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Calling all TNs

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  • norcals
    norcals Member Posts: 206
    edited February 2022

    Santabarbarian,

    Congratulations on the twins. I also liked your message about keeping your mind on the purpose for being alive. It is so true and it’s good to remind ourselves of this.

    Enjoy your granddaughters and thanks for sharing the great news.

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited February 2022

    CKelly, Although not the exact regime that you're on, I had the A/C doses divided after my first dose. My dr felt that my body was not handling the dose of both at the same time well. She assured me that even though it took a few more weeks to complete, it would be an equal amount of chemo.

    SantaBarb! How exciting!! Congrats to all of the family!! Enjoy your visit and those babies!!

  • serendipity09
    serendipity09 Member Posts: 769
    edited February 2022

    Congratulations Santabarbarian on the twins! So exciting!!

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited February 2022

    Thanks everyone for your kind wishes. It really is incredibly wonderful! Lucky!!

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2022

    In February 2019 I had the mammogram, US, and biopsy that revealed triple negative IDC and DCIS. Tomorrow I have a mammogram and appt with my BS. The mammo is considered diagnostic, since I had the biopsy in September for what turned out to be a weird scar tissue. I'm hoping since it's diagnostic, I'll get a read on it right away.

    Pre-cancer diagnosis, I assumed I'd live into my 90s. That changed, esp with the tnbc diagnosis. Only recently have I started to believe again that I might have a long life. Of course I know that, even 3 years out since diagnosis, there's opportunity for recurrence. And certainly plenty of time left for a new cancer.

    So I have this weird conversation play out in my head about this. A sort of hurray hurray! about reaching 3 years, and another voice reminding me it wasn't until mid-April that I had surgery, so I'm not really to 3 years yet. And of course, I really want to get out 5 years anyway. Then there are others telling me about the other cancers I could get, the diabetes and strokes that seem to run in my family, etc. There are a lot of loudmouth meanies in my head! :)

    I don't actually expect anything bad to be revealed with tomorrow's scan, esp since I had the stuff done in September. But. You know.

    Anyway, I expect and hope to come back tomorrow and say, See? I told you nothing would be wrong. And there you were, all worried!

  • serendipity09
    serendipity09 Member Posts: 769
    edited February 2022

    MountainMia - I hope everything goes well tomorrow!

    "There are a lot of loudmouth meanies in my head" lol, I'm not the only one who has a bunch of those?!

  • ckelly05
    ckelly05 Member Posts: 6
    edited February 2022

    MountainMia - best of luck tomorrow! Sending lots positive vibes your way that all is fine as you expect. I totally relate to that worry & “meanies” in my head, lol. Apparently they come in strong right after at TNBC diagnosis & take a while to fade away. Surely much quieter after that 5 year mark, although there are always other worries, such is life. I have my 1st post chemo MRI Wednesday. I am hoping for good news too! Take care.

  • Poppy_90
    Poppy_90 Member Posts: 84
    edited February 2022

    Mia,

    I’ll be thinking of you tomorrow. Let us know how it goes.

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited February 2022

    MountainMia, - We know EXACTLY how you feel.

    Try to push any meanies out of your head!

    Looking forward to your good update, as well as CKelly's!

    Hugs from NYC

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2022

    Okay, turn on some music and do a happy dance with me! Mammogram was unremarkable relative to anything new; BS appointment also fine. The BS cut me loose, told me to see the survivorship clinic NP for the next couple of years, go back to an annual screening mammogram. Otherwise no issues.

    Thanks for the good wishes, everyone.

  • maryjv
    maryjv Member Posts: 269
    edited February 2022

    Happy dancing with you right now!!!!!!

  • trishyla
    trishyla Member Posts: 698
    edited February 2022

    Yay, MountainMia. That is such great news. So happy for you.

    Trish

  • Poppy_90
    Poppy_90 Member Posts: 84
    edited February 2022

    Yay, MountainMia! That's wonderful news and such a relief. Be sure to do something special for yourself to celebrate!

  • cookie54
    cookie54 Member Posts: 653
    edited February 2022

    I Loooovvvve to do happy dances, awesome news MountainMia! It's always nice to hear good news, celebrate for sure!

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited February 2022

    Yayyyyyyy!

  • serendipity09
    serendipity09 Member Posts: 769
    edited February 2022

    So happy for you Mia!!!

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited February 2022

    YAYYYY MountainMia! That's just the update I hoped to find here!! =)

  • Kayce234
    Kayce234 Member Posts: 87
    edited February 2022

    mountain mia Such great news!!! 💃💃💃💃💃

  • mamacure
    mamacure Member Posts: 256
    edited February 2022

    Amazing so happy to hear the good news Mountain Mia!! Woop woop

  • PRbonita45
    PRbonita45 Member Posts: 10
    edited February 2022

    CKelly05,

    First, congratulations on completing chemo! I hope you celebrated by doing something special! Our dx look almost identical and the tx is pretty similar as well. I completed my 4 cycles of AC in the middle of January...ummm that was brutal. I had my first Taxol + Carbo + Keytruda on January 25, however my last two weeks of Taxol had to be skipped due to my counts being too low. My MO sent in a prior auth for Neuprogen in order to stimulate my bone marrow so I can continue on my current regimen, however my insurance company denied the request. I was a complete wreck this past Tuesday. I had to allow myself to be in my emotions for that day and then with the help of positive quotes and devotionals, I found the strength to dust myself off and find my positivity and fight again.

    I feel exactly how you do....how does missing two treatments affect my chance of PCR? Will we have to go to a less aggressive tx regimen if she cannot convince insurance to approve the Neuprogen? Will she recommend tacking those two doses on or just drop them? The questions go on and on...

    In love,

    PRbonita45


  • PRbonita45
    PRbonita45 Member Posts: 10
    edited February 2022

    First, congratulations on completing chemo! I hope you celebrated by doing something special! Our dx look almost identical and the tx is pretty similar as well. I completed my 4 cycles of AC in the middle of January...ummm that was brutal. I had my first Taxol + Carbo + Keytruda on January 25, however my last two weeks of Taxol had to be skipped due to my counts being too low. My MO sent in a prior auth for Neuprogen in order to stimulate my bone marrow so I can continue on my current regimen, however my insurance company denied the request. I was a complete wreck this past Tuesday. I had to allow myself to be in my emotions for that day and then with the help of positive quotes and devotionals, I found the strength to dust myself off and find my positivity and fight again.

    I feel exactly how you do....how does missing two treatments affect my chance of PCR? Will we have to go to a less aggressive tx regimen if she cannot convince insurance to approve the Neuprogen? Will she recommend tacking those two doses on or just drop them? The questions go on and on...

    In love,

    PRbonita45

  • notdefined
    notdefined Member Posts: 267
    edited March 2022

    Hi everyone. It has been a while since I have been on these boards. Nice to see some familiar names. To the new people on here, I'm sorry that you joined the club no one wants to be a part of. Thankfully/gratefully, I have been doing well. I just had my 3 year check up with my oncologist and all seems well. My mammogram is scheduled in a couple of weeks. Of course I'm not officially at the 3 year mark until my surgery anniversary in August. Praying that we all heal or continue to stay healthy. I will never forget how these boards saved me from feeling alone. Anyway, just wanted to chime in to say hello.

  • serendipity09
    serendipity09 Member Posts: 769
    edited March 2022

    notdefined - that's so great that your 3 year check up went well! Praying that everything looks good on the mammogram in August. Thanks for coming back to share. Wishing you all the best.

  • farfalla6
    farfalla6 Member Posts: 92
    edited March 2022

    hi all;

    I wanted to check in to say that my three year check in February was all clear! This community is such a great support and I don't post often but wanted to let you all know!

  • norcals
    norcals Member Posts: 206
    edited March 2022

    Notdefined and Farfalla6:

    So glad to hear that you guys are doing well and that you hit year 3. Thanks for sharing the good news.

  • piperkay
    piperkay Member Posts: 132
    edited March 2022

    Making it three for three in the triple neg group, I'll chime in and say I made it safely to the end of my third year, too. Surgery was in December 2018 and March 7, just three (another three!) days ago marked the last chemo. Thank you to everyone here for just being there and knowing what it's been like.

  • norcals
    norcals Member Posts: 206
    edited March 2022

    Great news Piperkay. Thanks for sharing.

    On a completely different topic,I noticed that some use Dx dates to calculate the 3 and 5 year marks and some use surgery dates. For those that have surgery before chemo, it doesn’t seem to be that different in time, but for those of us that have had neoadjuvent chemo before surgery, the calculation is extended by at least 6 months. Most of the articles I’ve read use Dx dates to calculate the time, but I’ve met with several doctors (MO, RO, BS, second and third MO) and they do not have a consensus on what date to use when you have neoadjuvent chemo. I thought most of the statistics on recurrence used Dx dates. Is there new data which explains why surgery dates are used?

  • piperkay
    piperkay Member Posts: 132
    edited March 2022

    I think that is a very valid point, norcals. I did not consult any studies when I decided to use my surgery date to calculate my three year mark. Just thought that because I had surgery first, there would be no other way to calculate it. Tumor was out, and no testing after chemo was done and no testing after radiation was done to determine what effect either of those might have had. And certainly the time between diagnosis and the beginning of any treatment must vary quite widely as would the dates between the time the tumor actually developed and the time of diagnosis. So for me, surgery is the only reliable date, the only one that makes sense for me.

  • romashka
    romashka Member Posts: 24
    edited March 2022

    So happy for all of you. Almost 4 1/2 years now since surgery. Thanks to everyone here for the good company.

  • norcals
    norcals Member Posts: 206
    edited March 2022

    Piperkay,

    Thank you for your response. When I asked my doctors, they all had their own valid reasons for using the dates (Dx or surgery or end of treatment) to calculate the 3 and 5 year “end dates.” I think that the older statistics for recurrence used the Dx dates and also the older definition of TNBC. So, when they looked at data for recurrence, they used Dx dates to see when patients were most likely the recur. For example, an article I read, using data of patients that were diagnosed with TNBC prior to 2015, showed that 75% of recurrence occurred before the third year from diagnosis and the median date of recurrence from the sample of patients was 1.7 years (so all of sample patients that had a recurrence had it by 3 years and 8 months). I know this is nit-picky, but as I get closer to my 3rd year, I’ve become a little obsessed with knowing the exact date for year 3.