Stage IV NED crew : lets support each other

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Comments

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2018

    Tina,

    High Five my seven year sister!

    Sunset

  • teacher911
    teacher911 Member Posts: 152
    edited August 2018

    Tina, Congratulations!!

    Chrissy, sending positive thoughts your way. You were always so positive to me when I first started in this community.

  • Nel
    Nel Member Posts: 597
    edited August 2018

    Scans yesterday    I asked oncologist to call me today cuz she is leaving on vacation today.  In an effort to be proactive she calls me last night, but the radiologist has not read the scans - so she tries to read.   She repeatedly told me she was not a radiologist, but well OK now.  Tells me she thinks a spread to lungs, shoulder.  Hmmm she calls back this AM and tells me the radiologist has read and there is No Evidence of Disease    Thrilled about that.  About the call last night - not so much!!!   

    I am breathing again

    Be well

    Nel

  • holmes13
    holmes13 Member Posts: 192
    edited August 2018

    nel- so sorry that your mo scared you. She should have Just told you that she wouldn't know anything until today. Congratulations on nead!!!!

  • Bliss58
    Bliss58 Member Posts: 938
    edited September 2018

    Welcome, BabyDuck, and congrats on your 18 mos. NED! I was diagnosed in June 2015 and have been working throughout treatment and recovery. When I was taking chemo, I was lucky to be able to work from home and took off 5 weeks after surgery, but otherwise, I've been working the whole time. For me, it's been a good thing because it helps me to stay "normal" and keep my mind off BC but sometimes, I really wish I could retire; I'm ready! Hope it all works out well for you.

  • screech
    screech Member Posts: 63
    edited September 2018

    Hi Babyduck! To answer your inquiry about working: I left my side job (bartending) but I worked throughout all chemo at my "regular" desk job. Then I took one week off for double mx - I know, crazy, but I felt fine. I then worked throughout radiation. Four years later...................I'm still working my "regular" job. I also returned to my bartending job about six months after completing all treatments to work a breast cancer awareness fundraiser - and just stayed on the schedule from then on! It's a crazy ride!

  • azs40
    azs40 Member Posts: 45
    edited September 2018

    Hi babyduck...I'm just returning to my full time job after 4 months out on LTD. As in today. For me, it was a welcome change. I need a routine and to get my mind off cancer and it feels good to be around people. Every choice is individual of course, but I felt like I could handle it physically. Best of luck no matter what you choose! If you want to PM me, feel free!

    Best,

    A


  • LaurenH
    LaurenH Member Posts: 382
    edited September 2018

    hi baby duck - I have continued working straight through my MBC diagnosis and treatment. I could have taken short term disability but so far I haven’t felt like I needed to. I am only 48 and the primary breadwinner/Health insurance provider for my family so I intend to keep working for as long as possible. However, i also have a very demanding job with long hours and international travel so I’m not sure how long I can keep this schedule. For now, it still makes for a good distraction from my MBC so onward I go

  • holmes13
    holmes13 Member Posts: 192
    edited September 2018

    baby duck- I have been on this rollercoaster for 8 months and I still work a fulltime job. I love it! It helps me to feel like my old self. In fact for the last couple of days I've felt better than my old self. With the right treatment you can do this.

  • singlemom1
    singlemom1 Member Posts: 260
    edited September 2018

    Hi Babyduck,

    I worked for 8 months after my metastatic diagnosis. I am very grateful that I was able to leave through disability. I am raising my daughter completely on my own and have no family support (9 years old at time of stage iv diagnosis) and was having a very difficult time caring for her and working full time. I also had a very demanding job. If my circumstances were different though, I might of found working very helpful to keep my mind occupied and then come home and just rest. I think every situation is different and it would be helpful to look at your entire life circumstances and whether you will still have the ability to take care of yourself and your needs. Will you have time to rest? Is the job very demanding on a cognitive, emotional or physical level? Considering all aspects I think is very important.

  • Chemokaze
    Chemokaze Member Posts: 177
    edited September 2018

    Well, it’s SCAN-apalooza time for me over the next several weeks. Hoping to join this club again!


  • Bliss58
    Bliss58 Member Posts: 938
    edited September 2018

    Hope all goes well for you, Chemokaze. I'm waiting on scan results myself and hoping I'll be staying here.

  • Chemokaze
    Chemokaze Member Posts: 177
    edited September 2018

    Thanks Bliss! All the same to you :-

  • Vevs
    Vevs Member Posts: 81
    edited September 2018

    I’m staying for a bit longer, clear bonescan. Yayyyy

    This always confuses me as ct scan and X-rays show diffuse sclerotic lesions and yet all three bonescans and PET scan have been normal. Anyway, whatever, I’m still NEAD. Good luck to Blissand Chemo with your results. Fingers crossed that we stay here together

    Elen

  • chrissyb
    chrissyb Member Posts: 11,438
    edited September 2018

    Great news Elen!! Long may it last.


  • Bliss58
    Bliss58 Member Posts: 938
    edited September 2018

    Yes, great news, Vevs! I'm happy to report I've gotten the "all's good" report, too, so another few months. Yay!!

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited September 2018

    Vevs and Bliss, yay! Good news! Happy for you!

  • Vevs
    Vevs Member Posts: 81
    edited September 2018

    great news Bliss, it’s fantasticto hear good news here

    Elen x

  • Chemokaze
    Chemokaze Member Posts: 177
    edited October 2018

    Yay! Cheers! We will take any good news we can get!

    I had first breast MRI since bilateral DIEP last year....had a call back for 2 tiny abnormal findings, so after additional imaging it’s believed be fat necrosis - no surprise there....will see breast surgeon this week to discuss.

    Tuesday is PET and brain MRI....will report back soon..

  • Praisethee
    Praisethee Member Posts: 1
    edited October 2018

    All - As of July I now have stage IV metastatic breast cancer (metastisized to bones). In 2008, I was diagnosed with invasive ductal carcinoma (HR+ HER2-) spread to 6 of my lymph nodes. Had bilateral mastectomy; underwent 6 rounds of chemo and radiation. Went along for 10 years no sign of cancer. Now here I am facing this cancer journey again. Currently on Kisqali and letrozole and it appears to be working. Cancer markers have fallen significantly and I am feeling pretty good. I have been doing a much cleaner diet, walking, also using pure essential oils, vitamin supplements. I am currently in a support group and I am the only one with metastatic breast cancer and I have been wanting to reach out to others who are also on this "beyond pink" journey. Any suggestions will be appreciated. Everyone stay strong!

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018

    Welcome Praisethee ! We are all here to support each other.

    My Stage IV dx also came after 10 years of being "cured". I like your phrase "beyond pink". Doing fine at this time and getting use to the side effects. You also have the support when you progress and have to change treatments.

    There are other topics you might like to read to connect to others. There is a Bone Mets thread and a Kisquali thread. Use the search function under the Stage IV forum. There is a lot of info and online friends to meet.


  • holmes13
    holmes13 Member Posts: 192
    edited October 2018

    Great News! As of September I am now a NEADster! After 8 months of treatment I couldn't be happier! I know that it is a month since I found out but I was spending time not thinking about cancer and trying to feel somewhat normal again.

  • Chemokaze
    Chemokaze Member Posts: 177
    edited October 2018

    I'm doing the Verzenio Tango for NEAD!


  • adymaria
    adymaria Member Posts: 16
    edited October 2018

    Question for all Stage 4 NED people-

    Hi all, first of all congrats! I'm stage 4 de novo and just had my first scans after 4 months of being on ibrance/letrozole. I've read about so many ladies on here who are in a similar situation/similar treatment who became NED after only a few months of treatment, so I was very confident I would be NED as well, but unfortunately my tests show that I'm not. I should be happy because the tests do show improvement, but honestly I got my hopes up.

    When I was first diagnosed, I was on a very strict diet of no sugar, no carbs, no diary because I read that these things fed the cancer. For three months, I was strictly on a healthy plant-based diet. But the last month I started cheating on my diet and ate all the things I was supposed to avoid. On weekends, I would have a high-carb dinner such as hamburgers and french fries. I also started drinking a large latte with one pump of sweetener every day. I know this probably sounds silly, but I've been feeling so guilty about these cheats and wondering had I stuck to the my vegan healthy diet for all 4 months would I be NED today? It's just so hard to stick to such a strict diet. So my question for the NED people is, what was your diet like? Were you on a strict diet? Did you cut sugar, carbs and dairy out of your diet or did you eat whatever you want? Thanks

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018

    Hello Adymaria. I just eat normal but I have cut down drastically on refined sugar and alcohol. It took me 9 months to be scanned as "no evidence of active disease". The cancer is still there, just hiding. Frankly, stable or no progression scans are good too. My MO kept reminding me of that. So enjoy your life and make small tolerable changes if it makes you feel better.

    Personally, a good cheeseburger and fries with an occasional margarita make me feel great..plus a good dark chocolate bar...

  • Chemokaze
    Chemokaze Member Posts: 177
    edited October 2018

    I do not eat any meat or fish, poultry, but I must have butter/bread/ half & half for my coffee with agave syrup/ some sweets....I just eat what I want, but do not eat too much of a good thing. I used to drink a soda every day, and I kicked that habit a while ago, but I still have a Dr. Pepper on ice maybe twice a month. Being on this Verzenio has changed what I eat for sure.....it makes me crave potatoes and Cheetos. I drink a lot of filtered water, organic green tea, and walk almostevery day outside.

  • jensgotthis
    jensgotthis Member Posts: 673
    edited October 2018

    hi friends, I’ll be staying around awhile as I just had clean scans again.

    It took me about 9 months to get here once I started Ibrance.

    Adymaria, my diet hasn’t been great at all. I’m actually going to be cleaning it up again. Don’t beat yourself up on this. Ibrance can take several scan appointments to really see a change. Just live a happy life, friend

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2018

    Jensgotthis..it took me 9 months on Ibrance/Letrozole, too to get my best scans. Congrats to you.

  • justg22
    justg22 Member Posts: 18
    edited October 2018

    Fantastic news on the falling markers.  I too was re-diagnosed 10 years after my first diagnosis.  My current regiment is Ibrance and Letrozole.  You mention you are eating heathier and exercises and I am doing the same. May I ask what types of supplementation/vitamins that you take?  My current oncologist and the one before her do not have an opinion on vitamins and I suppose that is because they do not teach that in medical school. The Ibrance/Letrozole has been working for almost three years and for that I am thankful.  I do A LOT of reading and would really like to get out of 'the system' and do things more natural as I believe we all would.  Diet, exercise, meditation and research on MBC has become a full-time job. Also, what exercise regimen do you follow?  It is my goal to eventually get out of 'the system' and maintain my health without these drugs. 

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,273
    edited October 2018

    adymaria,

    I have been NED for seven years. I spent several months after dx eating the “right”way. I was miserable. It became a crazy, compulsive time. I fought with my daughter as she sought to “help”maintain this super clean eating regimen. Then I decided two things; 1) my diet had been pretty clean to begin with but I still got bc 2) the enjoyment of food and treats brought me more happiness and less guilt than an austere diet. Not having to stress about everything that goes into my mouth is a good choice for me.

    This may not work for everyone, some people want a more active approach, but my point is don’t stress about your diet and don’t blame your die