Calling all TNs

Lovemyvizla-

Yes. I just saw the PA for my plastic surgeon today for a follow up appointment since my exchange surgery. She told me no underwire bras

LoveMyViszla - No. I was just yesterday given the green light to wear a non-sports bra. I’ve got a “bra-lette” to wear for now, but I plan to shop this weekend and get some help at Nordstroms. I was an A cup, pre-cancer. I only had a unilateral mastectomy and preferred to remain the same size, but the implant may have put my surgical breast at a B cup. I’m really just grateful that I’m cancer free, at least for now

dear Annie! (cocker_spaniel)

I was too occupied with my health and when i logged back into this website today, the first thing was, i looked for you. Read the message posted by your daughter that you are no more!

We have never met,just like most of us here. But your positive words which were always mixed with some humor will always be remembered! Thanks for being there for everyone..

To connect, we don't always have to physically meet.. this thread is a big example and you are too.

Rest In Peace Annie wherever you are!

Helloo!!! I know, its been quiet here. Here in Ohio, we are questioning if spring is coming. And, those in northest- another nor easter??? Hang in everyone for better times ahead!

FYI.....I am in training for a century bike ride for Peletonia in Columbus, OH in August. To raise money for cancer research. I started a cycling class - too cold to ride outdoors at this point. I wanted to share, just after one class- I feel better emotionally- just so interesting how exercise can improve the mind. Any others experience this?

Hello, TN friends. I hope all are well.

I wanted to share my good news with you all. I've had my lumpectomy after neo-adjuvant chemo and got a pCR. Even thought I'd been given the news from my surgeon, the hospital just posted my post-surgical report this morning. It felt so great to see it in black and white. I feel like I can finally allow myself to believe it.

I see my RO in a few days to set out my radiation plan. MO had been thinking I'd go on Xeloda after radiation but not sure if she'll still want to now.

Good luck to anyone having tests, scans or procedures this week. Hoping for best results possible.

Agatha - so happy for you! You must be so relieved - finally you can cry tears of joy

Congratulations Agatha, it's is good to hear great news!

Good luck for your foundation one results R!

Best wishes to all.

R, what is Foundation One?? yay, Agatha!!!!

Batesburg,

It is genomic testing that they do off the pathology sample of your tumor. I am hoping to get some clues as to what clinical trials may be a good match for me since I had no response to chemo.

BTW, has anyone else on this thread not had any response to chemo? I think I saw one person when I was reading back from the beginning, but this thread is soooo long that I stopped trying to read through it all.

Rebekah

Hello Rebekah,

I am just popping in to say how impressed I was to read that you had started reading the posts from Calling all TNs from the beginning. That is quite an undertaking, but well worth it if you can persevere and do so many pages as you have the time.

There will be a lot of information on this thread going back to 2010 when Titan started it.

I posted on the thread and I was inspired by Titan to start the thread Calling all triple negative breast cancer patients in the UK, because I thought we were in the dark ages here. it has turned out to be a thread for everyone from many countries, including the US.

I have a man posting on my thread who read from the beginning of that one before posting and I thought that was an achievement.

I noticed what you said about no response to chemotherapy. This does happen but you are not expected to get a complete response. I had a large tumour that did shrink a bit, but certainly not completely. I had this before surgery and then a mastectomy followed by radiotherapy and I had no evidence of disease (NED). That was back in 2005/6 when I was going through treatment. I have been fine since.

Wishing you all the very best.

Sylvia

Congratulations, AgathaNYC! What a relief!

I finished my pre-surgery chemo today with Taxol #10. (Had 4 added Carboplatins, lost 2 planned Taxols to blood transfusions.)

I get re-imaged on March 28 and meet with my surgeon on April 4 to learn my options. I'm hoping for a lumpectomy with breast reduction on the other side, but if she says mastectomy, that's, of course, what I'll do.

rdeesides - Here in Atlanta, ANY remaining cancer would mean you'd be asked to take Xeloda for at least 8 cycles (2 weeks on, 1 week off) "if you can tolerate it." Or that's what my MO told me this morning. She's also doing a TNBC clinical trial on Keytruda for Stage III folks like me, if I have any cancer remaining. That would begin after radiation and Xeloda. My second opinion MO is doing a different TNBC trial out of Emory.

I am keeping my port in case I need it for the Keytruda trial. Ugh, but without a clean pathology report, I want all my options open.

My MO at Northside Hospital = Dr. Amelia Zelnak

My 2nd opinion MO at Emory = Dr. Jane Lowe Meisel

R - glad you are getting a second opinion about Xeloda - I agree that it seems like the standardtreatment.

Hi Maggie,

The trial that I know about is for the immunotherapy drug Keytruda. It is NCT02954874. I know Keytruda has worked well for some TNBC patients. The thing I like about this trial is that it has locations all around the country.

There is another one which I am not sure if it is open or not but it is NCT02750358. I believe it is being run by Memorial Sloan Kettering and it is a trial for blocking Androgen receptors.

If you go to ClinicalTrials.gov you can see the trials that may be open to you. Note that most trials are for advanced or recurrent disease, but every so often there are ones for early stage.

Hope that helps.

Rebekah

R- Thanks for the information on the trials.  I wish you success with your second opinion appt next week and that you can feel a level of comfort with your treatment plan.    

Agatha, How did you know if you were eligible for the Androgen trial? My foundation one report doesn't mention anything about androgen. I guess I can call them and ask.

Maggie, thank you. I will keep everyone posted.

R