cancer support groups, so I do have something to look forward to- at the moment mostly on zoom. I don't particularly want to travel since side effects from medications make me want to stay in familiar surroundings. Every time a medication stops working it does stop me in my tracks but once I know my new path I feel hopeful. It is getting rougher lately

  • aprilgirl1
    aprilgirl1 Member Posts: 768
    edited October 2021
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    positive2strong, I'm only reaching my 2nd stage iv "cancerversary" , but read your question about making plans . I found that making plans for 4-6 weeks out , something to look forward to really helps me . I do have to plan it around Ibrance blood checks and fulvestrant injection appts. In the beginning , I was seriously afraid to plan too far ahead but ....now if I have a good scan (quarterly) I feel like it's a green light to make plans to visit a friend , take a weekend road trip or see family. Hope your leg get stronger every day and Ibrance and whatever hormone blocking drug you are on is working it's magic :

  • positive2strong
    positive2strong Member Posts: 209
    edited October 2021
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    Nina CA yes, I will get that book. Why are things getting harder? May I ask your age…I am 71

    I know what you mean about staying home but little by little I am trying to overcome it. I actually got really sick in Sept 2020 for a month I took too much Sudafed and I think it se of anxiety etc started it. I didn’t sleep for a month really…but I am over that anxiety but I have been home so long that it is weird to stay somewhere else….but I just made it thru 4 nights in Vegas but we stayed in a smaller hotel that I know very well and we stay on the same floor every time. I think that helped. I just saw an interview with Dr Ruth ? Stage 4 survivor and marathon runner etc she is 39 plus survivo4 and promotes all plant diet no meat no eggs milk etc

  • positive2strong
    positive2strong Member Posts: 209
    edited October 2021
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    Aprilgirl 11

    I am on Faslodex and my onc hasn’t mentioned when I should get a scan to see if the drugs are working. My injections are on the first of the month and I am planning to go see my son race on Nov 17. I just saw him in Vegas for 4 days. I rested really all day and saw him for dinner and hanging out til 3am with him and his employees. We did go to a Blues brother concert and he switched seats to be up in mezzanine because chairs were better than being in the floor. But I had to walk up so many steps and I kept thinking if Ibrance causes diarrhea how will I get up all the steps quickly to the bathroom. Well it didn’t happen an$ this round of Ibrance has been good.
    I enjoy texting with you. Thanks

    Ps I can’t figure out how to update my profile…I had 10 radiation treatments and the femur rod surgery

  • divinemrsm
    divinemrsm Member Posts: 6,084
    edited October 2021
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    Nina, it’s so impressive to know you’re a 20 year survivor of mbc and still going! Thank you for posting, I find it very inspirational.

    Positive2strong, I also loved the Radical Remission book as Nina mentioned and also Mind Over Medicine. I am all for complimentary ways to address living with mbc alongside traditional medicine. Just as we feed our bodies, I also believe in feeding the mind. While I’m realistic, I allow myself to entertain hope, too. Speaking of entertaining, I love to watch great shows or movies that capture my full attention. Comedies are great, we can all use more laughter, but I also like many dramas. Currently I’m watching “Maid” on Netflix.

    Your trip to Vegas sounds like it was great. You did all the right things, stayed where you were comfortable, got rest, enjoyed time with your son and took in a show. Plus you have plans to see him again soon so that is great. It sounds like you did well with surgery especially if you walked up all those steps in Vegas. Do you have an idea of what your holiday plans will be? I’ve been doing some online shopping for Christmas. I learned to keep things simple and not stress over it. (We as women are allowed to enjoy the holidays without getting overly caught up in the prep making things nice for everyone else.) So I give cash for gifts too. Young adults love the color, haha!



  • ninaca
    ninaca Member Posts: 228
    edited October 2021
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    Positive- I'm 75 next week! I don't have the stamina I used to have. To get me moving in the morning I tell "Alexa" to play dance music. She starts a music station where there are definite beats that I can't resist and I start moving and dancing to get my body moving and to get motivated to start my day. I tell her to stop when I've had enough. Also for nighttime, or to get back to sleep, I use the app CALM on my phone which has relaxation sessions, and sleep stories, as a way to focus my attention on things other than stressful things.

  • amontro
    amontro Member Posts: 184
    edited October 2021
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    Positive -

    have been on Prozac the last 5 years and it makes a big difference on how I face life. Is it cheating to use pills to make you feel good? I don't think so. I've stopped taking ativan and decreased remeron (sleeping pill) because I kept losing my balance and started falling in the daytime.

    You have to see what works for you. There's no harm in trying some things that you think will help. I used to be a health nut before mbc, exercising, dieting, no carbs, etc. I am still taking high potency supplements which I believe work for me. I just get this "feeling" about what to take.

    I have been unable to lose weight for a long time. As I said, I dieted and exercised before mbc and I still cannot lose any weight. After mbc, I ate anything I wanted, including sweets, and my weight has been stable. My primary care doc tells me not to lose weight because of the cancer. Go figure.

    Mets to my lung and spine have not changed since mbc day 1, in 2008, and I've been on herceptin and anastrozole since that time. On the other hand, I pre-planned my funeral five years ago and it was not an unpleasant experience. I make short-term and long-term plans and, if I don't feel that I can follow through, I cancel or postpone them.

    Do not put your life on hold! Enjoy the little things every day and you'll appreciate the time you have.

  • Janice54
    Janice54 Member Posts: 23
    edited November 2021
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    Congratulation!!! I am at the 15 year mark. Stage 4 from the start but doing great. Never had to have chemo, radiation or surgery. Feeling great and loving my life with a smile (most of the time).

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,853
    edited November 2021
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    Janice54,

    I just noticed that our stats are very similar with respect to size and grade. I have a bone met and had surgery as well as a port installed because the met was not detected until about six weeks after surgery. Change in tx. No chemo just an AI and I did have rads to the bone met.

  • sunnidays
    sunnidays Member Posts: 153
    edited November 2021
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    It's great to see everyone doing so well, its amazing that the scientific community cant figure out why some do so well and some don't.

    The day will come when people will live a normal or normal-ish life with this disease.

  • ncyogi
    ncyogi Member Posts: 45
    edited November 2021
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    Hi Janice & congratulations on 15 years! Wow! I am also 1 bone met, grade 1 & was wondering about your treatment plan (if you don’t mind sharing)? Thanks!!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,853
    edited November 2021
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    sunnidays,

    I am not a scientist or doctor. I don’t necessarily think that it’s a surprise that scientists can’t figure why some do well and others don’t. I think that bc is a much more complicated disease with a large number of variables, including some that mat not yet be understood. Or, I could be completely wrong!

  • divinemrsm
    divinemrsm Member Posts: 6,084
    edited November 2021
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    Janice, I’m thrilled to know you’re doing so well 15 years after the mbc diagnosis! Thanks for sharing!!!!

  • lexie2002
    lexie2002 Member Posts: 59
    edited November 2021
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    Hi Janice54

    Can I ask what have you done for your diagnosis? You mentioned no chemo, no radiation, no surgery. I am a bit confused. I am also very happy to hear your doing so well.

    Thanks,

    Warm hugs

    Lexie

  • Janice54
    Janice54 Member Posts: 23
    edited December 2021
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    I switched my diet to no white stuff like sugar, flour, potatoes, rice. I stopped eating meat for 11 years. I ate organic foods. Six month after my Dx in 2006 my cancer was ned and stayed that way for 8 years in tamoxifen. Spot was found on my liver and switched to femera for 4 years. I have tolerated all treatment very well. My Dr. calls me a freak. wink, wink. I will take it.

  • moderators
    moderators Posts: 8,082
    edited December 2021
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    Just making sure you know that in addition to our Monday meetups, we now have a 2nd Virtual Meetup TODAY (and now every Wednesday) at 4pm, ET for people with MBC

    To register, go HERE.

    After registering, you will receive a confirmation email containing information about joining the meeting.

    Hope to see you there. Medicating