TRIPLE POSITIVE GROUP
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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.
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Annie - thanks. I'm already in there. And I totally understand where you're coming from about doing EVERYTHING. I just want to make sure that what I'm doing also doesn't impact the life I'm currently leading. Quality of life is as important to me as length of life. So I need to weigh that. Chemo has been HARD. And when I started this, they never mentioned AI. So in my mind, I was DONE after chemo and surgery. And that's not the case. So I need to think about all of that. I just want to be finished thinking about cancer. Also - an MO is VERY medication oriented. Always. That's how they are trained. So I need to also think outside the box about where to go from here. Just like a surgeon is always going to lean towards and recommend surgery, because that's how they are trained.
SpecialK - thanks for the other site - I'll look. I did do the Predict site and that was very helpful. AI does not increase my survival rate by more than 5% in any instance, so that will inform my decision.
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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.
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Hello, friends, I am new around here, just diagnosed triple positive in June, and I’ll start TCHP on Thursday. I’m curious how soon I might start to notice a change in the size of this stupid lump. Anyone notice any shrinking after the first or second round? Thanks for all your wisdom and advice
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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.
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Anna -
I'm about to finish up TCHP on Friday. Last round! I had a mid-cycle ultrasound after 3 rounds and I had no more visible evidence in my lymph node and my tumor had shrunk by over 50%. My margins were really "loose" and I could feel my lump, but I really had to dig. After Round 6, I'll have another ultra sound before surgery. Honestly, while I hope that I have a complete response (no tumor at surgery), sometimes I still think I can feel something and sometimes I can't. What I REALLY care about is the complete response in the lymph nodes. It looks like I have that but the surgical biopsy will tell. I had at least one positive when I had my pre-chemo biopsy at diagnosis. If I have a complete response (NED) in the lymph nodes - that increases my rate of non-recurrence by almost 20%. So I'll take more Herceptin or Kadcyla if I still have tumor evidence, gladly, if it's out of the lymph nodes.
Good luck with your treatment and chemo - and ask lots of questions here. I'm in a April 2020 Chemo group, which has been super helpful - and we've become such good friends that we have started a FB group - a mix of ladies who are Triple like us, and some HER2 negative, but all on chemo. We have some May 2020 and a June 2020 person who has joined also, so if that interests you, PM me and I can add you. This is a rough road - chemo is no picnic. But we can all talk you through.
Kris
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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!
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I too found my starting chemo group a fantastic support. The private Facebook account allowed us to share pictures etc. I'm glad you found it. Keeping my fingers crossed for greater shrinkage.
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Kris — sent you a PM via messenger
🌈
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Anyone on here follow specific diet guidelines to enhance treatment of triple positive? I’m recovering from my DMX and getting ready to start Kadcyla and radiation over the next month. I plan on requesting a meeting with a nutritionist, but wanted to get others perspective. I’m going to move our family to a more plant based lifestyle. As a mom of 4, I need to focus on small steps as a family we can change together. Overall, I tried to fed us fairly healthy before my diagnosis, but it’s gone downhill while I was doing chemo and surgery.
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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.
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mmorigan -that's basically what kind of diet we are moving towards too
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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.
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FabMom - as soon as I was diagnosed, It was recommended that I go on keto by multiple people. I consulted a naturopath and I have been following that the entire time I've been on chemo. My blood levels have been great - they told me last week the NEVER see RBC numbers like mine at the end of chemo. I buy organic, grass -fed meat. We eat really good quality fats, and LOTS of veggies. NO sugar, no bad carbs, no alcohol. I will re-evaluate once I'm done with chemo and see how I want to shift but I'm thinking about NOT going on AI, so I will most likely stick with this diet long term.
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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.
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Is there a sweet spot where the likelihood of reoccurence drops off for triple positive? I read that triple negative drops significantly after 5 years and was wondering if that exists for us?
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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!
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i think the answer is a big fat 🤷🏼
Triple Positive is either too new or to small of a sub group to be studied. They really need to step that up.
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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.”
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AnnatheBrave- you bring up a lot of good points. I also like, “the only way out is through” motto. Good luck on your first day of chemo! I went through chemo this last spring with a 5, 3, and 1.5 year old...it’s not a cake walk, but I made it and soon you’ll be on the other side of it.
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"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)
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Anna -
My breast surgeon and MO also told me that if you respond to Herceptin/Perjeta and you have NED or at least NED in the lymph nodes for surgery, that your rate of non-recurrence goes up to something like 97%. HP is a miracle for Triple Positive.
Kris
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Anna - good luck with chemo!! I was fortunate that my only child was 18 when I was diagnosed last year. Moms of young kids who go through chemo have my deepest respect!
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This information is all so interesting to hear and process. I like statistics too, though I hear you—I'm not 97% of a person and I won't have a 97% cure. All the recurrence numbers in the world still have the same bottom line for the individual: either it'll 100% happen or it 100% won't. Just have to live and hope and try and keep showing up.
Thanks to allfor the well wishes about chemo. I'm hoping it's less awful than the worst it could be! I'm glad to hear it wasn't quite as scary as you pictured, Morrigan. And I love these great stats for lymph nodes, wahoomama. I like to do some visualization at night and, in my mind, I talk to these cells and tell them that I'd like them to stop growing and that theymay not spread, and it's usually just a calming little exercise to feel some control and try to connect my body and brain, but for the lymph nodes I'm like “NO BUT FOR REAL, ALL Y'ALL CAN GET THE F*CK OUT!!" 😂🤣
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Just on the recurrence front, and not triple positive-specific, but I had a check in with my RO last week and as we were chatting I asked her when a recurrence most typically shows up. She said most of the returning patients she sees are in the 2-3 year time frame, like after three years the probability of recurrence drops. I still don't love only getting one mammo a year, but I think maybe after next year (which will be three years out for me), maybe I'll relax a little?
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Annathebrave - good luck on the chemo. I have 4 kids, and it wasn’t easy, but it can be done. I haven’t gone over recurrence rates with my oncologist yet. Part of me wonders why. I’m going to do everything possible for the best outcome, and that’s all I can do. The fear of recurrence will linger no matter what. I sure as hell never expected to have such serious and aggressive cancer at 43, so I guess now I realize there is always a chance for anything to happen. All I can do is try my best to be healthy, and enjoy the life I have.
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AnnatheBrave- I’m going to need to try some of this visualization. I’ll be yelling the same thing at my nodes!
Ingerp- Interesting about the reoccurrence rate dropping after 3 years. I had thought that was mostly for TNBC, but haven’t done much research because it can send me down the rabbit hole of worry fast. My MO said my lifetime risk of reoccurrence would be somewhere around 10% or somewhere near the general population odds of getting BC (well I already lost that lottery lol). I’m struggling a lot with reoccurrence fears right now since a coworker had a reoccurrence 5 years post mastectomy (er/pr+ her2- that is now er/pr+ her+) and now recent scans show some possible metastatic. It just makes me so sad. Also had a girl I used to babysit for (now in her 20’s) get diagnosed with brain cancer. I’m so sick of cancer
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The rate for a Her2+ driven recurrence is generally 2-3 years post-treatment. Are there some outliers, yes, but this is generally regarded as status quo. The rapid recurrence rate is one of the aspects drove development of Herceptin because the aggressiveness of Her2+ had such an impact on those diagnosed, but these timelines were established quite a while before the advent of additional anti-Her2+ targeted treatment like Perjeta, Kadcyla, Nerlynx. Of course, Herceptin was offered to patients in those trials that were ER+ and ER-, which is about an even split I believe, so TPBC represents about 10% of the diagnosed breast cancer cases. I participated in a five year Her2+ recurrence prevention vaccine trial and the purpose behind the development of the drug was stopping early recurrence, and the way they tracked success of the vaccine was by looking at short-term recurrence and the vaccine was a success in reducing recurrence in the vaccine arm versus the control arm, beyond the previous norm for Her2+ patients. TNBC has a general five year window beyond which recurrence is rare, but again, there are a few outliers. ER+ driven recurrence risk drops somewhat at five years - thus the magic timeline quoted by many - but it does continue long beyond that at diminishing rates. The interesting thing for TPBC people is that their recurrence rate beyond five years seems to be lower that those who are ER+ and Her2-, but this may also be due to a greater level of treatment intervention earlier in the disease process, or due to the unique qualities of TPBC. Subtype is also important in recurrence, so while we all have Her2+ breast cancer some of us are subtyped ERBB, some Luminal B, and some Luminal A. This affects how breast cancer behaves for us as individuals and also how effective treatment may be.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6310716/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5323135/
https://www.sciencedirect.com/science/article/pii/S0305737214002102
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@SpecialK - any idea what happened with your vaccine trial? Is it still trying to get FDA Approval or was it dropped for some reason?
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morrigan - the trial situation is complicated. I participated in the Phase II portion, but this particular trial was actually for two differing vaccines, so in actuality it was a four armed trial. Two vaccines - GP2 plus a GM-CSF (like Neulasta) and AE37 plus a GM-CSF, plus a control arm for each which was the GM-CSF only. The way patients were selected for which vaccine and control arm they would be sorted into was by tissue typing - like for an organ transplant, with HLA-A2+ in the GP2 arm, and HLA-A2- in the AE37 arm. Nothing to do with breast cancer specifically. I was in the vaccine receiving arm of the GP2 trial. Further complicating this was that the two vaccines were being manufactured by two different pharma companies. After the results from Phase II were known, which was pretty rapidly because of the typical recurrence time for Her2+ patients, there were some issues, and the vaccines - despite promising results - did not get off the ground in a timely fashion, although I believe there is still some research going on. These vaccines were initially developed by the US Military Cancer Institute by Dr. George Peoples, when he was an active duty Colonel. He has now retired and continued this work - which includes a number of other vaccines including E75, which has had more press and some participants on this site, here is a link about that. Here is a link to the trial I did (BCO member fluffqueen also did the same trial at the same time), and some info about results.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7188712/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53232...
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