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Calling all TNs

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,934
    edited October 2023
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    Hello everyone,

    I was looking to see what had happened to Calling all TNs in this bewildering maze that the forum has become. So many people seem to have got lost in it or have just given up. it is so sad. All in the name of "progress!".

    I found TNs and was surprised to find that the last post was from me last August. It is unbelievable. I was posting to encourage people by letting you know that I had reached 18 years since diagnosis after being told that my case was a poor prognosis.

    Let us try to revive Calling all TNs as well as the thread I started back in 2010 Calling all Triple NegativeBreast Cancer Patient in the UK. Both threads used to be very active and mine was not restricted to the UK.

    Where are you, InspiredbyDolce (Debra)?

    Best wishes

    Sylvia

  • martaj
    martaj Member Posts: 307
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    I am TN, I find this new forum extremely frustrating and haven't posted in a long time

  • moderators
    moderators Posts: 8,287
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    @martaj, we're sorry to hear that! If you're open to it, we'd appreciate any specific feedback. Please, feel free to send us a private message with any issues you may be experiencing. We value your participation in the community, and we're here to help you!

    The Mods

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,934
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    Hello @martaj,

    I was interested to read that you are triple negative. Why not tell us about yourself and your story.

    Sending you Best wishes

    Sylvia.

  • jenjenl
    jenjenl Member Posts: 409
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    This day 11 years ago, they told us I had stage 2 BRCA 1+ triple negative cancer. We were so scared, and the kids were so young (5 and 2.5 yrs old) . It's the club no one ever wants to join. Today, I got to celebrate the day with my main squeeze shopping, lunch at my fav burger joint and pedis. Thankful for every day and all my peeps. I have a scare every year, sometimes multiple times a year, and my care team immediately investigates. Stay strong and always have hope! xo

  • piperkay
    piperkay Member Posts: 132
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    Dropping in to report five years NED! I was diagnosed in November 2018, and today is the five year anniversary of my lumpectomy with chemo and radiation ahead of me. I'm trying not to announce this too far and wide for fear of jinxing it, and no one noticed with me (which confirms that we can get back to a "normal" life, lol) but I did want to share this news with those who need hope. 💕 Anne

  • moderators
    moderators Posts: 8,287
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    That is so wonderful to hear, @piperkay! I know that it will definitely feel helpful to those hoping for similars down the line. Thank you so much for sharing. ☺️❤️

    Warmly,
    The Mods

  • cookie54
    cookie54 Member Posts: 752
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    Congrats piperkay! Celebrate you!

  • notdefined
    notdefined Member Posts: 267
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    Congrats PiperKay! Today is my 5 year date from diagnosis. I don't come on these boards often, but I remember reading some of your posts.

  • piperkay
    piperkay Member Posts: 132
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    And Congrats to you, notdefined! I also remember your unique user name. As you can see, I don't check on here very often anymore either. I think that's a good sign!

  • serendipity09
    serendipity09 Member Posts: 769
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    Congrats Piperkay!

  • [Deleted User]
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    Finished 10 rounds of chemo, now Keytruda, Dmx, rads, and more Keytruda…feeling a bit overwhelmed…hoping for good results. Any tips or items to have on hand especially to get ready for my surgery? Trying to keep my spirits up. Thank you to all who have bravely gone through this treatment journey and are willing to share.

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    I am about here are cancer free! 5.5 years and this is the first January with no blood test or appointment!

    My daughter had twins in 2022 and I have been very busy as a grandmother.

    love to all!

  • cookie54
    cookie54 Member Posts: 752
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    @santabarbarian Hi, So happy to hear you are doing well! Glad you are enjoying being a grandmother and two times the love! Enjoy and keep on going.

  • dawn68
    dawn68 Member Posts: 22
    edited February 29
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    Hi all,

    Not sure how active this site is but thought it is the best place to post my question.

    Having been told that my odds of recurrence with Triple Negative would go down significantly after 5 years, I was disappointed to discover that it has returned after 7 years — same breast, exactly the same spot, same pathology! So they are assuming it is a recurrence not a new primary. I did AC+Abraxane, now have immunotherapy added to the treatment so hoping this will help it stay away for good.

    Anyone else had a recurrence (not new primary) after post-5 years? Just wondering how common this is and whether I should just throw that 5 years stat out the window in my case.

    I know Keytruda is fairly new but just wondering about anyone's experiences in adding Keytruda to the treatment of TN. I went to a forum here on Keytruda but it was mostly about side effects. My question is more on if anyone has had a recurrence after adding Keytruda to their treatment plan. My Onco is proposing I stay on Keytruda (3 week cycle) for a year after chemo to prevent recurrence long term.

    Oh I should add I will be getting a bilateral mastectomy after chemo this time as clearly my right breast is a bit dodgy and needs to go!

  • moderators
    moderators Posts: 8,287
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    Hi, @dawn68, we're so sorry that you're facing this diagnosis again! We know what a shock it can be, especially after the 5 year mark. The risk is certainly highest in that 1-5 year window and falls significantly after year 5, so we understand how difficult this is to process. There are threads in our Recurrence forum that you may find helpful, at the very least to help you know you're not alone.

    The Mods

  • cookie54
    cookie54 Member Posts: 752
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    @dawn68 I'm sorry you are dealing with recurrence especially after breathing a small sigh of relief after the 5 yr mark. I totally understand as I had a recurrence at the 4.5 year mark and I thought I was nearing a little breathing room only to be drug back in.

    For my initial recurrence in 2020 I received Gemzar, Carboplatin and Keytruda cycled in every 3rd week also. In 2020 the standard of care for keytruda was not a year, I believe it was around 17 infusions for me. However I had my last recurrence again in 2022 and sought out another opinion by a specific TNBC MO in NY who has done lots of research in TNBC. She said that their regiment would have been for me to continue on Keytruda for a year as your MO is recommending. I am currently on Keytruda again with Xeloda and I have been holding steady for almost two years now on this treatment.I feel confident that it is helping to hold me stable with no SE's so far.Keytruda is quite an amazing therapy as it has now been approved to be used in 17 different types of cancer.

    I think at this point you can't focus on the 5 year mark being there is nothing you can do about that now. I don't know if there is an exact truth to this but I was told it was a "good" sign that it took that long for my cancer to return. My MO feels it's a sign that it is a slow grower and so far it really has been. This recurrence for me is a grade 2 as my two previous were a grade 3, so a little less aggressive.

    Well I am wishing you all the best as you begin treatment and fingers crossed that your cancer will be destroyed for good! Sending you positive thoughts and strength, hugs.

  • dawn68
    dawn68 Member Posts: 22
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    @cookie54 Thank you much for this information, this is so helpful and great to hear that my MO is on to the latest protocol. I am so sorry to hear about a 3rd recurrence, so frustrating this TNBC! But glad to hear it is stable. Are you actually seeing the effects of the Keytruda on your lung mets?

  • cookie54
    cookie54 Member Posts: 752
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    Oh glad it helped! My mets in my lung have responded well, don't really know which one is holding me stable or the combo. Trusting in the clinical research that the combo seems to be the key for me.

  • rlschaller
    rlschaller Member Posts: 56
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    Hi everyone, new to this thread. I'm TN and now MBC, with cervical spine Mets. My recurrence was quick, only after 6 months from surgery and I was still on Keytruda. I was only off Xeloda for one month before it came back… UGH! Same breast and with spreading to the skin. I have been on Enhertu for the last 6 months which was working, but my recent MRI shows progression in the breast so now I'm being moved to Trodelvy - which I have high hopes for based on what I have read. Has anyone else or is anyone else on Trodelvy? Curious about your experience. Thanks all.

  • cookie54
    cookie54 Member Posts: 752
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    @rischaller Hi, Nice to see you but sorry it's on here! I also have heard great things about Trodelvy and I hope it gets the job done for you. There is a Trodelvy discussion on here if you just search Trodelvy under active topics you should see it. Sending positive thoughts your way.

  • rlschaller
    rlschaller Member Posts: 56
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    @cookie54 thank you for sending the positive thoughts! I love positive thinking, positive imagery, positive words, silver linings and glasses half full. My TNB is aggressive and I’m hoping the trodelvy tames it and clears it , and holds it from growing at least. Glad to read that your lung has responded well, sending positive thoughts right back at ya.

    @dawn68 good luck with they Keytruda, it didn’t work for me but I know the research shows it to be very effective. Sending positive thoughts your way too !

    I’ll let you all know how the TNB responds to the new treatment, and I’ll also find the trodelvy thread, thanks for letting me know it exists .

  • norcals
    norcals Member Posts: 209
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    Hi all.

    I haven’t logged in for awhile. I was hesitant to post this because I’m always afraid to jinx myself, but I remember when I discovered this site how hopeful I felt when I read about those who made it to year 5. Well, today is 5 years from DX. In December 2024, I will be 5 years from surgery. The first three years were constant worry for me, but by year 4, I was able to breathe a little.

    When I was diagnosed, the standard of care was neoadjuvant AC-T then surgery. I was staged at 3c/4 (due to supraclavicular nodes having cancer, there was a dispute as to whether I should be treated as stage 3c or 4). I did not get a PCR, so it was recommended that I take Xeloda for about 6 months. Well, the treatment seems to have worked. So far, I’m NED.

    I want to thank all those who have posted on this site and have provided tips and tricks to deal with treatment and the side effects. The posts have been very helpful to me.

  • vlhvlh
    vlhvlh Member Posts: 1
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    Norcals, great news!

    I haven't visited the forum in ages. I got a mammogram reminder so need to make an appointment, but the most recent one didn't disclose any issues. May 20th marked 8 years since my initial diagnosis.

    I was saddened to see some recurrences shared here. I hope that emerging drug protocols will prove effective.

    Warm Regards, Lyn

  • cookie54
    cookie54 Member Posts: 752
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    Norcal and vphvlh that’s fabulous news! Keep on thriving. Glad you ladies stopped in to let us know your doing well. The TNBC threads have been crickets lately so it’s nice to see others are out there. Keep thriving!

  • rlschaller
    rlschaller Member Posts: 56
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    Hi gals, what great news indeed! Awesome. We are here to celebrate as well as support each other with what’s next, and what is. Feeling it all in community. ❤️

  • norcals
    norcals Member Posts: 209
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    Vlhvlh, Cookie54, Rlschaller:

    Thank you for your well wishes.

    Vlhvlh: your story and survival really helped me in the early stages when I didn’t think there was any hope. It really helped me to know that there were survivors out there with TNBC. My oncology team was great, but they prepared me with the knowledge that I would not likely make it to 5 years. It was really hard for me the first three years. It wasn’t until I felt good enough in year 3.5 (after Dx) to remove my port that I felt that maybe I would make it to year 5. It’s only because of people like you that I decided to let the community here know that I made it to year 5. It made a difference to me and I hope it helps others.

    Cookie54 and Rlschaller: I hope so much that there is a better treatment for mTNBC. I am hoping that Iovance improves its technology and that technologies like it can be a real and effective responsive to metastic BC. Cookie54, you are such a positive presence on this site. When I do log in, I try to catch up on how you are doing. I wish you the best.

  • dawn68
    dawn68 Member Posts: 22
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    @rlschaller sorry to hear about your rapid progression but hoping Trodelvy works for you. Please do keep us posted.

    I finished IV chemo (including Keytruda), started on just Keytruda every 3rd week, and had a bilateral mastectomy with reconstruction last week. Unfortunately the pathology after surgery showed only partial response (85%) from the breast tumour and cancer in my lymph node. I have another surgery scheduled for this coming week so that they can remove and test more lymph nodes. I'm not sure what this means in terms the effectiveness of the chemo and/or Keytruda. My understanding is that the next step for me is oral chemo, Xeloda, but I guess only time will tell if that will be effective.

    What is everyone's routine in terms of follow up to tests? ultrasound, MRI, PETs, x-rays?

  • rlschaller
    rlschaller Member Posts: 56
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    @dawn68 I hope you are healing well and the new surgery goes well. Let us know how surgery goes , and sending hugs in advance. Will be sending you good wishes for a relatively relaxed recovery . In terms of test schedules, right now the standard of care is to go for Pet scan and MRI every 3 months. They might alternate between MRI and breast ultrasound if pending on my insurance .

    I’m doing well. The Trodelvy is going well, started cycle 2 today. Definitely improvement by physical exam, the tumor is lessening and the skin nodules are flattening. The main side effect is a skin allergy , looks like bug bites up and down my legs ugh… showed up over the weekend a week after the 2nd infusion of cycle 1. Good news is that its getting better. Saw my team today before the first infusion of cycle 2, MO prescribed a cream, and I take two antihistamines daily. We’ll keep an eye on it. I also needed a boost for my WBC, and they are up again so it’s clearly a process . I look forward to the Aug 1 pet scan and MRI, fingers crossed it continues to move in the right direction. My TNB is aggressive (grew while on Enhertu, keytruda, and Xeloda) so I’m happy the Trodelvy seems to be working !

  • cookie54
    cookie54 Member Posts: 752
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    rischaller Happy to hear Trodelvy is going pretty well. Sorry about the leg rash hope that improves quickly as it must be so annoying. Fingers crossed that your cancer is being smashed back!