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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited October 2018

    My 3 year MO visit went well. I do have groin/hip pain due to arthritis. She ordered therapy to help the muscles. With lymph edema therapy and now this, a good part of my week will be in therapy. Not complaining just hate the constant reminder

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited October 2018

    Waving to Cathytoo we were in this journey from say 1. Meadow, Sylvia and others thinking of you all

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2018

    Hello Val,

    I was glad to know that everything went well with your three year MO visit.

    I do hope the therapy will help with the arthritic pain and I also hope you are making progress with the lymphoedema therapy. As you say, it will be taking up a good part of your week but if you get good results it will be worth it.

    Thank you for having me in your thoughts. You are often in mine.

    I have not seen Meadow lately on the thread but I do not have time to come on this thread that often, but I always look for names I know.

    Wishing everyone on this thread all the very best.

    Sylvia xxxx

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited October 2018

    Valstim52....Waving back to you❤️ Tommorow will be three years since I was diagnosed with TN. My bloodwork was good and my mammogram “All OK”‼️ I am so happy to be writing this little message to you and all of our little group that began this hard journey together. I pray that ten years from now we can send a wave and love to each other. Can’t say it’s easy. I live every day to the fullest but also with a little thought in the back of my mind that says “What if if comes back?” I push it aside and move forward. Life is good with some hard bumps along the way as we know first hand. Stay well my friend and keep in touch often.

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited October 2018

    TOMORROW THREE YEARS‼️

    Thinking back over this hard journey and sending love and the very best to my BC sisters who were by my side...

    of course Annie...

    ever present, Sylvia...Meadow...Miss Bee (Brenna), Life Aloft (Kelly), LovesToFly (Jill), Valstim52 (Val), Batesburg (Janet), LoveMyVizsla (Shelly).

    To all the wonderful women I don't know who are just beginning or going through your own journey...I wish you what I wish for myself...a long and healthy life...with this difficult time just a memory. Stay strong. ❤️❤️ Cathy

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  • VLH
    VLH Member Posts: 1,258
    edited October 2018

    Three years...fantastic, Cathytoo!

    Lyn

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited October 2018

    VLH...Lyn...OOPS, sorry for leaving you out. ❤️

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  • VLH
    VLH Member Posts: 1,258
    edited October 2018

    No worries, Cathy. I've not been super active on this topic. I'm just glad you got good news!

    I have my 2 1/2 year mammogram this coming week and am hoping for a favorable report as well.

    Lyn


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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited October 2018

    I am so happy to hear these success stories!! It brings me joy and hope!

    4th chemo today. I am responding very well to chemo. 3.8 cm Tumor was declared "gone" after 2 chemos. I can still feel a tiny lymph node but the big one was also declared gone. Maybe the little lymph node is processing all the dead cells out of my system?

    It's all about sweeping up those last cells... I have few actionable pathways for a second chemo. So I am considering copper chelation as a follow up... great results for non-recurrence, if you have a PCR.

    Anyone else do that?

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  • moth
    moth Member Posts: 4,800
    edited October 2018

    congrats to everyone celebrating anniversaries of NED & thank for checking in with us!




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  • moth
    moth Member Posts: 4,800
    edited October 2018

    cccmc2 - I hope you're feeling better.

    For me what has helped is being very busy (started school in September in an intense 36 month full time continuous program). Between prioritizing sleep, exercise, healthy eating, family, my beloved dogs and oh yeah, schoolwork, there is not much time left for worrying about this bc beast. I just keep moving forward, assuming the best and that this is behind me.

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  • njprn
    njprn Member Posts: 39
    edited October 2018

    6 years and counting!

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  • Batesburg
    Batesburg Member Posts: 199
    edited October 2018

    Yay, Cathy!!!!!

    SO EXCITED for YOU!

    Risk of recurrence plummets after 3 years, as you know. One study estimated down to 5% or so.

    Cheers to YOU!!!!

    Janet

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  • urdrago71
    urdrago71 Member Posts: 559
    edited October 2018

    santabarbarian, thats the most amazing news. Congrats..


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  • Cathytoo
    Cathytoo Member Posts: 667
    edited October 2018

    Batesburg....

    Hey Janet...is it three years from diagnosis, surgery, or end of treatment

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  • urdrago71
    urdrago71 Member Posts: 559
    edited October 2018

    cathytoo, I asked my Oncologist the same thing. Its kind of tricky , from surgery. Or end of radation or after Im done with all my treatments. Up to us as there's not a standard.

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited October 2018

    urdrago71....I think the most important thing is that we keep going and take advantage of every day. Personally, what makes the most sense to me is either surgery date or end of treatment. My surgery was 11-13-15...so i’m still at three years. Unfortunately, we’re always anxious about a recurrence, even years later.

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  • urdrago71
    urdrago71 Member Posts: 559
    edited October 2018

    Cathytoo, I agree..congrats..

    At five years my doc said I wld be considered cured.cannot wait to get to 1 year..than I'll keep counting!



    Questions for TN..has anyone started the Keytruda trial? Looking for suggestions as I have possibility to enroll. Also I will be starting the Xeloda oral pill to help reduce my reoccurrence..

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited October 2018

    I am so happy for those with 'all clear' reports and I send support and strength to those still in the midst of treatments!

    Hugs from NYC

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  • Batesburg
    Batesburg Member Posts: 199
    edited October 2018

    Hi Cathy,

    That is from Johns Hopkins Breast Cancer Center .....and it is 3 years from diagnosis.

    I had a long talk with my integrative PCP yesterday and he is a firm believer that most cancers, if they are going to recur, do so within 14 months......now, I didn't ask if he meant from diagnosis or treatment but common sense tells me from end of treatment.

    Janet

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited October 2018

    Janet..I have to agree with you. It makes sense to me, also, that you should begin counting from the last day of treatment. That said..,my last treatment was July, 2016. Fingers crossed

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2018

    Hello CathyToo,

    I am just popping in to say congratulations on your three years since diagnosis and that all is well.

    It is important for those of us who have finished treatment and are marking anniversaries to pop in to inspire others. I am a few days away from 13 years and 4 months since my diagnosis.

    There are lots of names on the TNs that I do not know from way back, but I remember you, Meadow and Valstim. I have not seen Meadow on the thread in a while. I think we shall always have Annie in our thoughts.

    Best wishes.

    Love.

    Sylvia xxxx

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2018

    Hello Moth,

    I was glad to know all is well with you and that your busy life keeps thoughts about cancer at bay.

    Good luck with your studies.

    Love.

    Sylvia xxxx

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  • Jennifer522
    Jennifer522 Member Posts: 254
    edited October 2018

    On the news today, talking about Vaccine for TNBC from Mayo in Jacksonville, FL. I tried finding the clinical trial but have been unable to pinpoint it.

    I made the mistake of commenting on my local news facebook page. All there is people ranting about big pharma, what they think causes cancer and their magic cure. Not exactly helpful to someone going through it.

    I finish my 8 rounds of Xeloda on Sunday and then that's it for treatment. It's a scary feeling and trying to figure out my new normal.

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  • rdeesides
    rdeesides Member Posts: 459
    edited October 2018

    Jennifer522,

    I would love to do that trial. They also have it at Mayo in Arizona and I'm in SoCal, so it would be about a 5 hour drive. It's so hard rationing your time for all these treatments. I've been lucky to have an employer who has been very understanding, but due to a company reorg, I will be losinig my job soon and a new employer surely won't be so understanding. <sigh>.

    I will look for the trial and if I find it I will post it here.

    R

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  • rdeesides
    rdeesides Member Posts: 459
    edited October 2018

    Here is the link to the vaccine trial.

    https://www.clinicaltrials.gov/ct2/show/NCT03012100?term=vaccine&cond=Triple+Negative+Breast+Cancer&cntry=US&state=US%3AAZ&rank=1

    Note that this is a Phase 2 trial, so my understanding is that they are testing dosage. I would prefer to be in a Stage III trial, but this is promising.

    Rebekah

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  • Parrynd1
    Parrynd1 Member Posts: 408
    edited October 2018

    This sounds promising! Thanks for the link

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  • urdrago71
    urdrago71 Member Posts: 559
    edited October 2018

    Jennifer522,

    It was posted in my April chemo group.


    http://www.ktvu.com/news/mayo-clinic-sees-hope-in-breast-cancer-vaccine

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  • Flynn
    Flynn Member Posts: 307
    edited October 2018

    News story must have gotten quite a bit of notice- I also had someone send me one of the articles.

    I’m not an expert at this at all but i sought a couple second opinions after not getting pcr. One raised concerns with this study about exposure to more Cytoxan since I’ve done AC. Everybody’s situation is different but might be worth asking about if any of you are seriously considering the trial.

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  • urdrago71
    urdrago71 Member Posts: 559
    edited October 2018

    Jennifer, there's also the keyturda trial that I've found in my local area so I would think other hospitals would be offering trial.

    image

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