Calling all TNs

I hope you hit it out of the park -- and I am in your pocket too!

16 horse's hooves, 4 dog pays, 18 chicken legs and two huma fingers crossed for you and good scan results!

LoveMyVizsla, from my lovely beach vacation in Huntington Beach, CA, I am in your pocket sending you thoughts of sunshine, salty air, and crashing waves!!

good afternoon everyone,

Just curious if anyone else has heard of this trial in Europe?

https://www.reuters.com/article/us-roche-tecentriq/roche-immunotherapy-tecentriq-gains-european-approval-for-breast-cancer-idUSKCN1VJ0JD

urdrago is everything ok with you?

I am doing well too. I am feeling pretty normal. Still seem to need a lot of sleep (more than before) but my energy is good. I had my 1 year checkup and a mammo - clear.

I too have a little numbness/tingles at axillary site and in my upper arm, but it does not bother me. So glad to hear things are going well for you too!

Always wonderful to hear from you long term thrivers!!!

My scans were both normal, yay! But they tried twice to get a vein for blood draw and contrast for the mri, and both times hit valves, so I have two lovely (not) bruises. And, I was wrong. I did graduate to yearly mri and mammograms, but I still see my MO in six months. That is fine. Her ARNP didn’t my exam, and said she can see the edema in my breast. Ugh. At something point, I became lax about doing my manual lymphatic drainage and just quit doing it altogether. This explains the pains I’ve been having in my breast. I really should call and get an appointment with PT to get a jump start on getting it back under control, but they are pretty booked up. They have a great machine that works wonders.

Sorry to ramble on. She did have some alternatives for hot flashes. The gabapentin I had been taking, a micro-dose of Effexor, or acupuncture.

Hello all, my first post here. This 2019 article (link attached) may explain WHY I have such a high oncotype score, high Ki-67, and grade 3 tumor (all hallmarks of being triple negative), despite having very high ER levels. I had already discovered that I have 3 mutations in my FGFR2 gene, all 3 of which predispose to breast cancer. According to this new article, these mutations render ER useless (at the nuclear level). As PR depends on the presence of functioning ER, this could also explain why I am PR-. So, if I have ER, but they don't work, am I essentially triple negative?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542018/

Santabarbarian there is one at CTCA as well. I will try and learn more over the next few weeks and get back to you.

I didn't know about it, but found this: https://www.mayo.edu/research/clinical-trials/cls-20366156

I had my first post-chemo, post radiation follow up with my oncologist at MSKCC. Her recommendations were only: exercise, less than 7 glasses of wine per week, low fat diet. She said no to Melatonin, metformin, low asparagine diet, and a million other things I had researched. I can't be in copper depletion trial and she doesn't recommend I do it on my own. And I'm surprised up to 7 glasses of wine/week were okay with her (even as I'm happy about this, I still feel I should stick to much much less, probably will) So this is the standard of care from a triple negative expert at Memorial.

I'm a physician myself, as is my husband, not in oncology, and I'm turn between the abstemious, if we don't have enough rigorous studies, don't do it mode I was trained in, and my worry about such conservatism. MO emphasized that by doing chemo and radiation I had already done the most important preventive treatment I could do for a node negative triple negative tumor. My husband will be thoroughly annoyed with me if I start taking melatonin or doing other things. Not necessarily meaning I won't, I'm just reporting my location at the intersection of traditional medicine, my own medical training, my fear, and my healthy skepticism about doctors sufficiently appreciating complementary practices.

farfalla,

My home town MO was an eye-roller when I had the onsult with the Integrative MO and followed his advice. But at my one year check up he told me, "I am certain those practices helped you. Your response to treatment was much better than I would have ever predicted."

Mo MO, who is very conservative, had no problem w metformin or melatonin. Both have strong evidence.

Metformin and TNBC:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5959056/

melatonin and TNBC:

http://www.alliedacademies.org/articles/a-phase2-study-of-highdose-pineal-antitumor-hormone-melatonin-as-an-adjuvant-therapy-in-triple-negative-breast-cancer.pdf