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

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

    I'm a music professor, and this past April, I decided that I wanted to do a full recital with some pieces that I'd worked on but never gotten to perform. I knew my next treatment options would be more standardized chemo; so, I wanted to try to get it done this fall before it became harder or even impossible to do. Unfortunately, we discovered that the Xeloda completely stopped working right before school started back, but my MO was amazing working with me to get SBRT completed with the goal of starting Gemzar so that my off week would be the week of my recital. I've had really low counts, but I was able to see all of my hard work through to the performance last night. So thankful to have been able to do this, and just wanted to share! Hope everyone is doing well!

    I image

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  • BevJen
    BevJen Member Posts: 2,523
    edited October 2019

    Such a beautiful picture, Nancy! And so happy that you got to do this!

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

    I love your pic Nancy! I have always wished I had musical talent, but since that didn’t happen, I admire those who do have the talent!


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

    Thanks for sharing that NBnotes! That’s great that everything could come together for it to happen.

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  • bella2013
    bella2013 Member Posts: 489
    edited December 2019

    Congrats, NBNotes! So happy to hear you were able to see this through!

    Prayers 🙏 & hugs (())

    Bella 2013

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  • Barrelracer13
    Barrelracer13 Member Posts: 7
    edited October 2019

    Thank you for what you wrote!  I definitely can relate. It was also true for me that with that stage 4 diagnosis I was so scared to think I didn’t have much time left. But as time goes on (over a year and a half later) I’m doing really pretty good. I feel good more than I feel bad. I have many things to look forward to which I think helps a lot. I really liked what you said about not letting it steal your life any sooner than it has too. 

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  • Bright55
    Bright55 Member Posts: 176
    edited October 2019

    🤩stellar performance my dear ..we can reach for the stars might take us a bit longer but that is what warrior women are famous for

    Cheers

    Bright in hope

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  • ts542001
    ts542001 Member Posts: 56
    edited October 2019

    congrats. what a great achievement!!!

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

    Beautiful! I love it!

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited October 2019

    Nancy, beautiful picture of you! So very pleased for you that you were able to see this project through. Sorry to hear the Xeloda failed, but wish you all the best for the next treatment kicking back this damned disease!

    Welcome Barrelracer. This is definitely the place for positivity and sharing those good times we still can have and share in our lives.

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

    Thanks to all! I knew you would understand more than most about being able to accomplish this!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited October 2019

    Nancy,

    Thrilled for you! Keep going for the gusto!

    Tina


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

    I know I mentioned in an earlier post that my long time oncologist was moving. She told me this back in the summer, but I received the official letter from my medical provider today. It said that she was leaving for personal reasons. Now, I know that she is moving, with her husband,back to their home country so that they can care for their elderly parents. In a childish fit of pique I moaned, “ But what about me? What about my needs and personal reasons?" I am not taking this well. I am in no mood to get to know another mo and have her get to know me. Maybe I just need a good night's sleep 😴

    I have sympathy for her and she doesn't know what she'll do as she's not licensed to practice in her country, but dang, we had an excellent relationship and I trusted her completely. Good bye Dr. Song! I will truly miss you 😢


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  • Chicagoan
    Chicagoan Member Posts: 728
    edited October 2019

    Caryn,

    That sounds like a huge loss. I too have an MO that I like and trust-she makes me feel as secure as one can with MBC. Were you able to send your MO a note or little gift to express your appreciation? I hope that you find someone else with whom you have a good rapport. As your thread reminds us, life goes on with MBC. Best wishes to you during this transition.

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited October 2019

    If any consolation my lovely Oncologist is also leaving.... going back to Malaysia after her time here in Scotland. But no one told me until she was going until she was gone! That was not good...

    In fairness she was not the Onc originally on my case and I was not happy about being ‘punted’ to her without any prior knowledge in the first instance.

    Now I am apparently with the original Onc.... we’ll see if that happens!


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

    Oh Caryn, so sorry, I totally understand as I am still waiting to meet a lovely Oncologist......I had one briefly while I was in hospital for a few weeks but she is not available to me now as she is a radiotherapy oncologist...one who gets you truly is invaluable...can you ask her who she might suggest for you?


    xx

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

    Hi Lily,

    Thanks for your support. I have an unusual health care situation in that I belong to an all inclusive HMO. They have their own facilities from doctors to hospital, labs, pharmacies etc. often located on large campuses. I love everything about them, especially the fact that all records are centralized and and any doctor can see everything about my medical history with a few mouse clicks. Their system is huge and they have smaller satellite facilities all over my state. The one restriction is that I can only use their facilities and their doctors (who are salaried!). Fortunately I have many choices and my departing mo did make a recommendation so I hope she will be a good fit for me. Take care

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

    Nancy congratulations 🎊🎈🍾🎉 I love this pic of you and thank you for sharing this part of you, with us!! I am so glad you were able to make this happen and it is a true inspiration to keep having goals and dreams. Brava!!!!! 👏🏾 👏🏾👏🏾👏🏾

    Caryn - oh I totally get the grief around the loss of a great provider!! My therapist whose been with me since the start of this MBC journey told me a couple sessions ago that she’ll be retiring in a year. Incredibly professional of her to give me so much notice but I did cry while congratulating her. And I said, “you can’t goooooooo!!!” which I felt was incredibly appropriate for the moment 😝

    I hope for all of us losing great doctors that we are able to find another one. Let us not settle!

    Hugs,

    Brenda

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2019

    bum

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

    Brenda,

    Just saw your post. I think a lot of people, not just cancer patients, get attached to a good doctor. My younger dd had my two youngest grandchildren fairly close together. She said she did because she really liked her ob, who was planning to retire soon. She wanted to make sure that her second baby was delivered before her ob retired 😂 .

    Spookiesmom,

    Are you calling us all bums?

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2019

    Oh my goodness, dumb phone did it again. Bump. Forgot to put . there. Sorry 🥰🥰🥰

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  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 43
    edited October 2019

    Hello my mon have a breast cancer mestatis on bone and she have a pain in his bone now .......so what s your advice we should go to doctor for controle the pain and she take treatement for his pain ???

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

    ZZZAAAZZZAAA,

    This thread is not the best place for discussing bone mets, as it focuses on how some of us lead a fairly normal life. Here’s a link to the bone mets thread and I have replied to your pm. Take care.

    https://community.breastcancer.org/forum/8/topics/789492?page=731#idx_21901

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  • arolsson
    arolsson Member Posts: 118
    edited November 2019

    I am 2,5 years in to a stage 4 diagnosis, was stage iii in 2012.

    I am trying to follow threads but don't seem to get much respone or traction. I think it may be because I am not so internet savvy?

    I think that part of it is that it is very different being a patient outside of the US. The whole system seems to be very different over there.

    I have tried without success to fill in the forms that the moderators want but it is hard when my tumor biology has changed and the terms are different.

    In any case I am running out of options after 6 treatments post IV diagnosis. I have no "caregivers" (though--what a wonderful idea, sign me up!" and am in limbo again after failing the taxols, capecetabin, navelebine, capecetabin and erubulin. ..

    is there anybody out there?

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  • DorothyB
    DorothyB Member Posts: 305
    edited November 2019

    arolsson, I'm sorry you are having trouble feeling like you can fit in and communicate well here. Maybe try copying this post into a new topic so that it shows up better?

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

    arolsson I’m sorry for your frustrations. We are here!

    Any chance you’ve tried reaching out to the moderators with a private message and ask them for help with posting? Maybe they have a better understanding of why it’s been difficulty for you?

    where are you located? For sure there’s differences in health care systems in different countries around the world. Some are amazing and some not very good.


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

    arolsson,

    To add your diagnosis to your signature line, click on settings (last listing on left side menu), and then answer each section as appropriate. Make sure to mark each selection as public so it appears in your signature line. This will allow anyone reading your post to understand your diagnosis and treatments and respond to you.

    That being said, this is not the best thread for treatment or medical opinions as it focuses, mainly, on the ways in which some stage IV patients lead relatively normal lives. If you want, you can respond to me here or via private message and let me know the details of your dx and then I can give you thinks to threads which best fit your circumstances. BTW, we have many members who are not in the US and we can usually manage to figure out differences in terminology and medical systems. All the best

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

    Hey Aronsson I am not in the USA either but I have found getting responses really is down to where you post....... I hope you stay and can find some support too xx

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited November 2019

    Hi all. Just checking to wish Happy Thanksgiving to those in the U.S. celebrating today.

    This is my 5th holiday since dx, and I am very thankful to still be here!

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

    Same to you, bliss58 and to everyone who reads this! Today is Thanksgiving #3 for me since diagnosis and I am thankful as well. Looking forward to seeing my family this afternoon and having some fun. xo

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