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Calling all TNs

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  • norcals
    norcals Member Posts: 206
    edited March 2022
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    Romashka,

    Thank you for posting and sharing the good news.

    Whenever a TNBC member posts this good news, I get very hopeful. It really lifts my spirits to hear that the treatments do work for many TNBC patients. So thank you, Notdefined, Farfalla6, and Piperkay for helping me and otherswho are still holding our breaths and waiting for year 3 and 5 to come and go.

  • piperkay
    piperkay Member Posts: 132
    edited March 2022
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    I totally understand, norcals! I think I may be pretty close to those statistics anyway, though, because surgery was only about a month after initial diagnosis. And actually, my TNBC diagnosis was only confirmed after surgery because the initial test was inconclusive. Those with neo-adjuvant chemo have a significantly longer period between diagnosis and surgery, and that time makes a real difference, I would think, in the overall analysis.

    And hooray for you, Romashka!

  • mamacure
    mamacure Member Posts: 256
    edited March 2022
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    Congratulations on 3 & 4 years!! That’s lovely to hear. Just heard of a 12 year thriver of TNBC so that made me super happy. I hope we all can get there +++ and that the TNBC vaccine is here soon

  • notdefined
    notdefined Member Posts: 267
    edited April 2022
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    Hi PiperKay and Farfalla6 so glad to hear you crossed the 3 year mark!

    Norcals, I agree that it is interesting that people use the different dates. I had neoadjuvant chemo, and I thought I could use the diagnosis date. That would put me at 3 years and 1 month. But my oncologist insists that it is the surgery date.

    My mammogram came back clean thankfully. Sending healing and good health thoughts to all of you ladies.

  • trishyla
    trishyla Member Posts: 698
    edited April 2022
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    Today marks five years since my double mastectomy. My "cancerversary ".

    Can't believe I made it. I wish, like so many others on this thread, I could know I was I was out of the woods, cancer wise, but unfortunately I had hormone positive cancer as well. But at least it's one less thing to stress over.

    Hope everyone is well.

    Trish

  • norcals
    norcals Member Posts: 206
    edited April 2022
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    trishyla, congrats on hitting the 5th year mark.

    Notdefined, it looks like we’re a few months apart in our Dx and surgery dates. I have a CT scheduled in the next several weeks…hopefully, the CT will be clean. I’ll be glad when we don’t need so many tests and scans

  • serendipity09
    serendipity09 Member Posts: 769
    edited April 2022
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    Trishyla - Congratulations on hitting 5 years!!

  • ARJal
    ARJal Member Posts: 18
    edited April 2022
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    Hi everyone,

    I finished chemo (TC + AC + Keytruda) and had my DMX. I’m recovering well luckily but my pathology report came back with a RCB-II. I have been unable to recover from this emotionally. My MO says that there’s a 50/50 chance of reoccurrence and I feel hopeless. Anyone with and RBC-II success story? Thank you and God bless

  • norcals
    norcals Member Posts: 206
    edited April 2022
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    Hi Arjal.

    I totally understand how you feel. It is a rollercoaster. After 4 AC-T and a few taxol treatments, MO felt that the chemo wasn’t working and I was enrolled in a clinical trial at MD Anderson. Right before I was going to move to Texas (I live in california), they took an MRI and it showed a complete imaging response (so my MRI went from 5+ cm of IDC to zero). So I cancelled the move and continued on with taxol. I was really hopeful for a PCR after the MRI result. Unfortunately, the pathology after surgery showed one positive sentinel node and multiple isolated tumor cells and IDC still in tumor bed. I cried when I saw my pathology report because I knew that there was at least a 70% chance of recurrence (I was stage IIIc/IV at diagnosis). Well, I had radiation (top of neck to bottom of ribs) and Xeloda after surgery. It’s almost 3 years from diagnosis without a recurrence (knock on wood). This is a tough journey. I have seen your post and you have been doing everything you can. In fact, you have survived through some very hard treatment. Hopefully, your team will help you move forward. There’s more treatment to come. Most TBNC will get Xeloda or more immunotherapy. We’re here for you and we understand.

  • ARJal
    ARJal Member Posts: 18
    edited April 2022
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    Hi Norcals,

    Thank you for your kind and encouraging words. Your story gives me hope and I pray you continue to thrive. Yes, I’ll be doing radiation and Xeloda. I am also being screened for a clinical trial. It just really sucks to have residual, it feels like the bad news never end. I try to not live in fear and just enjoy each day but it is so hard at times. I know that Xeloda helps some but not others, hopefully it will help me. Hugs to you, have a blessed day! Thank you for being there

  • serendipity09
    serendipity09 Member Posts: 769
    edited April 2022
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    Arjal - I can empathize with what you are going through. At week 9 of 12 taxol tx I could feel my tumor had grown. The MRI imaging from a week prior did not show the growth and I could not feel it so when I could physically feel the lump a week later, I freaked out. Had my BMX a month later and sure enough, one positive node. It was decided by two RO's that I did not need rads; started Xeloda 6 weeks later, but had to be taken off after 3 cycles as my body just couldn't handle it. A month after stopping Xeloda, I found a lump about a half an inch away from the original tumor. It was ignored (brushed off as a blemish) until July when I had my exchange to implants, when the biopsy came back positive. I was floored. Had to do 5 weeks rads and am now scheduled for more surgery later this summer after I finish Xeloda.

    You are not alone, we are all here for you!

  • ARJal
    ARJal Member Posts: 18
    edited April 2022
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    Hi Serendipity09,

    Thank you for sharing, it’s a tough road isn’t it? I hope that you are doing better on Xeloda. I’ll be joining you soon. While the circumstances are not ideal I’m thankful to find sisters that understand. It makes the road less lonely, thank you for being there.Healing hugs to you!

  • wolfgang
    wolfgang Member Posts: 10
    edited May 2022
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    Hello everyone - I've been waiting on my FISH and it's today. Officially TNBC. Trying to learn all I can.


    41, stage 2, waiting to start treatmrny

  • mamacure
    mamacure Member Posts: 256
    edited May 2022
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    Hi Wolfgang,

    I have TNBC via fish too. There are good treatments, you can do it! We are here for you.

    Best,

    Mama

  • queenkong
    queenkong Member Posts: 48
    edited May 2022
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    ~waves~ A blast from the past, checking in with all the TN peeps as I go about updating my passwords on all the sites I've used to save my privacy. I see there are some things have changed in the forums! I'm still here and it's been a helluva trip. After surviving TN, I developed a second head neck cancer 3 years after the breast cancer and had to deal with that brutal treatment. I'm sorta okay now, dealing with long term radiation side effects, neck pain from scarring along with dental issues, thyroid, etc.,

    I want to read more about the new treatments and what is working.

    I was diagnosed in 2012. Some of my profile seems to be missing and all my saved articles. I guess they had to upgrade.

    Hang in there and keep moving.

  • mamacure
    mamacure Member Posts: 256
    edited June 2022
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    thank you for checking in QueenKong! Oh my, that is just cruel, head/neck cancer after BC!! I am very sorry to hear that. Glad the brutal treatments are behind you. I hope dental issues & other SE will be manageable. Hang in there!

  • HopeHeal
    HopeHeal Member Posts: 137
    edited June 2022
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    Mamacure I have known several cases of BC women getting secondary cancers and surviving. Unbelievable that it struck again but chemo & radiation are also risk factors. Troopers all for going through that!

  • mamacure
    mamacure Member Posts: 256
    edited June 2022
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    Thank you lovemyvizla for the hopeful article!

  • martaj
    martaj Member Posts: 307
    edited June 2022
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    Good morning all, stage 3 triple neg breast cancer, 2 years out, now going in for lung biopsy for many new nodules, Wish me luck. I will be in hospital a few days with chest tube. I just hope and pray benign.

  • serendipity09
    serendipity09 Member Posts: 769
    edited June 2022
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    Martaj - I pray everything goes well for you! <3

  • norcals
    norcals Member Posts: 206
    edited June 2022
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    Martaj,

    I hope the results are benign and that you are healing from your procedure.

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited June 2022
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    thinking of you, Martaj.

    https://www.medscape.com/viewarticle/974910?src=mkm_ret_220630_mscpmrk_BC_top10&uac=245071BZ&impID=4380164

    Promising study shows green tea helps with radiation dermatitis.

  • norcals
    norcals Member Posts: 206
    edited July 2022
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    In the clinical trial thread on this website, there is a recent discussion regarding clinical trials that look at whether depleting copper can reduce metastasis for TNBC. The article below indicates that Cornell/MSK is going to start recruiting for a clinical trial this fall. It looks like participants will be taking pills daily and that the side effects are minimal.
    https://news.cornell.edu/stories/2021/12/reducing-copper-alters-breast-cancer-metabolism

  • mamacure
    mamacure Member Posts: 256
    edited July 2022
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    Thanks ladies! I’ll be drinking green tea daily (multiple sources tout its benefits) Costco has a very good brand tea bags from Japan. And eating foods rich in copper such as avocado, leafy greens, nuts, etc.

  • piperkay
    piperkay Member Posts: 132
    edited July 2022
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    Very interesting study, Norcals! Thanks for sharing. I'll be watching to see what eligibility requirements there are for the upcoming clinical trial.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited July 2022
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    4 years clear for me! Just had all my tests, Hoping for good news for all my TNBC sisters!


  • norcals
    norcals Member Posts: 206
    edited July 2022
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    Great news Santabarbarian! You have been such a great resource to many of us. I’m so glad that your scans were clear. Here’s hoping for another uneventful year

  • cookie54
    cookie54 Member Posts: 662
    edited July 2022
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    Congrats Santabarbarian, great news!Celebrate each and every milestone. Wishing you continued health and happiness