TRIPLE POSITIVE GROUP

wahoomama87,

My oncologist waited until I completed surgery before she put me on Zoladex + AI. You've got time to think about it. The hormonals are very powerful drugs. Stage IV patients with estrogen positive breast cancer typically begin with the hormonals, and they can keep these patients NEAD (no evidence of active disease) for years.

wahoo - don’t assume you will experience side effects that are severe. Many have mild to none, or the ones they do experience can be mitigated more holistically with diet and exercise. I know you are giving this careful consideration, but it’s also important to note that you will see more complaints about side effects on a site like this. I did receive Prolia during my AI use - my only additional medication -but my osteopenia was pre-existing. I had no side effects from the Prolia and it also may have provided some degree of protection from bone mets.

When I filled my first prescription for letrozole, a generic of Femara, the pharmacist told me that often the fillers and additives in each manufacturer’s formulation can cause some of the side effects patients experience. It can often take some experimentation with different makers or different AIs to find the one that suits best, including the brand name. I did not stay on the same generic and found the one I did best on had the fewest additional ingredients. You can use this site to check on the ingredients in your prescription.

https://dailymed.nlm.nih.gov/dailymed/index.cfm

I just wanted to say this discussion is so helpful to me. I am expecting some AI as I have very strong ER/PR positive and you guys all know so much. I really find the healthy debate enlightening.

I was debating taking an AI, also. I started with Arimidex, but could not take it due to dizziness. I switched to letrozole, had some SE's that were hard to take during months 3-5 but now, at 11 months, I hardly notice any. I do hydrate and move. I really had decided to quit at month 5 when my oncologist said something that brought me up short - he said AI's were as important as chemo. I had every SE and then some with chemo. Had to fight my way through rads. Why give up now? I am taking this pill so that if this cancer comes for me again, I can say I did everything I could, took every treatment, every pill to keep it from coming back. Look at the topic on BC.org Doing Well on AI's. It's very encouraging and informative without all the scary stories.

Hello all. I am not new here but have never posted. I was diagnosed right before Thanksgiving last year. I am now almost completely finished, with just my implants left to go. Those are scheduled for August 18th. I would just like to say how much all you ladies helped me! When I was feeling like I couldn't take one more day I'd get on here and read how encouraging everyone is to each other. Everyone's advice was invaluable! I also just didn't feel so alone. It was comforting to see all these strange things happening to my body and mind were not abnormal and neither was I. So really this is a thank you to all you awesome ladies. Whether you know it or not, you help by sharing these experiences.

Hi!

My lump started shrinking pretty quickly. Maybe, by the second or third round? My lump was visible on the surface of my breast, and my oncologist used a ruler (I know, high tech) to monitor its shrinkage. Hopefully, yours will shrink as well.

Wahoo to you, wahoomama!! So happy for your response and that you’re almost at the finish line, at least for the chemo part! I appreciate the info about the lymph nodes. I had one tested via biopsy and it was positive, and I’m having a CT scan on Wednesday just to look around and confirm there’s no spread (my MO thinks it’ll reassure me).

And thank you, ElaineT, for sharing your experienc too! It must feel good when you can see that it’s all doing something!

I’ve joined the July 2020 chemo group, but it’s nice to check in on the earlier cohorts to get a sense of what’s ahead. Im trying to be mindful and use the mantra “the only way out is through” (from natural childbirth classes!) since it seems applicable here too!

Kris — sent you a PM via messenger

🌈

I'm trying to follow the Mediterranean Diet, for the most part. More Veggies, more fish, less red meat, moved to whole wheat instead of white, cut down on sugar.

I would suggest looking at organic, grass fed, clean sources of food in addition to editing what you eat. Since you are also eating whatever your food sources ate and/or have been sprayed and fertilized with, I feel it is important to look at that. More whole foods, less processed and convenience food, and as many servings of non-starchy colorful vegetables and low glycemic index fruits as you can ingest is a good idea, as well as cutting out empty carb calories. Watch sugars which are hidden in a lot of stuff, but also know that whatever you eat your body will convert to sugar for energy - so, it is good to limit the unnecessary extra.

I just wanted to weigh in on the whole AI thing. Keep in mind most of the people you hear from regarding SEs are the ones who are having a hard time. There's a whole sea of women who are tolerating them just fine, but they are not the people who tend to post. Exercise helps a lot. Also, most of the SEs you do experience are because of the drop in estrogen, so you would likely experience them on any of the three. I started on Anastrozole, switched to Exemestane just for fun after a while, but went back to the Anastrozole.

Smichaels,

My oncologist maintains that most recurrences occur in the first 2-5 years, and I'm past that now. In fact, after five years, she reduced the number of times she sees me from every three months to every six months. I'm also down to an annual mammogram. That's fine by me!

My understanding with triple positive is that there are so many different “flavors” that it’s really hard to generalize. Some of us have very high percentages of HR+, and some are lower. Some are grade 3 and some are grade 2. So because it’s only like 10-20ish% of BCs as it is, and it can further be broken down by different features, it’s hard to get good data and create good cohorts and controls.

And because TCHP (the P part at least) is also relatively new, there’s not a lot of info past 10 years that is relevant. The number I saw somewhere was 6.5% RoR for stage 1 with 1-3 positive nodes, so that’s where my focus lies. Not nothing, but nowhere near a certainty or even a likelihood. That rate was slightly higher than her2-/HR+, slightly lower than her2+/HR-, and well lower than TN. I think the fact that we can take hormone blockers after treatment really helps push us through those early years when the her2+ part might make recurrence more likely.

The other thing is that sometimes I’ve asked my MO a question about data (that the pCR is lower for triple+ than for her2+/HR-, for example) and she’s said that she hasn’t seen that borne out in her practice (I’m at a major medical center with a particularly large BC practice). Not sure if she’s being rosy for me or if looking at data from other hospitals/regions/countries really is so variable that it just doesn’t all apply. She did tell me that when she sees women with recurrences 15-20 years after diagnosis, it’s 99/100 that their original tumor was Her2-.

Recurrence is of course scary to consider, but beginning to breathe easier after 3-5 years would be a hopeful feeling. I’m at the very beginning of all this though, so I shouldn’t get ahead of myself. Today is my daughter’s 5th bday, and tomorrow is my first day of chemo. As with labor, or any lifechallenge, I just keep telling myself “the only way out is through.”

"The other thing is that sometimes I've asked my MO a question about data (that the pCR is lower for triple+ than for her2+/HR-,"

I've seen studies that show Triple+ is lower than HER2+ and that TNBC has the highest success rate. My understanding is that it's due to crosstalk with the HR vs HER2 sometimes canceling each other out. It's one of the reasons I'm interested in doing Nerlynx after Kadcyla.

"She did tell me that when she sees women with recurrences 15-20 years after diagnosis, it's 99/100 that their original tumor was Her2-"

I suspect this is true. Although there's a bunch of possible reasons. Could be the difference in how the initial cancer was treated or just the over abundance of HR+/HER- which is something the 70-80% range for Breast Cancer diagnosis

I'm a stats/numbers kind of person, I seek them out and, would love to see something definitive saying after 10 years it's highly unlikely to return (like HER2+).

However, in the end all the stats in the world don't matter, it's a crap shoot. I'm still in treatment. I'm going to do everything I can to make sure it doesn't come back (Chemo, BMX, Radiation, Kadcyla, Nerlynx, diet, exercise) after that it's up to nature/universe/whatever and, just hope for the best.

@annathebrave - good luck with Chemo. It's not a cake walk but, it's not as scary as you're imagining (at least it wasn't for me - I pictured something quite awful)