Calling all TNs

Hi, that really sucks! I am so sorry that you are having to continue to deal with this.

I am dealing with chemo-induced neuropathy now 6 years out and it's getting worse not better. Chemo, like radiation, keeps on giving!

Hi TN girls,

I'm five years out from diagnosis four years out from end of treatment, and a few weeks out from a scary but clear excisional biopsy( who needs two nipples anyhow?)

So far so good with my health post treatment. Mild but annoying neuropathy in my fingers. Very mild lymphedema. Mild brain fog at times. Probably the most annoying issue I've had so far is capsular contracture and banding scar tissue on my radiated side, but I hope to have that resolved soon with a new surgery scheduled when the Covid crises is over.

I love hearing how so many of us are still here. Stay well my friends!

Love to hear survivor and thriver stories! CONGRATS!!!!!!

Good afternoon!!! I am so happy to share that my SO just called to let me know pathology found no signs of cancer in my removed breast!!!! No cancer in the lymph node removed, feeling very blessed right now🙏❤️ Recovering from double mastectomy but very happy to hear the news...thank you to everyone for providing such guidance and support when it was needed the most!

thank you santabarbarian-you have been such an amazing support system and I learned so much from you!!!!!! Thank you for sharing all of your tips and changes for a successful outcome,I truly know these changes helped improve my outcome results!!! Just recovering at this time and enjoying This time with my 8yr old daughter. Stay safe everyone 🙏

Hi AlHusband! So good to hear from you and read your update!

Maryjv - yay!! Great news! wishing you a speedy recovery!

Hope all here are well, - and keep washing those hands !

Virtual hugs from NYC

Thanks, santabarb, - we're trying!

You stay safe, too!

Hawkvand, my stage went from 2B to 3C with the new rubric. But I am here-- and so far, cancer free. TNBC can respond very well to chemo. Mine did and I hope yours does too.

TNBC is hard to predict. Because there are no targeted therapies, it is seen as a bad one to get (as there is only chemo to treat it). Yet it seems to respond better to chemo than other cancers do, and if you can get rid of it with chemo, after 3 years the odds of it coming back are very low (almost zero).

Many people do get a wonderful response from chemo and the cancer is never heard from again. I hope that will be YOU. I am sorry that you have to go through all this while pregnant. You have come to the right place for support.

The staging re-shuffle is confusing and the survival stats apply to the old staging which you can figure out.

The truth about TNBC as well as most BC is the response to treatment is very key and can't be fully predicted. So if you have a non-resposnive cancer and are in stage 1, you are probably in worse shape than being stage 3 with a very responsive cancer.

I think adding carboplatin is a good idea. I was not BRCA but was treated as 'basal like' due to high grade and fast growth and received carboplatin.

You might also read up on/ ask about metformin, melatonin, and other things that can possibly make a difference in TNBC. High dose vitamin C is effective against cancer stem cells.

Hi hawkvand! Santabarbarian provides such wonderful knowledge of TNBC and how we can help to hopefully improve our outcome!! I started taking metformin and melatonin...still taking post chemo. I asked my MO about carboplantin but she did not change my treatment (same as your chemo), she says that is used with metastasis and because I was on my 3rd cycle of AC I just continued along....I did have a CT scan prior to starting taxol (which showed the tumor could no longer be measured) and then after 3 weekly taxol my chemo Was stopped because of severe side effects.. thankfully my SO called and told me pathology from mastectomy reveals complete response and no cancer was found!!! We def respond well to chemo and hopefully it’s enough to keep cancer from returning!! I am 34 and I have a 8 year old, so hoping and praying to have many many more years with her!!! Keeping you in my thoughts and prayers and can’t wait to hear about your delivery and new arrival 🙏❤️

Hawkvand, especially with your particular circumstances, it's understandable that you want to throw everything at the blasted cancer. Make sure that you understand the potential benefit vs. side effects of the platinum agent. Unfortunately, we can't predict who will be the "oddball" / outlier when it comes to statistics, but it can give you something quantifiable to ponder.. Mostly, I just wanted to stop by to wish you a good outcome and smooth treatment.

Lyn

It’s so hard for me to care about side effects at this point honestly. I know future me may think otherwise but the thought of chronic issues is not as scary as cancer right now. I did see one article that said that carboplatin increases pcr in BRCA1 patients by a lot but not overall survival by much so she may be basing it on that or thinking that we’ll see how the ACT goes first and then reassess. That idea scares me so much. I worry that somehow during treatment things are going to spread. I know that’s uncommon but man. My mind is great at imagining awful scenarios. Seeing that you only had ACT makes me feel a bit better though. So many ladies around here had other meds. I know everyone’s case is different but it makes me think we may not be doing enough

Hawkvand, NinjaMeow's idea is a good one. If you live in a place where getting a second opinion is possible, it might confirm for you that you're getting the right treatment or open up other possibilities. I had a friend with inflammatory breast cancer 25 years ago who was at the time part of a HMO, so seeing another doctor was going to cost money if she wanted to do it. She paid out of pocket for a second opinion at MD Anderson (saw Frankie Holmes who ran the clinical trials for Taxol that led to it being used for breast cancer and who was also the lead on the trial for Neulasta). Dr. Holmes wanted to throw everything at the cancer, including Taxol, which was very new at the time. My friend's HMO relented and agreed to treat her as Dr. Holmes suggested. At the time, death rates of IBC were extremely high. She is very much alive and cancer-free today! She had a two year old at the time, who is grown and married.

All such great advice here. I totally agree that a second opinion and a tumor board assessment would be a good idea. We only have one shot at our treatments, the doctors we choose are so crucial to our outcomes.

I was diagnosed with TNBC (BRCA1 positive) almost a year to the day that I lost my sister to TNBC. I about jumped out of my skin with fear and anxiety when I got the biopsy result. I had already had bilateral mastectomy and oopherectomy due to BRCA. So, I got TNBC after mastectomy.

Fear motivated me to consult with doctors at four different Cancer Centers within a two hour radius including Mayo, Northwestern in Chicago, UW Madison and Froedtert in Milwaukee. Having gone through my sister's subpar treatment with her, I knew I couldn't settle for the first doctor “assigned “ to me. She deserved better but she didn't get it.

The MO that I decided to go with is the most brilliant and compassionate woman I've ever met. She was, and still is, my hero. Because of my BRCA mutation she added Carboplatin at the end of my ACT. I also had complete breast and chest wall radiation.

So, here I am five years later. No regrets for my treatment plan. As far as side effects, I have some annoying neuropathy, very mild controlled lymphedema and capsular contracture; really nothing too bad.

My advice to any TNBC patient; don't settle for anything, assert yourself and make sure you are heard. This is your life, make sure that the hands holding it are worthy.

All my best to you,

Rebecca

hawkvand -

My heart really goes out to you. What a crazy time to be navigating all this. On the one hand overwhelming joy for your baby, and on the other hand the sobering fear for your health. And now Covid on top of it all.

You are right, probably not the best time to run around looking for a different doctor. Best to stay where you are.

I’m glad that the tumor board will be meeting up soon. You’ll have more answers then. Stay strong my friend, you’ve got this. If I can help with anything let me know.

Hugs,

Rebecca