Calling all TNs
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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
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I am TN, I find this new forum extremely frustrating and haven't posted in a long time
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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
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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.
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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
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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
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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,
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Congrats piperkay! Celebrate you!
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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.
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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!
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Congrats Piperkay!
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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.
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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!
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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.
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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!
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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
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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.
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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?
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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.
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