Fill Out Your Profile to share more about you. Learn more...

Calling all TNs

111771178117911801182

Comments

  • cookie54
    cookie54 Member Posts: 608

    Glad to hear you achieved pCR, fabulous! Best wishes🤞

  • hopefunlive
    hopefunlive Member Posts: 3

    Just finished 12 weeks of Taxol & Carboplatin with Keytruda every 3 weeks. Only the Breast Clip is showing on the ultrasound. Yay! My BS and Oncologist still recommend continuing with the planned treatment, so I will be starting Adriamycin & Cytoxan & Keytruda every 3 weeks for 12 weeks, then Surgery (planned Lumpectomy), Radiation, & more Keytruda. Hoping for the best with this next round because I have heard it's rough.

  • cookie54
    cookie54 Member Posts: 608

    @hopefunlive Yipee way to go! So glad your cancer responded to the chemo. You will get through one step at a time! Sending positivity and strength your way.

  • 5andcounting
    5andcounting Member Posts: 32

    I am now 10 years post my local recurrence and doing fine. I had an in situ tongue cancer in November and had a snip of my tongue cut off so that was fun. No spread but I am being seen every 3 months. The real low blow is that my 28 year old daughter is having a biopsy next week. She has the same ATM gene mutation that I have. She had scheduled a double mx for August so she never had to live with the worry but they found a mass when doing the pre surgery MRI. I am devastated. Praying it is anything but that.

    I read an article of a stage IV survivor of 15 years with triple negative. It was an interesting read and I think we will see more of that with dose dense therapy and immunologics. Hope all is well with everyone. Please include my sweet daughter in your prayers.

  • cookie54
    cookie54 Member Posts: 608

    @5andcounting Hi, Congrats on being 10 years out, that's awesome!

    I am sorry to hear about the stressful situation with your daughter. My daughter is also 28 and I can only imagine what your feeling right now. Sending good vibes and prayers that all is benign, hugs.

  • norcals
    norcals Member Posts: 206

    5andcounting,

    Congratulations on hitting the 10 year mark. My thoughts and prayers are with your daughter.

  • meow0369
    meow0369 Member Posts: 125

    Hi ladies, it's been a while since I've posted. Mountianmia I'm glad to see that you compromised with the dr to do a follow up in 3.5 months and not longer. I made the mistake of not requesting another diagnostic screening even though the dr. should have with me being TN so now I have a secondary tumor. Last year I pulled a chest muscle near my shoulder and armpit and some how developed a knot in that area so the onc dr. ordered a mri and ct scan. I asked him why not an ultrasound for something focused. He said it would show everything. Afterwards he said the results showed nothing and was most likely scar tissue from my recon. It never went away so a year later a different dr ordered an ultrasound for an annual check up for something else. And the results showed a 2cm tumor in the exact place I have the injury. I had this lump for over a year and now have to start this journey all over again. I don't understand why I or the onc didn't request more testing in 3 months. He always made me feel like I was anxious for nothing, even telling my husband and me that I was cured and to go live my life stop being worried. So I told myself it's been 6 years it's time to let go of the worry and paranoia. It's so ironic. I am very disappointed in myself I didn't do more and now my kids and family have to deal with the heartbreak again.

  • cookie54
    cookie54 Member Posts: 608

    meow So sorry to hear your dealing with this again. You didn’t fail yourself, medicine failed you! You did the right thing by addressing the lump but your MO failed to order the correct study. You trusted your doctor as we all do. Please don’t beat yourself up about this ,now you have to focus on getting your plan. Hugs 🤗

  • norcals
    norcals Member Posts: 206

    Meow0369,

    I agree with Cookie54. The doctor should have listened and ordered the ultrasound. It is frustrating when a doctor resists ordering tests. Especially for those of us who have a history of cancer, I don’t understand the reluctance of doctors to order tests that can confirm whether we are dealing with a recurrence.

  • cookie54
    cookie54 Member Posts: 608

    Agree I understand being cautious with invasive studies and radiation exposure. But at least start with a basic ultrasound and go from there. I bet if it was their family member they would be having a STAT study. I worked in radiology many years and was always squeezing some “VIP” on my schedule, just maddening!

  • santabarbarian
    santabarbarian Member Posts: 2,310

    Checking in to say I just had my 5 year scans and blood work… all clear… I am now bumped down to 1x year followups. Yay!

    My last 12 months I have been busy being a grandmother to spunky twin little girls. It's been fun to help them and to hang around with my daughter! Really grateful I have gotten to stick around and be a grandma, I love it.

    Wishing the best to all my TNBC sisters ❤️

  • texkat
    texkat Member Posts: 14

    I haven’t been here in a while, the forum looks really different! I was diagnosed with TNBC in 7/2019, did chemo (AC+T), lumpectomy, radiation, treatment complete in March 2020 (just in time for COVID lockdown!) All followups looking good, I’m at 6 month followups now.
    Happy to see so many good followups posted… I think this thing will always have me a bit nervous.

  • jrominger
    jrominger Member Posts: 342

    It has been a long time since I have been on this forum. “Starting chemo in March of 2019” forum was a blessing. Natalie is now 4 years out, doing great, checkups every 6 months. Loving life, grandchildren and blessed with our 45 year relationship!!

    There was an error displaying this embed. There was an error displaying this embed. There was an error displaying this embed. There was an error displaying this embed. There was an error displaying this embed.

  • norcals
    norcals Member Posts: 206

    Santabarbarian,

    CONGRATS! I’m glad that you have been able to enjoy your time with your family. You have contributed a lot to this forum. I know when I first found this site, your contributions were very helpful. It’s wonderful to hear good news. Thanks for letting us know how you are doing.

  • norcals
    norcals Member Posts: 206

    Texcat,

    It looks like you were dx’d about one month after me. We also had the same treatment, although, I added Xeloda after radiation. Good to hear that you are doing ok. I’m with you about always being a little nervous. I hope to reach 5 years without any surprised. Crossing my fingers for all of us.

  • cookie54
    cookie54 Member Posts: 608

    Congratulations to all the TNBC thrivers! Love to hear positive outcomes. Wish you all continued health,keep going!

  • trishyla1
    trishyla1 Member Posts: 40

    I'll be hitting seven years since diagnosis on August 29th. I had TNBC as well as ER/PR positive IDC. I also had DCIS and LCIS. I had seven tumors, with five kinds of cancer across both breasts.

    I never thought I would make it to this point. Most days just glad to be here.

    Trish

  • norcals
    norcals Member Posts: 206

    trishyla and jrominger,

    Glad to see that you two are also doing well. Big hugs to you both.

  • norcals
    norcals Member Posts: 206

    Cookie54,

    You are such a positive force in this thread. I want the best for you. My long time close friend (became stage IV when I had just completed ACT) started TIL clinical trial for non-small cell lung cancer. It is very promising and MD Anderson will be posting its results from phase 2 clinical trial this year. So far, these TIL trials have been producing very promising results. I have been watching the clinical trials thread (out of respect I will not post on that thread, but I was borderline between IIIc and IV at diagnosis). I hope it produces the results that everyone is hoping that it will.

  • cookie54
    cookie54 Member Posts: 608

    norcals Thank you very much for your kind words! I really want to support all the tnbc ladies the best I can. Out of all the groups I feel like there are less of us and we need to be there for everyone at all stages.

    So glad to hear you’re doing well being between 3C/4, amazing and hopeful! Thanks for sharing. I am blessed at the moment to be oligometastatic at Stage IV. Hoping to defy the odds and stay this way for a long time!🤞🏻Xeloda. Is slowing progression for a year now, fingers crossed.

    Wishing you all the best.

  • lookingforward66
    lookingforward66 Member Posts: 148

    ladies, it has been years since I have been on this site. I joined in 2013. Diagnosed in December of 2012. I am soon to be 77 years old. As of December of last year is was 10 years FREE!
    I am still monitored once a year as I am a bit of a fluke. I had only two chemo infusions before almost losing the game to allergy to chemo. Stopped all after getting out of ICU. Since then monitored for every 3 months in beginning & slowly extended to now once a year. So just to let you know. Light is at the end of that tunnel.
    keep staying positive. It is so important. Much love & prayers to all in the trenches.

  • moderators
    moderators Posts: 7,639

    Thank you for checking, lookingforward66! A story like yours is always welcomed, and we are so glad to hear you're going on 11 years. Wishing you many more years!

    The Mods

  • meow0369
    meow0369 Member Posts: 125

    cookie54 and norcal, thank you for your understanding and support, it means a lot! I hope all is well with every one as can be. I know that it is here that our journey can fully be understood with what we face. I got a second opinion and pet scan was denied so still waiting to find out if it contained or not. Both onco's say I am a special case as I am BRACA 1 and had a bilateral MX. Second onco wasted no time ordering a breast mir, so hopfully I can get in soon and also waiting to confirm it is in fact a second primary or a reoccurrence. This is the frustrating part. I just want to know what is the next step. I need to still do the normal ever day things like take my kids school shopping, etc. I will do so until I get that information. Everyone have a great weekend!

  • cookie54
    cookie54 Member Posts: 608

    @meow0369 Glad to hear you got your second opinion and your getting breast MR. Next best alternative to PET is CT Chest/Abdomen & Pelvis with IV contrast or Dr can appeal PET decision. I guess let's see what happens with MR then you can push for additional scans if needed.

    Waiting is absolute torture and even harder when you are running a house with kids too. It's tough to be strong for everyone when your melting inside. So lets hope you get your MR this week and get the ball rolling.

    Thanks for the update, fingers still crossed for best case scenario. Hugs.

  • AmyBrynn
    AmyBrynn Member Posts: 2

    Nice to hear such success stories. And everyone going through this…you are not alone. It’s a bumpy road, but getting through it and onto smoother paths can happen! I am curious about the follow up schedule everyone has for scans. My Onc says yearly, which scares me. Also, I’m allergic to the CT dye so I can’t have the 3D mammogram imaging. So regular mammo plus ultrasound. What are everyone’s thoughts on that? Also I recall reading about a new blood test for cancer. Does anyone have experience with that? Is anyone on this forum post 5 years after having Keytruda treatment with taxol and carbo/AC?

    Was dx’d October 11, 2022 Taxol & Carboplatin every week, adding in Keytruda every third week for 3 months. AC Chemo in next phase of treatment for 2 months, Keytruda every 6 weeks, for a total of 17 Keytruda treatments (finish Nov 2023) Lumpentomy with sentinel lymph node removed 4/12/23. Complete pathological response thank God. Radiation daily for 6 weeks. Finished on July 13. Dealing with swelling and skin issues but not horrible. I used the mepitel film for 2 weeks which decreased side effects of the radiation. Had to switch to triamcinalone cream because I kept sweating the film off. Oh well. Looking forward to no more treatments. Possibly having breast lift, not that I want to have another surgery, but I want to feel better about myself and hate the breasts right now!

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,895

    Hello everyone,

    I am popping in to say Hello and to say that I have now gone past 18 years since diagnosis of triple negative breast cancer. TNBC was little known in the UK at the time and I was merely told that I was non-hormonal, that tamoxifen was of no use for me and that the prognosis was not good! I ignord all that, delayed treatment for some time, and then went through it. You can see the details below. If I can do it you can do it!

    Be positive.

    Calling all TNs is special to me because it was the first thread that I found about TNs. I was inspired my Titan and went on to create my own thread for the UK. Keep these two threads going.

    I would love to see some of the earlier regular posters popping in to let us know how they are.

    Love and best wishes to all.

    Sylvia xx

  • cookie54
    cookie54 Member Posts: 608

    @sylviaexmouthuk Congrats on your health and success with TNBC. Wishing you all the best!

  • norcals
    norcals Member Posts: 206

    Sylvia, congratulations on 18 years. I hope others pop in and let us know how they’re doing.

  • serendipity09
    serendipity09 Member Posts: 769

    @sylviaexmouthuk congratulations on 18 years! Thank you for sharing. It's posts like these that give me hope!

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,895

    Hello cookie54, norcals, and serendipity09,

    Thank you all for your congratulations. They are much appreciated.

    To serendipity09, I would also like to say how much I have enjoyed the thread where you were sharing all kinds of music. I hope it comes back to the top of the threads. I hope you are alright.

    Love and best wishes to everyone on this special thread.

    Sylvia x