Calling all TNs

moth

LoveMyVizsla, as the saying on this board goes - we're in your pocket!

santabarbarian

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

jrominger

lovemyvizsla. Praying for you now!! We are in your pocket!!

mightlybird01

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

notdefined

LoveMyVizsla-sending positive vibes your way.

PiperKay

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!!

Trishyla

Another one reporting for pocket duty, LovMyVizla. Sending good vibes for the best possible results.

Trish

urdrago71

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

santabarbarian

urdrago there seem to be several US trials with this drug too.

santabarbarian

urdrago is everything ok with you?

urdrago71

Santabarbar, everything is going well for me finished xeloda in July, and mammogram and ultrasound scheduled for sept.16. Ive got a little pain still in lymphnode site. But overall feel good with stiffness in joints. Been camping this summer and plan to continue thru Oct.

How are you doing Santabrabra?

santabarbarian

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!

Sugar77

Hi ladies, just popping in to say hello. I haven't been on here in ages but I never forget. Those who are in treatment, hang in there. All my best.

santabarbarian

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

jrominger

Sugar77 santabarbarian is exactly right!! Thank you for checking in and giving us hope and inspiration!!

LoveMyVizsla

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.

santabarbarian

Vizsla I am so happy to hear your clean scan news!!!

Murfy

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

Has anyone looked into the vaccine trials (for prevention of recurrence) of TNBC? I believe one is at Mayo?

jrominger

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

kber

Santabarbarian - My MO referenced on at the University of Washington. He was keeping his eye on it, but didn't recommend I join in. I'll look for the link.

notdefined

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

santabarbarian

murfy sorry I do not understand the question you posed. Good luck sorting it out. If it's any help, most of the chemos can be used across different 'types' of BC. Though TNBC, the one I got is often given to Her2+ women. It may not be that important other than re the use of anti hormonals.

Farfalla6

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.

sylviaexmouthuk

Hello Sugar77,

It was so nice to see you popping in after all this time. I do remember your posts from many years ago.

I do hope all is well with you. I am now just over 14 years since diagnosis and doing well.

Thinking of you and sending best wishes.

Sylvia xxxx

santabarbarian

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."

moth

Farfalla - nice to get your input. fwiw, I'm sticking to zero alcohol for 2 reasons: WHO is pretty adamant that no safe level is known & it is a carcinogen, and it's empty calories.

Did you get a specific guideline on how much exercise & what intensity?

I'm waffly on the melatonin. The studies I saw were using fairly high doses. I'm taking 3 mg about most days of the week because I'm in nursing school and the switching shifts and weird hours are messing with my sleep. I figure if it helps me sleep and maybe also helps with recurrence, then maybe it's worth it? Did you get the sense that your MO's opinion was that melatonin was useless or that it had actual neg effects?

santabarbarian

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

MountainMia

santabarbarian, you've probably given links before, but can you give some again on the research for metformin? Thanks.

santabarbarian

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