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Topic: TRIPLE POSITIVE GROUP

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 31, 2011 06:30AM - edited Dec 10, 2012 07:55AM 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 8, 2021 08:51PM ang7894 wrote:

i have a question for anyone. I had treatment along time ago to my left breast lumpectomy and chemo and whole breast radiation 2 lympnodes taken out but didn't spread. Now on to now just in the last few days on this same breast it is red swollen looks very much like IBC i have put ice on it for two days now plus ibuprophen. with no good results so far. it all started when i was holding a heavy baby and pressure hurt me for a few days now and has turned red .and looks just like the images i see online and now I'm scared. if i have IBC same breast as past can i just get a mastectomy and radiation but no chemo. anyone know ? or can i still get another lumpectomy in this same breast ? and just do radiation. im so scared i wont have the streanghth to do it all over again. Im just so devitstated right now

All chemo done!! last one was April 30th 2012 radiation Done!! Last one was June 22nd 2012 tamox started on Sept 29th 2012 for 5 years!!! Herceptin until March 12th 2013 All Done!!! ER+ 68% PR+ 96% HER2NEU + 3 Angie Dx 12/1/2011, IDC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 1/22/2012 AC + T (Taxol) Targeted Therapy 3/18/2012 Herceptin (trastuzumab) Radiation Therapy 5/7/2012 Breast, Lymph nodes Hormonal Therapy 9/28/2012
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Nov 11, 2021 01:29PM gamzu710 wrote:

My ANC bounced back this week to 3.0, very close to what it was 2 weeks ago before it took a dive. No idea. what the deal is but happy.

Yet another Taxol rash, though, this one all over my chest and abdomen within 10 minutes of the infusion starting. I already posted about in the Weekly Taxol thread but it dragged things out as they had to stop the infusion and watch me for 30 minutes, then restart at a slower rate and titrate back up. They were thinking about more steroids but it eventually faded on its own before they had to. The rash didn't reappear the second time even at full flow so we have no idea what's going on. It's clearly some kind of skin reaction to the Taxol but seems to be transient and not a real allergic reaction.

Hopefully next week will be better. Being the one the nurse is constantly watching and coming over to check my face and under my shirt every 4-5 minutes isn't very fun.

Surgery 7/29/2021 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 10/21/2021 Taxol (paclitaxel) Targeted Therapy 10/21/2021 Herceptin (trastuzumab)
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Nov 11, 2021 01:45PM Nsbrown54 wrote:

ang7894 - I hope you’re able to see your breast doctor to see what’s going on with your breast. Take care.

Dx 6/16/2020, IDC, Right, 6cm+, Stage IIB, ER+/PR+, HER2+ Chemotherapy 6/28/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/18/2020 Mastectomy Targeted Therapy 1/4/2021 Herceptin (trastuzumab) Targeted Therapy 1/25/2021 Perjeta (pertuzumab) Hormonal Therapy 6/2/2021 Arimidex (anastrozole)
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Nov 11, 2021 03:58PM Tess111 wrote:

Hi ang7894. I too, hope your issue has resolved. A few months after my initial surgery, I developed a rash on my affected breast. At first, we were just watching it. Then I was sent to the original surgeon, who basically said, "Don't worry. Be happy." Yeah - no that didn't cut it for me. The breast area got redder and more painful. I suspected, like you, IBC. So I went to a Breast Surgeon specialist office, and they at least did an ultra sound and an punch biopsy. It came back fine. But that didn't help my problem and I ended up with the peau d'orange that is often found in IBC. To make the long story short, it took 10 months to have my issue definitively diagnosed and to start treatment. It turned out to be breast lymphedema and I saw two "experts" and it was the second person who diagnosed it and found the right treatment for me. I had to drive a ways to find a therapist who knew what they were doing and was in my insurance network, but oh, the difference!

So, if your issue hasn't resolved. First, you need to rule out IBC. Then, you might want to consider lymphedema as a possible source of your issue. Breast lymphedema is not that common, but I would say it is not uncommon. That is why you need someone who knows something about breast lymphedema to tell you if that is your issue. It took awhile to find out what worked for my lymphedema, but now it is not really an issue. Although, when it is humid, or very cold, or I eat too much salt, the problem can rear its ugly head. Also, I don't carry heavy bags with just my left arm, because that can cause a flare up, too.

Good luck, ange. Let us know how you are doing.

Dx 7/5/2016, IDC, Left, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/20/2016 Lumpectomy: Left Targeted Therapy 9/12/2016 Herceptin (trastuzumab) Chemotherapy 9/12/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 9/13/2016 Perjeta (pertuzumab) Radiation Therapy 12/12/2016 Whole-breast: Breast Hormonal Therapy Femara (letrozole)
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Nov 18, 2021 11:57AM 1982M wrote:

I posted in the weekly taxol group too but I brought up Neratnib today with my MO and he sounded pretty excited. I’m in Canada and I asked if it was covered and he said yes. I particularly interested in maybe adding Nerlynx/Neratnib might address that cross talk between HR/Her2 based on what I was hearing. I’m only a T1b. I asked about what he thought my overall risk of distal metastasis was and he said he thought, based on all my information and that I complete all recommended treatment that I have about a 90% overall long term survival related to breast cancer. Id sure like to address that 10%!

He is happy I'm reading and informed. He said it may be an over treatment but that my case is a bit complicated with my age, my DCIS etc. I also have a variant of unknown significance on PALB2 and significant history of breast cancer and cancer in general in my family and since I'm hoping to keep some breast tissue I feel better with over treatment going with a bilateral reduction and radiation vs mastectomy. We're going to discuss it closer to the end of Herceptin.

He said it will go chemo, surgery, tamoxifen then radiation for me- all the while I get Herceptin. Then maybe neratnib/Nerlynx.

Just thought I’d post for others considering. I’m curious on experience. I’ve been reading the 2019 post on it too.

Dx 7/13/2021, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/11/2021 Lumpectomy: Left; Lymph node removal: Sentinel Dx 9/3/2021, DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/21/2021 Herceptin (trastuzumab) Chemotherapy 9/22/2021 Taxol (paclitaxel)
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Nov 18, 2021 01:47PM gamzu710 wrote:

Very interesting stuff, 1982M, thanks. I see my MO in 2 weeks, maybe I will discuss Nerlynx with her too. I also want to have a discussion about what I've read about the effectiveness ovarian suppression plus AIs vs. just tamoxifen, though it might be a bit early for that. And Herceptin infusions vs. injections after chemo is done. Theoretically the injections sound more convenient but the long-term study data of comparable efficacy just isn't there yet. I only saw over 6 years. 6 years is nothing in the world of breast cancer where recurrences can happen 15-20 years out.

It does look like Nerlynx causes a lot of GI side effects, which gives me a little pause. Did your MO talk at all about that?

Surgery 7/29/2021 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 10/21/2021 Taxol (paclitaxel) Targeted Therapy 10/21/2021 Herceptin (trastuzumab)
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Nov 18, 2021 04:17PM - edited Nov 18, 2021 04:22PM by 1982M

We didn't talk to much about side effects but they have a protocol now with slowly increasing the dose along with anti diarrhea medication that apparently works well.

https://www.sciencedirect.com/science/article/pii/S0923753420398331

I figure I can try and quit if it's unliveable. There's a thread on here from May 2019 I think with lots of people discussing it. Might be worth a bit of a read?

Dx 7/13/2021, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/11/2021 Lumpectomy: Left; Lymph node removal: Sentinel Dx 9/3/2021, DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/21/2021 Herceptin (trastuzumab) Chemotherapy 9/22/2021 Taxol (paclitaxel)
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Nov 18, 2021 09:11PM - edited Nov 18, 2021 09:15PM by gamzu710

Thanks, 1982M. Giving that thread a read and bookmarking your article and a few others to show my oncologist. It sounds like something that's worth trying. The potential for GI upset is always a concern for me because of my weight issues (though I've been maintaining nicely on Taxol so far and have even managed to gain a couple pounds) but you're right, there's no harm in giving it a go. It's not like you can't stop. Hopefully the insurance companies agree? Mine has been great so far but that's always an unknown.

Surgery 7/29/2021 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 10/21/2021 Taxol (paclitaxel) Targeted Therapy 10/21/2021 Herceptin (trastuzumab)
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Nov 24, 2021 08:22PM ang7894 wrote:

Hi , All a little update :: turned out i have an infection they did a mammo and an ultra sound and i was good ! so a few weeks of antibiotics they are saying, thank you to all that responded to my post. for all of you may you have healing and future good vibs coming your way !!

All chemo done!! last one was April 30th 2012 radiation Done!! Last one was June 22nd 2012 tamox started on Sept 29th 2012 for 5 years!!! Herceptin until March 12th 2013 All Done!!! ER+ 68% PR+ 96% HER2NEU + 3 Angie Dx 12/1/2011, IDC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 1/22/2012 AC + T (Taxol) Targeted Therapy 3/18/2012 Herceptin (trastuzumab) Radiation Therapy 5/7/2012 Breast, Lymph nodes Hormonal Therapy 9/28/2012
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Nov 24, 2021 09:02PM 1982M wrote:

ang7894, so glad to hear it turned out to be infection (the lesser of evils).

Hope you heal well!

Dx 7/13/2021, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/11/2021 Lumpectomy: Left; Lymph node removal: Sentinel Dx 9/3/2021, DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/21/2021 Herceptin (trastuzumab) Chemotherapy 9/22/2021 Taxol (paclitaxel)
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Nov 26, 2021 09:29PM ang7894 wrote:

Thank you so much happy Holidays !!

All chemo done!! last one was April 30th 2012 radiation Done!! Last one was June 22nd 2012 tamox started on Sept 29th 2012 for 5 years!!! Herceptin until March 12th 2013 All Done!!! ER+ 68% PR+ 96% HER2NEU + 3 Angie Dx 12/1/2011, IDC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 1/22/2012 AC + T (Taxol) Targeted Therapy 3/18/2012 Herceptin (trastuzumab) Radiation Therapy 5/7/2012 Breast, Lymph nodes Hormonal Therapy 9/28/2012
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Nov 29, 2021 11:25AM Phelps128 wrote:

So glad to hear! I hope it clears up fast

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Nov 29, 2021 11:27AM Phelps128 wrote:

Hello All,

I had my first tchp cycle on 11/17. It wasn’t fun that’s for sure. I have not heard a peep at all from my team since my cycle. I did have a PET scan on 11/23 and still not a peep. Is this normal or do you have more contact with your team?


Thank you so much!

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Nov 29, 2021 12:20PM Nsbrown54 wrote:

Phelps128 - I saw my oncologist or oncologist NP every visit (every 3 weeks)so they went over any test results during the visit. When do you see your oncologist next?

Dx 6/16/2020, IDC, Right, 6cm+, Stage IIB, ER+/PR+, HER2+ Chemotherapy 6/28/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/18/2020 Mastectomy Targeted Therapy 1/4/2021 Herceptin (trastuzumab) Targeted Therapy 1/25/2021 Perjeta (pertuzumab) Hormonal Therapy 6/2/2021 Arimidex (anastrozole)
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Nov 29, 2021 12:43PM Phelps128 wrote:

oh okay! I thought that they might call with my PET scan results, since the scan was done to determine if the cancer spread outside lymph nodes. My next apt will be for Cycle 2, I believe on Dec. 8th.

I just feel a little lost I guess.

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Nov 29, 2021 02:08PM Nsbrown54 wrote:

Phelps128 - call them for test results rather than waiting. They may discuss with you ahead of time.

Dx 6/16/2020, IDC, Right, 6cm+, Stage IIB, ER+/PR+, HER2+ Chemotherapy 6/28/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/18/2020 Mastectomy Targeted Therapy 1/4/2021 Herceptin (trastuzumab) Targeted Therapy 1/25/2021 Perjeta (pertuzumab) Hormonal Therapy 6/2/2021 Arimidex (anastrozole)
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Nov 29, 2021 02:51PM morrigan_2575 wrote:

I saw my team weekly. I went in for blood work every week and would usually do a teleconference on the non treatment weeks.


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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23 hours ago fluffqueen01 wrote:

Hi everyone! Checking in to see how we are all doing.

I am offering up either some information for you all to watch out for, or to say please say prayers. Not sure which.

My plastic surgeon orders an MRI (no dye) every two years to check the implants. I had the MRI on the 19th. Implants are fine. However, they called out the following.

There is cortical thickening of a right axillary lymph node measuring up to 0.7 cm in thickness. Right level 1, 2, and 3 lymph nodes are increased when compared to the prior examination. For example there is a right level 3 lymph node measuring 1.1 cm.

Small left axillary lymph nodes are noted without pathologic enlargement or suspicious cortical thickening.

IMPRESSION:
1. Intact bilateral subpectoral silicone implants.
2. Prominent right axillary lymph nodes, possibly accentuated by MR technique, for which dedicated right axillary ultrasound is recommended with correlation with recent vaccination.
3. Enlarged right level 3 axillary lymph node for which correlation with the recent vaccination is recommended. If the patient has had a recent right code with vaccination, a short-term follow-up examination with a chest CT in 3 months is recommended. If the patient has not had a recent Covid with vaccination, a PET/CT is recommended.


I had my Covid Booster on October 28. Apparently it is is a thing that is messing up breast imaging and causing unnecessary testing.

So my Onc. called immediately said she believes it is vaccine related, but I am having an ultrasound on the 16th to see if things have improved. PS said the same. Breast surgeon called to say don't freak out.


So either I should have waited on the MRI, or I am going to be losing a lot of valuable time if this is something else that is really bad.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/13/2011 Herceptin (trastuzumab)
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22 hours ago Phelps128 wrote:

thanks everyone for the replies!


morrigan_25: where did you go for treatment? I notice that you are in NJ. I’m in PA. Thanks!!


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21 hours ago JamG wrote:

Hi, Phelps128, this was me in March. I'm still in it with you, just several months ahead of you. You are strong, too, even if you don't feel like it right now. I've realized that I can feel fragile and strong at the same time. Strength comes in allowing yourself to feel what you feel and continuing to put one foot in front of the other. Reach out if you need support. I'm not on here too often, because I often find that I get overwhelmed (even though people are incredibly supportive!!!)--it's just that I end up going down the rabbit hole and making myself more worried than I need to be (that's why I haven't been on social media in years). But I think I'll get an email if you reach out to me directly.

So, I did TCHP for 6 infusions, then a lumpectomy, then 6 weeks of radiation, and now I'm on Kadcyla (I've had 4 or 5 infusions--I've lost track of the number!), and just got my first Lupron shot. I start an AI in 3 weeks or so. (I'm not quite in menopause yet but going on Tamoxifen would interact with my psych meds, and I really don't want to change them!) TCHP was hell for me, but I'm SO glad that I got it done with first. It definitely got rid of all the cancer in my tumor completely and got rid of the cancer in 5 out of 6 lymph nodes. The surgery and radiation were fine--just a bit of discomfort. Kadcyla is now starting to bother me (well, we're trying to figure out if my GI symptoms are because of it--seeing a gastroenterologist tomorrow and then I'll decide with my team on Friday if I should continue on Kadcyla or just got to Herceptin (with Perjeta? Not sure yet of the protocol). Last week was the first time that my WBC were too low for my oncologist to give me the Kadcyla infusion. My sudden onset of GI issues like the ones I had on TCHP have caused me to lose 12 lbs in 3 weeks. Something is definitely going on with me, and I'm hoping to get some relief soon. As I write all of this, I can't even believe how much I've been through since March! As you know more about what your treatment process will be, feel free to share it here.

I'll be thinking of you as you make your way through whatever ends up being your process.

Dx 3/3/2021, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 3/16/2021 Herceptin (trastuzumab) Targeted Therapy 3/16/2021 Perjeta (pertuzumab) Chemotherapy 3/16/2021 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/26/2021 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Dx 7/27/2021, IDC, Left, 1cm, Stage IIA, Grade 2, 1/6 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 8/10/2021 Kadcyla (T-DM1, ado-trastuzumab)
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21 hours ago JamG wrote:

Has anyone had GI issues while on Kadcyla?? I'm only on the 4th or 5th infusion, and a month ago I started getting the same symptoms that I had on TCHP (nausea, cramps, constipation, no appetite, etc.). I lost 12 lbs in 3 weeks, and this last week was the first time my WBC was too low to get the Kadcyla infusion. I'm meeting with an gastroenterologist tomorrow, hoping he can figure out if this is related to the Kadcyla vs. being something else. And if he can't figure out why I'm having these issues, I'm hoping he can help reduce the symptoms. My onc is leaning toward taking me off the Kadcyla and just having me on the Herceptin (and maybe Perjeta??). Would love to hear if anyone has had issues with the Kadcyla and what you did! Thanks!!

Dx 3/3/2021, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 3/16/2021 Herceptin (trastuzumab) Targeted Therapy 3/16/2021 Perjeta (pertuzumab) Chemotherapy 3/16/2021 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/26/2021 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Dx 7/27/2021, IDC, Left, 1cm, Stage IIA, Grade 2, 1/6 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 8/10/2021 Kadcyla (T-DM1, ado-trastuzumab)
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8 hours ago - edited 8 hours ago by 1982M

Sorry to hear fluffqueen01. It sounds like your team is on it and hopefully related to your vaccine booster! Please keep us updated.

I don't have answers for you Jam, but again- sorry you had such a poor reaction. 12lbs is a lot.

Phelps- Hope your PET scan turns out well! I only speak to my team every round - so every 3 taxol doses. I have online access to most test though so I can see what they say. Im glad you will call for results.

Dx 7/13/2021, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/11/2021 Lumpectomy: Left; Lymph node removal: Sentinel Dx 9/3/2021, DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/21/2021 Herceptin (trastuzumab) Chemotherapy 9/22/2021 Taxol (paclitaxel)
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6 hours ago - edited 6 hours ago by morrigan_2575

"had my Covid Booster on October 28. Apparently it is is a thing that is messing up breast imaging and causing unnecessary testing."

@Fluffqueen - It's a known issue. In fact places in NJ are now documenting when you get any vaccine (COVID, Flu, Shingles, etc) and which arm. Since COVID Vaccine is setting off imagining machines and looking like cancer.

I hope this turns out to be the Vaccine. My understanding is it can set off imagining machines for 4-6 weeks. However x it's best to get the extra tests in to be safe.


@Phelps - I did my treatment at a place close to me, Oncology and Hematology in Mountain Lakes. I got the same treatment plan from them, Morristown Memorial and SMG but, I liked the smaller center. I did end up going down to RWJ/Rutgers (NCI) for my Vaccine Trial, so I ended up having to deal with a hospital anyway 😂

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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