Calling all TNs

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

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

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.

Congrats Piperkay!

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!

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!

@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.

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.

@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.

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.

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!

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 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 !