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Topic: 2nd Cancer after 10 years ~ HER2 positive ~ TCHP 6 cycles

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Apr 21, 2020 07:49PM

Debra1111 wrote:

Hello Everyone,


I am new to the forums. I have lived on them the past week trying to wrap my head around my diagnosis and treatment plan. Reading so many threads and stories of individuals going through this along side with me has brought so much comfort and knowledge. Thank You All !!

I am 10 years out of initial diagnosis. Only had to do lumpectomy and radiation and five years on Arimidex the first time. Fast forward exactly ten years. I had a mammogram on 2/14/2020 that was clean !! Two weeks later I find a small pea size lump in my same breast that was involved before. Was able to see a surgeon in the midst of all this Coronovirus Pandemic and with the help of Radiology Services had three separate biopsies, MRI, and Pet Scan to determine that it is a different cancer this time and it had not spread so I know that I can beat this thing !! This Invasive Lobular my Oncologist said is often missed on Mammograms ?? There is so much to get to the other side this time. I had my first round of TCHP on 4/15. Handled the Chemo fine and very little side effects except mouth issues. I hate the thought of losing my hair but then that seems to be how we all feel. The hair is the least of our issues, right ? Does each treatment get harder ? I know its cumulative so I'm guessing it might. After treatment ends I think my best option is to have a double mastectomy. How long do i need to wait after I finish treatment ? Its so overwhelming.

I just turned 60 but feel I am a young 60. I hope to get back to my physical self after this is all done. I am married 35 years to a great husband and have three children. Both of my daughters are nurses so they help me so much with understanding this new treatment plan I am on. Not sure where to post this. Also following APR 2020 new start to Chemo. I feel HER2 positive is a beast that has been unleashed on me. So glad I am in treatment only 3 weeks after diagnosis. I knew this time was different and it was taking over my body. Walking still and drinking a gallon of water a day. Any advice is appreciated.

Dx 4/2010, IDC, Left, 2cm, Stage IIA, Grade 1, ER+/PR-, HER2- Dx 4/2020, ILC, Left, <1cm, Stage IIA, Grade 1, ER-/PR-, HER2+ (IHC) Radiation Therapy Whole-breast Immunotherapy Surgery Lumpectomy: Left Hormonal Therapy Arimidex (anastrozole) Surgery Mastectomy: Left, Right Radiation Therapy Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Apr 21, 2020 08:22PM Beesy_The_Other_One wrote:

Debra, I am so sorry you find yourself in this spot again--truly. You and I are part of a very small group here, being ER-/PR-/HER2+. We are a clear minority! Being HER2+ seems overwhelming at first because the tumors can be quite aggressive, but thanks to Dr. Dennis Slamon, we have a great prognosis and many treatment options!

I did not try to cold cap to save my hair because my tumor was growing like a monster at diagnosis and just needed to get on with it, but if it's something you feel like you have the energy to do, there are threads about cold capping that are quite inspiring. I did ice my hands and feet to avoid neuropathy, and it was worth it to me, as I had none (I can send you more info on this if you're interested). My doctor told me that the effects of TCHP would be cumulative, but that was not the case for me--it was as if my body finally said, "Okay, you're going to poison me--I'm just going to deal with it." What no one warned me about though, and maybe I can warn you: they often give what's called a "loading dose" the first time and it's just like what it sounds like: they blast you with chemo. I was knocked on my you-know-what and both my husband and I thought that if this is going to get worse, would I be standing? Turns out I did better and better with each chemo. I was 56 at diagnosis, and like you, felt vibrant and energetic, but after that first dose, I wasn't sure how this was going to look in three months! I was treated at a major cancer center and they prepared me well and while there were parts that were hard, my post-surgical pathology report showed not one live cancer cell anywhere. High grade cancers like ours do respond well to chemo. I chose a bilateral mastectomy, but this was my second "run-in"---I had a one-off very rare tumor in 1996/1997 and lost half of the right breast then. I knew that both would go this time--I was over it.

I found that reading the Triple Positive thread very helpful, because they discussed issues dealing with being HER2+ since at any one time there aren't enough ER-/PR-/HER2+ ladies to really make up a group. I am sure I have not answered everything you were asking, but try me again--I'm happy to help. You can do this! I really want you to hear hope in my voice! ~ Beesy

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Apr 21, 2020 09:01PM - edited Apr 22, 2020 02:22AM by Debra1111

Thank You So Much Beesy !! I do hear hope in your voice and I am happy you made it to the other side. This website has been such a comfort. Thanks for reaching out. Not sure how you can share with me your thoughts on icing for neuropathy. I have been looking into that for next time on 5/6. No cold capping here. Just going with it.

Dx 4/2010, IDC, Left, 2cm, Stage IIA, Grade 1, ER+/PR-, HER2- Dx 4/2020, ILC, Left, <1cm, Stage IIA, Grade 1, ER-/PR-, HER2+ (IHC) Radiation Therapy Whole-breast Immunotherapy Surgery Lumpectomy: Left Hormonal Therapy Arimidex (anastrozole) Surgery Mastectomy: Left, Right Radiation Therapy Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Apr 21, 2020 09:49PM ShetlandPony wrote:

Hi, Debra. Have you had a pathology review to double-check everything? ILC is usually ER+ PR+ and Her2 negative. Did they check Her2 with FISH or CISH as well as IHC? Does the pathology report say e-cadherin negative (the hallmark of lobular)?

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Apr 21, 2020 11:25PM Beesy_The_Other_One wrote:

Debra, I was in too much of a rush and didn't read carefully that you'd already started chemo--so my comment about saving hair was unhelpful and insensitive. I apologize.

I'll send you more information on the icing of hands and feet tomorrow. My only other comment is that I would put a lot of weight on ShetlandPony's words--she is wise in these matters, but particularly with ILC.

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Apr 21, 2020 11:39PM MinusTwo wrote:

Debra - My recurrence was ER/PR negative & HER2+. There are a number of forums that I used to frequent, but I was IDC instead of lobular. Still, I'll see what I can dig out tomorrow. Hang in there girl. We're with you.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 22, 2020 08:58AM Debra1111 wrote:

Good Morning Shetland Pony ..... Thank You for your interest. "E-cadherin immunostain is performed on selected slide and is negative supporting the diagnosis. The controls worked appropriately". " ER IHC 0 Negative PR IHC 0 Negative HER2 IHC +3 Positive." Knowing the feel of the nodule I am confident of the Lobular diagnosis and the HER2+ gene is definitely a feeling of knowing something was going wacky in my body. It was in 1 lymph node that they clipped during biopsy so it can be removed during mastectomy. 10 years ago my IDC was estrogen positive and I was on Arimidex for 5 years and had both ovaries removed. Kind of makes sense to me that it would show negative for estrogen. My oncologist is happy to see the HER2+ receptor so the THCP course of treatment makes me have hope. Is it that uncommon for my receptors that you have seen from this page ? I have appointment this morning with Oncologist. I will inquire further myself too.

Thank You Minus too and Beesy The Other One. Anything you can share would be appreciated. I was out walking at 7:00 a.m. this morning trying to grasp this road that I have been placed on. Connecting with others feels good.

Dx 4/2010, IDC, Left, 2cm, Stage IIA, Grade 1, ER+/PR-, HER2- Dx 4/2020, ILC, Left, <1cm, Stage IIA, Grade 1, ER-/PR-, HER2+ (IHC) Radiation Therapy Whole-breast Immunotherapy Surgery Lumpectomy: Left Hormonal Therapy Arimidex (anastrozole) Surgery Mastectomy: Left, Right Radiation Therapy Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Apr 22, 2020 10:38AM Beesy_The_Other_One wrote:

Debra, here is a link to a thread which discusses icing to protect hands, feet and nails during chemo: Icing to prevent neuropathy

It will give you a good idea of what different women have done.

I used these cool packs. I ordered four, one for each hand and foot. I have no neuropathy and also had no issues with my nails, hands or feet during chemo. The first fifteen minutes I would wonder why I was icing, but after that my hands would get so numb I didn't care as much. I also sucked on ice chips during the T and C portions of the treatment to avoid mouth sores, which I also did not have but I can't say it was because of the ice chips.


1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Apr 22, 2020 10:44AM MinusTwo wrote:

I used frozen peas in zip lock bags - 30 minutes before the Taxotere, all during the infusion & 30 minutes after. The nurses kept my extra set in their freezer and I changed them out 1/2 way through. I never lost any finger or toe nails, so that worked. I did get neuropathy, but who knows if it would have been worse w/o the icing.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 22, 2020 11:03AM MinusTwo wrote:

Debra - below are a couple of helpful threads

TIPS FOR GETTING THROUGH CHEMO

https://community.breastcancer.org/forum/69/topics/706846?page=1

ER/PR- HER2+ Roll Call

https://community.breastcancer.org/forum/80/topics/767013?page=1

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 22, 2020 11:05AM MinusTwo wrote:

And Here's one more

https://community.breastcancer.org/forum/80/topics...

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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May 4, 2020 04:49PM KBeee wrote:

I'm sorry you're dealing with this again. I joined the chemo group for my starting moth (both times) and am still in touch with many of those gals who got me through those crazy times. Everyone is different, but I had similar side effects each time (I kept a detailed journal) and for me, just the fatigue was cumulative. I tolerated chemo well, all things considered.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)

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