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Topic: TRIPLE POSITIVE GROUP

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 31, 2011 07:30AM - edited Dec 10, 2012 08:55AM by TonLee

TonLee wrote:

This is primarily for people who find themselves with THREE +'s by their diagnosis. 

If you are new to breast cancer, please click on the link below and read.  It is "What I Wish I Knew At the Beginning of Treatment."

http://community.breastcancer.org/forum/6/topic/797454



IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Nov 2, 2021 09:30AM morrigan_2575 wrote:

laughinggull did Nerlynx.

I'm trying to convince my MO to let me try it after my Vaccine Trial is up. He doesn't think it's necessary because I did Kadcyla and, there's no trial showing Nerlynx rates after Kadcyla. But I want to start in March, we'll see.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/5/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/5/2020 Herceptin (trastuzumab) Targeted Therapy 2/5/2020 Perjeta (pertuzumab) Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Surgery 6/19/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/6/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/10/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 2, 2021 02:20PM BigPeaches wrote:

Just an FYI, I shave my head every summer. It came back extremely thin and even bald in spots so as soon as it gets warm, I shave it. It's so nice in the summer :)

Dx 6/11/2008, IDC, Right, 2cm, Stage IIA, Grade 2, 0/0 nodes, ER+/PR+, HER2+ Surgery 7/17/2008 Mastectomy: Right Chemotherapy 8/18/2008 AT Targeted Therapy 8/18/2008 Herceptin (trastuzumab) Hormonal Therapy 12/31/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/27/2018, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2+ Radiation Therapy 3/27/2018 External: Bone Targeted Therapy 5/14/2018 Herceptin (trastuzumab) Chemotherapy 5/15/2018 Taxotere (docetaxel) Targeted Therapy 5/15/2018 Perjeta (pertuzumab) Hormonal Therapy 8/28/2018 Arimidex (anastrozole) Hormonal Therapy 8/29/2018 Zoladex (goserelin)
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Nov 2, 2021 09:46PM momwriter wrote:

Moody,

Why did you switch? Maybe it's just taking a while for the body to adjust. I have to start one of the AI's after 8 years on tamox but don't know which one. I want the easiest one if there is such a thing. Hard to live without sleep though so hope that changes for you. Good luck!


Dx 9/2012, IDC, Stage IIB, 3 cm, Grade 3, micromets in 3/7 nodes, ER+,PR+,HER+, Affinity trial Surgery 10/18/2012 Mastectomy: Left Surgery 11/4/2012 Lymph node removal: Left, Underarm/Axillary Chemotherapy 12/2/2012 Adriamycin (doxorubicin), Taxol (paclitaxel) Targeted Therapy 1/21/2013 Herceptin (trastuzumab) Radiation Therapy 5/19/2013 Hormonal Therapy 6/14/2013
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Nov 2, 2021 10:52PM 1946Taco wrote:

momwriter - every MO seems to have a favorite to start. I had fewer SEs with femora than arimidex but you will hear a variety of experiences. Be certain to talk honestly with your MO about your reactions. A lot of people keep journals to track them. Pay attention to the manufacturer too as different "fillers" are added. Your MO should work with your insurance plan if you need a brand name.

Also remember that people who are doing well are less likely to visit and post here. There is a thread "doing well on AI's" or something like that.

We all have difference tolerance for the SE's too. Mine was pretty low - but I was over 70 at diagnosis and appreciate that for younger women, the scales balance differently.

Dx 11/22/2016, IDC: Tubular, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Radiation Therapy 12/28/2016 Balloon-catheter Targeted Therapy 2/2/2017 Herceptin (trastuzumab) Chemotherapy 2/2/2017 Taxol (paclitaxel) Hormonal Therapy 12/3/2017 Femara (letrozole) Hormonal Therapy Arimidex (anastrozole)
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Nov 3, 2021 12:03AM momwriter wrote:

Taco,

Thanks. I am 56. Thanks for the suggestions. It's been interesting being off of Tamoxifen and seeing what symptoms were due to that and what are due to me. For the most part I tolerated tamox well, had no real bad side effects, but I felt towards the end my body was getting tired of it- I was getting signs of neuropathy (prickling in feet) and I started to worry. But I really don't want hair loss or bone loss form the AI. I will take my biotin and keep exercising and see what else others do to ward off side effects. Time to dust off my Wonder Woman bracelets!

Dx 9/2012, IDC, Stage IIB, 3 cm, Grade 3, micromets in 3/7 nodes, ER+,PR+,HER+, Affinity trial Surgery 10/18/2012 Mastectomy: Left Surgery 11/4/2012 Lymph node removal: Left, Underarm/Axillary Chemotherapy 12/2/2012 Adriamycin (doxorubicin), Taxol (paclitaxel) Targeted Therapy 1/21/2013 Herceptin (trastuzumab) Radiation Therapy 5/19/2013 Hormonal Therapy 6/14/2013
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Nov 3, 2021 12:18AM momwriter wrote:

Elaine,

Have you stayed on the same AI the whole time or switched it up? How have you tolerated it? Do you do anything to mitigate side effects?

Dx 9/2012, IDC, Stage IIB, 3 cm, Grade 3, micromets in 3/7 nodes, ER+,PR+,HER+, Affinity trial Surgery 10/18/2012 Mastectomy: Left Surgery 11/4/2012 Lymph node removal: Left, Underarm/Axillary Chemotherapy 12/2/2012 Adriamycin (doxorubicin), Taxol (paclitaxel) Targeted Therapy 1/21/2013 Herceptin (trastuzumab) Radiation Therapy 5/19/2013 Hormonal Therapy 6/14/2013
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Nov 3, 2021 08:12AM ElaineTherese wrote:

momwriter,

I have been on Aromasin + Zoladex for 6.5 years. I will be doing 7 years on this regimen. At first, I had hot flashes and was moody, but my oncologist put me on Celexa, which solved that. Then, I developed full-blown osteoporosis, but my MO put me on Prolia, and my bone density improved to osteopenia. Recently, my feet have been hurting but after seeing a foot doctor, it turns out that I have good old-fashioned arthritis and it has nothing to to with Aromasin + Zoladex.

My hair has been fine (was always limp and stringy), but I have gained weight on this regimen. It's also very difficult to lose these extra pounds. Otherwise, Aromasin + Zoladex has been tolerable.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Nov 3, 2021 10:46PM 1946Taco wrote:

Don't you just hate it when you have to take one drug to counteract the SE's from another....

Dx 11/22/2016, IDC: Tubular, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Radiation Therapy 12/28/2016 Balloon-catheter Targeted Therapy 2/2/2017 Herceptin (trastuzumab) Chemotherapy 2/2/2017 Taxol (paclitaxel) Hormonal Therapy 12/3/2017 Femara (letrozole) Hormonal Therapy Arimidex (anastrozole)
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Nov 4, 2021 04:12PM gamzu710 wrote:

My nurse brought up subcutaneous Herceptin injections when I finish with Taxol as a way to save time. Has anyone done this? I've heard the injections hurt and I told her that, but she said it's just a "little bit stingy for 5 minutes" and that she had noticed I was a "tough cookie" so she thought I should consider the idea. Apparently not all insurance covers it, though mine has been pretty good. This idea didn't come from my oncologist AFAIK so I don't know what she will say, but it's sending me off researching.

I'm guessing it's Hylecta she's talking about? Phesgo wouldn't make sense because I'm not getting Perjeta. Painful I can deal with but it's evidence of the same efficacy as IV Herceptin that I'm after. I don't want something new if there's no proof it works as well. Has anyone done this?

Surgery 7/28/2021 Lumpectomy: Right; Lymph node removal: Sentinel Dx 8/3/2021, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ Chemotherapy 10/20/2021 Taxol (paclitaxel) Targeted Therapy 10/21/2021 Herceptin (trastuzumab)
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Nov 4, 2021 09:14PM Olma61 wrote:

gamzu - Herceptin Hylecta was approved by the FDA based on two trials that showed comparable efficacy. Here is the info -

https://www.fda.gov/drugs/drug-approvals-and-databases/fda-approves-new-formulation-herceptin-subcutaneous-use

FWIW - I am Stage IV and in treatment indefinitely. I was NED on H&P infusions plus anastrozole. I switched to Hylecta in March 2020 and was on it (with Perjeta infusions) until July of this year when I switched to PHESGO. My scans have continued to showNED throughout the treatment changes.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Nov 5, 2021 01:37AM gamzu710 wrote:

Thanks, Olma61--that's the information I was looking for!

My liver numbers were good today, even lower than last week, but I'm starting to be concerned about my ANC, which tanked from 3.1 last week to 1.5 this week. Worried they will make me skip a week if it continues. Do they ever do Neulasta or Neupogen shots on weekly Taxol?

Surgery 7/28/2021 Lumpectomy: Right; Lymph node removal: Sentinel Dx 8/3/2021, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ Chemotherapy 10/20/2021 Taxol (paclitaxel) Targeted Therapy 10/21/2021 Herceptin (trastuzumab)
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Nov 5, 2021 03:12AM SmoothOperator78 wrote:

gamzu710 - good to hear about your LFTs. Mine are slowly creeping up again, ALT is in the 50s.

When I asked about how they handled neutropenia, my MO said the key number was 1.0 in their practice. No Neulasta for mild neutropenia on Weekly Taxol here, just a day or two delay of it gets below . I went down to 1.5 a few weeks ago and there was no delay or reduction.

Dx 7/20/2021, IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/5/2021 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/31/2021 Taxol (paclitaxel) Targeted Therapy 8/31/2021 Herceptin (trastuzumab) Radiation Therapy 12/16/2021 Whole-breast: Breast
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Nov 5, 2021 09:10AM - edited Nov 6, 2021 10:13AM by 1982M

my neutrophils went down to 1.45 after my influenza vaccine and popped right back up. I have had a few plummets of my lymphocytes etc and everything rebounds.

I read some journal articles on weekly taxol side effects and significant neutropenia is a rarer side effect.


Dx 7/13/2021, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/12/2021 Lumpectomy: Left; Lymph node removal: Sentinel Dx 9/3/2021, DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/22/2021 Herceptin (trastuzumab) Chemotherapy 9/22/2021 Taxol (paclitaxel)
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Nov 5, 2021 10:29AM SpecialK wrote:

gamzu - I am sure your MO will watch your WBC and ANC carefully if you have had this drop early on. Neulasta cannot be used with weekly Taxol because it requires a longer duration between infusions, it is used with other regimens. It has to be given 24 hours post-infusion, and 14 days before the next infusion. Neupogen can be used with weekly Taxol though.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Nov 5, 2021 11:45AM - edited Nov 5, 2021 11:46AM by gamzu710

My baseline was 2.1 but that was 3 days post Moderna booster which I think messed with things. After the first dose it was 3.1, but yeah, my concern is it already dropping to 1.5 after just 2 doses of Taxol. Glad to hear some of you had experience with it stabilizing! Maybe that will happen for me, too; seeing it drop so much after only 2 infusions is a bit discouraging and unexpected, though. I will definitely push for Neupogen shots over delaying doses if possible, though, if it doesn't rebound; after my egg freezing experience I feel confident in my ability to manage self-injections of pretty much anything.

Surgery 7/28/2021 Lumpectomy: Right; Lymph node removal: Sentinel Dx 8/3/2021, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ Chemotherapy 10/20/2021 Taxol (paclitaxel) Targeted Therapy 10/21/2021 Herceptin (trastuzumab)
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Nov 6, 2021 12:53AM Phelps128 wrote:

Hello All,


I was just diagnosed with triple positive IDC today (not staged). The last three days have been a roller coaster ride. I am so scared. I have a little boy who just turned three and I’m so afraid that I wont see him grow up. Sad for myself for all of the wasted time that I didn’t use to see and do things in this great big world.

I am in awe of how strong you all are. I honestly don’t feel like I can make it through the treatments. I am overwhelmed and exhausted and I have only been dealing with this for three days


I hope this is okay that I wrote this here. Just need to tell someone how I feel.


Thanks and well wishes!

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Nov 6, 2021 10:00AM ElaineTherese wrote:

Hi!

I felt the same way, seven years ago. But, here I am! Triple positive breast cancer is highly treatable. It is not a death sentence. It is, however, a marathon in terms of treatments.

My advice to you is to take it one scan and one treatment at a time. Just get through what you need to get through for the day.

Even now, I get these annoying Zoladex shots once a month. I've been getting them for six years. My oncologist says I can stop after seven years. It's getting so close, I'm almost there!

Of course, it's OK that you contributed here! Welcome! And ((Hugs))

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Nov 6, 2021 10:10AM - edited Nov 6, 2021 10:12AM by 1982M


Phelps128,

I'm so sorry you find yourself joining this group. I'm triple positive and a mom to three kids (14,8, & 4). This first part is definitely the worst. Waiting for the information is super difficult, I promise you once you know more it does get easier. The treatments feels overwhelming, but once you start it settles. You get into a rhythm of it all. You absolutely can do it! Be kind to yourself. You are allowed to be afraid and grieve, but also- invest in yourself so you can get better. It can be hard to take care of you when you have children and other responsibilities, but don’t be afraid to put yourself first while doing treatments.

Also, there is time to make decisions and choices. Ask lots of questions to your doctors, and here. I’ve felt so blessed to learn from the people who post here!

Dx 7/13/2021, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/12/2021 Lumpectomy: Left; Lymph node removal: Sentinel Dx 9/3/2021, DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/22/2021 Herceptin (trastuzumab) Chemotherapy 9/22/2021 Taxol (paclitaxel)
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Nov 6, 2021 06:21PM Phelps128 wrote:

Thank you so much for responding! I’m glad that I reached out because I am so confused with everything.

I know this is just wishful thinking or crazy thinking, but did any of you find certain foods help? I have not been able to eat since Wednesday, I’m afraid of feeding my cancer. I know irrational, but that’s how I feel. I know sugar is bad, but is sugar from fruits bad? I’m reading so many different things, but I know that I need to eat eventually.

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Nov 6, 2021 08:30PM ElaineTherese wrote:

Don't worry about sugar or eating anything else right now. At this point, nothing you can eat will shrink your cancer, nor will it feed your cancer. If you do chemo first (before surgery), the most important thing you can eat is protein and drink fluids (hydrate, hydrate, hydrate!).

Stop reading Dr. Google! There's so much junk out there. Listen to your doctors, or ask questions here.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Nov 6, 2021 10:53PM 1982M wrote:

I wish their was a magic food or activity to do or avoid, but there isn’t. Excess sugar is not good for health. Excess most anything is bad. Fruit has lots of healthy fibre, antioxidants, vitamins etc. If you want fruit, eat fruit. If you want chocolate, eat some chocolate (just don’t eat only chocolate!). I asked to speak to dietitian right when I was diagnosed and they said just eat to tolerate. I asked about protein or deficits etc. They just said eat what I can. I normally intermittently fast and asked if that’s ok. They said if I tolerate it, go ahead. There is no magic one size fits all nutritional advice (from what I gather).

The one thing my medical and radiation oncology suggested is exercise. If you can, get a bit of exercise. It can help with the anxiety, but it’s also a evidence based action you can do that has positive impacts of cancer before, during, and after. It’s not much but veryday since I’ve been diagnosed I’ve walked. I’m not hugely athletic but I bought a treadmill and walk a min of 30 min a day every single day. On days I have chemotherapy I walk 30 min before I go. It’s one thing I can do for myself, my mental and physical health.

Dx 7/13/2021, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/12/2021 Lumpectomy: Left; Lymph node removal: Sentinel Dx 9/3/2021, DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/22/2021 Herceptin (trastuzumab) Chemotherapy 9/22/2021 Taxol (paclitaxel)
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Nov 6, 2021 11:02PM Phelps128 wrote:

Thanks guys for replying. I will try to start walking. I have not left the couch since this Wednesday morning of biopsy.

I’m confused on what is better surgery before chemo or chemo then surgery. I also read that having a high % HR+ is a bad predictor of Herceptin efficacy. I’m scared that the herceptin won’t work for me because it’s 90%. I met a breast surgeon yesterday before I got my biomarker results back, so trying to figure this triple positive stuff out alone. The surgeon explain breast cancer treatment to me, but now confused on what treatment is for trip pos.


Also, did anyone send their path slides for a second opinion?


thanks so much everyone

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Nov 7, 2021 12:07AM 1946Taco wrote:

Phelps128 - almost exactly 5 years ago, I stood in your shoes although I didn't know I was TP until after my lumpectomy. Right now really is the hardest. Your treatment plan, including pre or post surgery chemo will depend on your staging. That will also influence the type of chemo you will get. So... try to breathe, as someone said, leave Mr. Google alone, and take it one step at a time. Keep asking questions both here and from your medical team. It's certainly OK to ask for a second opinion. I went to a group that was highly respected by primary who had treated me for years and didn't get one but if you are uncomfortable or don't get your questions answered, by all means, talk to a second physician. Also, try to take someone with you to your medical appointments. It's OK for you or your helper to bring or take notes.

I'm glad you found Breastcancer.org. This is a safe place for your joys and your sorrows. As you get a treatment plan, there will be other threads you might visit. We can help you find them too. As you get your diagnosis, post that on your profile and make each entry "public."

Eat what tastes good to you but try to eat and stay hydrated. And a walk is always a good idea. Don't look back! "Could have, should have, would have" won't make a difference today. As you move forward, you can consider new health habits but don't beat yourself up. Just take care yourself and your son for today.

Dx 11/22/2016, IDC: Tubular, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Radiation Therapy 12/28/2016 Balloon-catheter Targeted Therapy 2/2/2017 Herceptin (trastuzumab) Chemotherapy 2/2/2017 Taxol (paclitaxel) Hormonal Therapy 12/3/2017 Femara (letrozole) Hormonal Therapy Arimidex (anastrozole)
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Nov 7, 2021 12:36AM Phelps128 wrote:

Thank you for replying...means a lot. I am going for lymph node biopsy this week. Praying it’s clear.

I will keep everyone posted. Well wishes for health and happiness to all!!!!

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Nov 7, 2021 07:42AM YesIamaDragon wrote:

Phelps: Neoadjuvant chemo (chemo before surgery) is recommended for those of us who are triple positive and have tumors above 2 cm (some say 1 cm) .

As far as what to eat: I am a near life-long vegetarian and teetotaler, and have always exercised and meditated. My favorite foods are all on the "foods to eat to prevent cancer" list. And I still got breast cancer. During chemo pretty much all I could eat during the worst of it was Coconut Bliss fudgecicles. Eat what you can to get through this. Cancer cells are metabolically very active (why they light up on PET scans), so they need a lot of fuel, but starving yourself won't fight them -- they will grab what they can at the expense of your healthy cells. So yes, added sugars in excess aren't healthy, but they don't "feed" cancer particularly.

Exercise helps in so many ways. Again, during the worst of my chemo (I had more side effects than most, was sure I would be one of the ones who was able to never miss a day of work but I am a lightweight when it comes to ANY medication, so I should have known better) my watch would remind me to get up every hour and I did laps around the kitchen. But I also made myself go for walks in the woods daily. And I joined a cancer-survivor rowing group after chemo, and did what I could, then started strength training with a lymphedema-prevention weight training group. Do push yourself a little bit to walk every day, but don't beat yourself up when you need rest.

Do you mind saying where you live? There are groups on here for many parts of the world, and it may help you to connect with others local to you. The Nurse Navigator or Social Worker at your cancer center may also be able to connect you with others who are triple positive and further along than you are.

Take one day at a time, as difficult as it is. You can manage even the worst days if you just focus on getting through one day. And the unknowing at the beginning is the hardest!

Dx 6/2019, IDC, Right, 2cm, Grade 2, ER+/PR+, HER2+ Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Surgery Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy Hormonal Therapy Arimidex (anastrozole)
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Nov 7, 2021 09:26AM 1982M wrote:

Phelps I had my surgery before chemotherapy since my original tumour was thought to be 1.5 cm. Both my surgeon and her intern decided that was the right choice. There are definitely pluses and minuses both ways, but it will be your estimated tumour that guides those recommendations. They found DCIS in my margins so now I’ll get survey after chemo as well. Due to Covid delays they decided to put me into chemo before re-excising.

Don’t be discouraged with the ‘cross talk’ between Her2 & ER+++. Many triple positive cancers respond well. I’m very Er, Pr + as well (91-100%). After I finish chemo I’ll go onto tamoxifen alongside the Herceptin to help target any stray cells all at once. That can help with cross talk.

Good luck on your node biopsy. No matter what the result, they have so SO many treatments for Her2+ and triple positive cancers.

Dx 7/13/2021, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/12/2021 Lumpectomy: Left; Lymph node removal: Sentinel Dx 9/3/2021, DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/22/2021 Herceptin (trastuzumab) Chemotherapy 9/22/2021 Taxol (paclitaxel)
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Nov 7, 2021 12:42PM - edited Nov 7, 2021 12:49PM by Phelps128

Thank you! I had my son 3 years ago on Oct 29th and had complications from the c-section. I had hip issues from early on and it took me over two years to get over it with physical therapy. Life is so ironic. I was just starting feel really good again.

Thank you for all of this information. It is very helpful. I live in Allentown, PA. I believe that I will be treated at Weill Cornell in NYC. Is there a forum that discusses experiences and reviews of treatment at hospitals? It's hard for me to find many reviews on line.


ElaineThere- sorry for the late reply, but so happy that you are almost at your 7 years! I hope it goes fast and you are done with the zoladex!!

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Nov 7, 2021 01:52PM morrigan_2575 wrote:

Dr Google is the worst for newly diagnosed, it will drive you insane with worry. Take a deep breath and step away from the search 😁😁😁😁

Best of luck!

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/5/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/5/2020 Herceptin (trastuzumab) Targeted Therapy 2/5/2020 Perjeta (pertuzumab) Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Surgery 6/19/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/6/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/10/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 7, 2021 02:03PM SpecialK wrote:

phelps - Weill Cornell has a good reputation and is an NCI center - I would think you are in good hands. I used the search function on the left of the screen and typed in Weill Cornell nyc and got this page of hits from within this site, including your post from above. There are some specific docs and procedures mentioned. If the members who made those posts are still active you can always send them a private message and ask specifics.

https://community.breastcancer.org/posts/search?utf8=%E2%9C%93&search_builder%5Bkeyword%5D=weill+cornell+nyc&search_builder%5Bauthor%5D=&search_builder%5Bsource%5D=&search_builder%5Bdate_range%5D=&commit=Search

On the subject of Her2+ and ER+ all of us on this thread are in this boat - my ER+ percentage was 96, I was already post-menopausal so went immediately to an aromatase inhibitor, initially letrozole, then arimidex, then back to letrozole - switching to stay on top of shifting side effects. I stayed on these meds for 7.5 years and am now at 11 years post diagnosis. There is a short game and long game in being a triple positive - the initial recurrence threat seems more driven by the Her2+ aspect, longer term recurrence threat coming from the ER+ part. The good news is that the meds currently in use have demonstrated effectiveness for most early stage patients.

Chemotherapy before or after surgery is generally determined by clinical impressions of stage. The tumor size cutoff is usually 2cm and this was driven by the advent of Perjeta in 2013, although positive nodes with a smaller tumor, or other high risk factors meant possible neoadjuvent use as well. Perjeta was initially only used neoadjuvently, in the presence of a taxane, and only for tumors over 2cm. Prior to 2013 most of us had surgery, then chemo and targeted therapy, but now warranted neoadjuvent use is standard of care.

Wishing you the best - this thread is full of info and helpful folks. Hang in there, this early part is tough sledding, but you will get through it.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Nov 8, 2021 12:58AM Phelps128 wrote:

Thank you all so much for replying. It means a lot to me! All the info is very helpful

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