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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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Sep 29, 2019 06:43PM - edited Sep 29, 2019 06:46PM by LilyCh

SpecialK: when you mentioned "elevated alkaline phosphatase", how large is it to be considered as "elevated"? My wife's was 83 on July 5 when she finished the last HP infusion but on Friday when she had follow-up with the MO, the alkaline phosphatase changed to 91. It is increasing (although it seems to be in the range 45-117). We just got the result and had no chance yet to ask the MO, but would it be something to be concerned about?

Thank you very much!

Dx 6/5/2018, IDC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 7/12/2018 Perjeta (pertuzumab) Targeted Therapy 7/12/2018 Herceptin (trastuzumab) Chemotherapy 7/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/21/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/14/2019 Whole-breast: Breast Hormonal Therapy 3/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 30, 2019 12:39AM 1207262 wrote:

Thank you again for your thorough response, SpecialK! Curious, you mentioned you had the opportunity for a MammaPrint. Correct me if I’m wrong, but that’s similar to an OncoType Test? I thought those types of tests only worked on Hormone Positive, HER2 *NEGATIVE* tumors?

I’m also confused, I digress, about how a tumor’s Grade can change after chemo or any neoadjuvant treatment.

Additionally, I know pcr is harder with HR positivity, but does anyone know the benefits a hypothetical pCR gives a triple positive patient?

Thank you!!!

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Sep 30, 2019 12:50AM Jumpship wrote:

Thanks Coach Vicky!

Tres-I’m feeling your scaniety. My last MRI there wasn’t enough time for meds and I literally screamed for the first 15 minutes. Then i calmed down but when i got out I asked the tech why he didn’t let me out. He was a newly treated cancer patient and in great understanding and patience he said ‘You needed to complete the scan. I knew if you had to spend the night in the hospital, take meds and redo it in the morning it would cause you greater anxiety.’ For me he was correct. I was screaming things like ‘I don’t think I can do this!’ He was listening! I received news that cancer was not seen in the brain. TMI I’m sure! But I get it Tres. Sending good thoughts your way

Negative for 16 of 17 gene markers. Positive for NBN-marker of unknown significance. Dx 7/2/2014, IDC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ (FISH) Surgery 9/29/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 11/20/2014 Herceptin (trastuzumab) Chemotherapy 11/20/2014 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Sep 30, 2019 09:27AM SpecialK wrote:

lilych - fluctuations within the range are totally normal, particularly when receiving treatment. When I say mine were elevated, at the highest it has been 50 points above the high end of the range. Trending with labs is important to watch though and if your wife’s numbers continue to rise it is something to discuss with your MO.

1207262 - OncotypeDX is indeed limited to patients who are ER+ and Her2-, but Mammaprint is a different test without those limits. Since the purpose of genomic testing is to determine the usefulness of chemo it is not usually done for Her2+ or for ER- because chemo is usually a certainty. Here is some additional info:


BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Sep 30, 2019 11:05AM 1207262 wrote:

That's super interesting and good to know about MammaPrint vs OncoType. We're blessed to have good health insurance, so I will bring that up to see if there is a chance that we're covered for that. Thank you!

Additionally, I found this data interesting. I don't know if anyone's ever seen it before, but it's some SEER data. I've seen other statistics classify Luminal B as ER+/PR- or triple positive or high Ki. In this particular data, it looks like they've grouped it into specifically triple positives as Luminal B.

https://seer.cancer.gov/statfacts/html/breast-subtypes.html

I found this table very interesting as well. Statistically (whereas of course every individual is different) from 2010-2015 data, the rates based on stage are almost the same for HR+/HER2- patients as triple positives.

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Sep 30, 2019 11:56AM - edited Sep 30, 2019 11:58AM by LilyCh

SpecialK, thank you. The doctor confirmed it is not a concern, either, especially my wife is having fungal treatment.

I did go back and check the numbers during the chemo last year and it happened once the number was also 50 points higher than the high end of the range.

Dx 6/5/2018, IDC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 7/12/2018 Perjeta (pertuzumab) Targeted Therapy 7/12/2018 Herceptin (trastuzumab) Chemotherapy 7/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/21/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/14/2019 Whole-breast: Breast Hormonal Therapy 3/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 30, 2019 01:02PM - edited Oct 1, 2019 09:48AM by SpecialK

1207262 - One thing to keep in mind is that the term subtype can mean different things. There can be subtypes of hormonal and Her2 status within the disease of breast cancer, which is a classification like triple positive or triple negative, and there are further molecular subtypes within each kind arrangement of receptors that is the genetic expression independent of receptor status. Triple positives can be Luminal A, Luminal B, or ERBB (Her2+). I don't believe SEER data is captured by molecular subtype, rather in the table above they are showing hormonal receptor and Her2 status stats. I don't believe SEER data would include molecular subtyping because it is not routinely done for all diagnosed patients. The reason triple positives now have survival that is relatively the same as ER+/PR+/Her2- patients is because of Herceptin. Those stats would not likely include as many patients who received Perjeta as it was approved for early stage patients in late 2013.

Here is some info from BCO on molecular subtyping:

"There are five main intrinsic or molecular subtypes of breast cancer that are based on the genes a cancer expresses:

  • Luminal A breast cancer is hormone-receptor positive (estrogen-receptor and/or progesterone-receptor positive), HER2 negative, and has low levels of the protein Ki-67, which helps control how fast cancer cells grow. Luminal A cancers are low-grade, tend to grow slowly and have the best prognosis.
  • Luminal B breast cancer is hormone-receptor positive (estrogen-receptor and/or progesterone-receptor positive), and either HER2 positive or HER2 negative with high levels of Ki-67. Luminal B cancers generally grow slightly faster than luminal A cancers and their prognosis is slightly worse.
  • Triple-negative/basal-like breast cancer is hormone-receptor negative (estrogen-receptor and progesterone-receptor negative) and HER2 negative. This type of cancer is more common in women with BRCA1 gene mutations. Researchers aren't sure why, but this type of cancer also is more common among younger and African-American women.
  • HER2-enriched breast cancer is hormone-receptor negative (estrogen-receptor and progesterone-receptor negative) and HER2 positive. HER2-enriched cancers tend to grow faster than luminal cancers and can have a worse prognosis, but they are often successfully treated with targeted therapies aimed at the HER2 protein, such as Herceptin (chemical name: trastuzumab), Perjeta (chemical name: pertuzumab), Tykerb (chemical name: lapatinib), Nerlynx (chemical name: neratinib), and Kadcyla (chemical name: T-DM1 or ado-trastuzumab emtansine).
  • Normal-like breast cancer is similar to luminal A disease: hormone-receptor positive (estrogen-receptor and/or progesterone-receptor positive), HER2 negative, and has low levels of the protein Ki-67, which helps control how fast cancer cells grow. Still, while normal-like breast cancer has a good prognosis, its prognosis is slightly worse than luminal A cancer's prognosis."

On the Mammaprint testing, you might also check with Agendia to see if they can reduce or eliminate the cost of the test if your mom's insurance will not cover it. Because the test is used to determine benefit of adding chemo to treatment insurance will often not cover it for those for whom chemo is a certainty.

lilych - one of the reasons most oncologists pull periodic complete metabolic panels through treatment is to monitor liver and kidney function because chemotherapeutic agents are filtered out of the body by those two avenues. It is not uncommon to see impaired function during treatment, and a normalization over time once it is done.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Sep 30, 2019 02:23PM neeli wrote:

Thank you for the information, Special K.

I have also had elevated levels easily by 50 points during chemo. I just finished my chemo last week and i have to see how the numbers will be in coming days.

My MO recommends Tamoxifen. Although i have read a lot AIs are better at preventing recurrences but it is post menopausal. Some MO recommend lupron shots + AI for pre-menopausal women. This Tamoxifen v/s AI seems like lottery draw to me, I do not know what will work. Also Tamoxifen carries uterine cancer risk.

Dx 4/24/2019, DCIS/IDC, Right, Grade 3, 3/10 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 6/4/2019 Perjeta (pertuzumab) Chemotherapy 6/4/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/5/2019 Herceptin (trastuzumab) Surgery 10/16/2019 Mastectomy: Right Targeted Therapy 11/6/2019 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 12/5/2019 Whole-breast: Breast, Chest wall
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Sep 30, 2019 02:39PM LilyCh wrote:

neeli, my wife is taking Tamoxifen. We asked the MO about the uterine cancer risk last week and she said it would be fairly small. per https://www.breastcancer.org/treatment/side_effects/endo_cancer, it also says: "According to the American Cancer Society, the risk of developing endometrial cancer from tamoxifen is about 1 in 500 — a small risk, but higher than that for women in the general population. Tamoxifen also slightly increases the risk of uterine sarcoma, a cancer that begins in the muscle of the uterine wall.".

Dx 6/5/2018, IDC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 7/12/2018 Perjeta (pertuzumab) Targeted Therapy 7/12/2018 Herceptin (trastuzumab) Chemotherapy 7/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/21/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/14/2019 Whole-breast: Breast Hormonal Therapy 3/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 30, 2019 09:31PM ElaineTherese wrote:

neeli,

I'm doing ovulation suppression (but Zoladex not Lupron) + an AI (Aromasin). I've been on this regimen for over four years. It gave me full-blown osteoporosis, but I'm now getting Prolia shots, so I've improved to osteopoenia. It gave me hot flashes and mood swings (gone, thanks to Celexa). But, at least I'm not as worried about endometrial cancer or uterine sarcoma. Tamoxifen or AI -- they all have their side-effects, possible problems.

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 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Oct 1, 2019 08:44PM 1207262 wrote:

Continuing online research, I am very concerned about Crosstalk… I know I briefly mentioned it before, but now I am very worried.

The tumor is very high ER and PR, both in the nineties with the ER almost 100%. ICH was indeterminite

If my mother doesn’t reap the full benefits of endocrine therapy, I’m very worried, considering the percentages.

Are there any tests to determine? Does anyone know more information on this? Would the oncologist be able to help with individualized information?

Is the crosstalk a guarantee for +++ patients or is it something that sometimes occurs? If so, do they know the frequency?

Very worried about this…

Would ovary removal decrease risk in any significant way this cross talk potential? My mom is 52, so I don’t think early menopause would be a serious risk factor. She still gets her periods now though and my nana did not go into menopause until she was in her early 60s.

It’s still so early in this ordeal, but I’m afraid for the potential of ineffective endocrine therapy in the future.

Sorry for my scatterbrained question

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Oct 1, 2019 09:27PM 1207262 wrote:

https://www.breastcancer.org/research-news/her2-pos-bc-no-herceptin-response


Additionally, this is alarming to me. Would all this Herceptin and chemo in the neoadjuvant setting be almost futile?

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Oct 1, 2019 10:17PM - edited Oct 1, 2019 10:17PM by SpecialK

I feel safe in saying that the majority receiving neoadjuvent chemo actually see the benefit in the form of tumor shrinkage, quantified by imaging done at intervals and by palpation. If tumor size is thought to be reliably documented at treatment inception, achieving significant shrinkage or pCR at surgical removal bears out the efficacy of treatment. Enough patients see this type of response that treating this way is definitely not futile. Are there some who won't respond - yes, but they are few. Are there some who respond but recur later - either Her2+ driven or estrogen driven, yes. Does this happen to everyone, no - statistics show increased survival with this standard of care. I don't think we are at the point of testing to be able to personalize treatment plans based on levels of estrogen and HER2, and I don't believe testing exists to determine who may experience resistance, but I think it is more common in lengthy treatment such as for more advanced stage patients. There is no denying the benefit of current treatment practices for early stage patients and advanced stage patients alike, and in the time since the HERA trial advances have been made with new chemo drugs, additional targeted therapies, and innovative surgical and radiation techniques.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Oct 1, 2019 10:37PM Taco1946 wrote:

1207262 - In many ways, diagnosis is the scariest time as there are so many questions. My understanding is that the chemo and Herceptin is used to treat the HER2 and the AI's or tamoxifilin is used to suppress hormones, progesterone and estrogen. (The pathology report on my HER2 status report wasn't even back until after both surgery and radiation. I though I was going to MO for AI prescription). I am not following your conclusion that chemo would be futile. I am glad I did both Herceptin and AI's. If your Mom is choosing chemo, she has time to think about her hormone suppressor. And she can consider whether she wants a total hysterectomy so she can take AI's and not worry about uterine or ovarian cancer or other SE's of tax. (I had one at age 37 for a non-cancer reason and have never sorry. My sister bled until she was 60 like your grandmother).

Sadly, none of us knows if we, and not someone else, are the 1 in 100, or 20 in 100 or whatever for a treatment protocol is chosen. We can choose to follow a recommended protocol or get a second opinion or walk away. While having an involved support system is vital, in the end it will be her choice. I hope you are able to attend her appointments as she thinks through all of this. Your questions and her doctor's answers may make both of you more comfortable with what's next. And as I said when I started, once a treatment plan is in place, it's a little less stressful. Stay close and get her here too.

Taco

Dx 11/22/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Radiation Therapy 12/29/2016 Balloon-catheter: Breast Chemotherapy 2/3/2017 Taxol (paclitaxel) Targeted Therapy 2/3/2017 Herceptin (trastuzumab) Hormonal Therapy 12/4/2017 Femara (letrozole) Targeted Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Oct 1, 2019 11:38PM 1207262 wrote:

Hi Taco and SpecialK,

I think you are right about the diagnosis being the scariest part. The waiting for results was horrible, but this is awful as well. That's crazy you didn't even know you were HER2+ until after surgery! That must have been a shock.

My concern is based on the study I linked that said that low FISH scores and high ER positivity (my mom's is close to 100%) makes Herceptin rendered almost useless. This shocked me to see! When I saw that in conjunction to the studies that say that the crosstalk between HER2 and ER/PR receptors can inhibit endocrine therapy effectiveness I became very concerned and about the lengthy treatment in regards to resistance is if one is on endocrine therapy for five years to a decade and is or was HER2 would this contribute?

My understanding was not really so much on the chemo (but I've read that ER/PR tumors don't fare as well to those usually, either), but to my knowledge the chemo is combined with Herceptin in the neoadjuvant setting (I could definitely be wrong, I'm still pretty new to this!). So, I was worried about that effectivity based on the comments Breastcancer.org's post discussed, then, again, combined with the potential resistance to estrogen inhibition based on HER2 receptors' crosstalk. (It could very well be I am misinterpreting any of this, just trying to understand it all can be intimidating.) Whereas this study (published in 2016, the same as the one discussed in BC.org's linked study) seems to contradict https://www.ncbi.nlm.nih.gov/pubmed/27009140

Of course everything will be up to my mom in the end, no question! She just has expressed many times she wants to do the most preventative measures possible to do her best to never recur, even if the benefit derives only 1%-- she wants it! Getting her on an online forum, unfortunately, I don't think will ever happen hahaha. She also firmly trusts the doctors at their word and isn't one to question them. Of course I trust these doctors, too! They're among the nation's, and likely world's, finest, but I think that questions for them and staying alert about everything is also a good thing. She doesn't want to, so I'm trying to do it for her-- and out of worry, too.

I think I might be reading too much at once and scaring myself or overwhelming myself because while I have a grasp on these concepts, I am by no means equip to completely comprehend the details of full medical analyses…

Again, thank you all so much for your patience and thoughtful replies. It means so much! I very much appreciate your helpfulness and kindness and admire your knowledge and intelligence!




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Oct 2, 2019 01:05AM hapa wrote:

120... - worst case scenario, the herceptin would be useless but the chemo would still be effective. I was also low Her2, high ER+ and my MO's reasoning was that Her2+ cancers are so aggressive that it is best to fight it if there is even any question that it could be Her2+. Herceptin is relatively benign as far as SEs go. I'd do Herceptin and Perjeta again, no problem. I did not get PCR after neoadjuvant chemo but my post surgical pathology showed "probable or definite response to chemotherapy" compared to my pre-chemo biopsy.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Oct 2, 2019 11:36AM MissouriCatLady wrote:

I have a question, please. A friend sent me information on the Budwig diet (flaxseed oil mixed in cottage cheese or Greek yogurt and flaxseed hull lignans). I found a capsule that contains this and ordered it. My friend's mom is a BC survivor at age 94 and used this. This is considered alternative treatment, and I am not looking at it in that way, I have had chemo, surgery, radiation and now autoimmune infusions. Just looking to improve my health and chance of recurrence. She also mentioned bitter melon concentrate capsules. Would anyone please have any information on this to share? I have been reading old posts on other threads. Thank you, Lisa

diagnosed at 55, DX 10/17/18 IDC Left IIB grade 3 0/2 nodes ER+PR-HER2+, 11/7/18 TCHP, 4/4/19 Left Lumpectomy, 4/29/19 anastrozole (name-brand at CVS with a GoodRX coupon), 6/3/19 Rads, HP done 1/8/20, complete response to neoadjuvant therapy
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Oct 2, 2019 12:45PM Ingerp wrote:

Here's a look at some research on flaxseed:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808339/

Bitter Melon Extract:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5630406/

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Oct 2, 2019 01:16PM MissouriCatLady wrote:

Thank you so much, Inger!

Happy

diagnosed at 55, DX 10/17/18 IDC Left IIB grade 3 0/2 nodes ER+PR-HER2+, 11/7/18 TCHP, 4/4/19 Left Lumpectomy, 4/29/19 anastrozole (name-brand at CVS with a GoodRX coupon), 6/3/19 Rads, HP done 1/8/20, complete response to neoadjuvant therapy
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Oct 2, 2019 01:43PM Tresjoli2 wrote:

thanks guys Medicating I shall stay calm and carry on!

Diagnosed at age 40 after going for my baseline mammogram. Dx 4/21/2015, IDC, Left, <1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 4/21/2015, DCIS, Left, 4cm, Stage 0, Grade 3 Surgery 5/18/2015 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 6/19/2015 Herceptin (trastuzumab) Chemotherapy 6/19/2015 Taxol (paclitaxel) Chemotherapy 8/7/2015 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 9/24/2015 Whole-breast: Breast Hormonal Therapy 10/11/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 2, 2019 01:52PM countca04 wrote:

Has anyone had Latissimus doors breast reconstruction where they take the muscle from your back for reconstruction. I hear some bad results from years of pain from losing that back muscle.

Cannot do tummy or elsewhere and above is what they suggested.

Any words of advice.

Dx 11/5/2018, IDC, Right, 1cm, Stage IIIA, Grade 3, ER+/PR+, HER2+ (IHC) Chemotherapy 12/17/2018 AC + T (Taxol) Surgery 6/6/2019 Lymph node removal: Sentinel; Mastectomy: Right Radiation Therapy 7/23/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 2, 2019 02:02PM countca04 wrote:

Hello Ladies: just started Kadclya yesterday. First infusion was over 90 minutes and next ones will be 30 minutes because I didn't have any problems. #1 of 14 infusions and did about 11 Herceptin.

Bone pain can happen from the Letrosole

Im feeling tired today is all....but also after the 30 rounds of radiation it never got me feeling "back to normal".....kind of forgetting what "normal" is....though yesterday I did get in a long bike ride....that was great (obviously before my treatment)


Kathielen: how did the Latissimus dorsi reconstruction work for you? Im thinking about it??

Dx 11/5/2018, IDC, Right, 1cm, Stage IIIA, Grade 3, ER+/PR+, HER2+ (IHC) Chemotherapy 12/17/2018 AC + T (Taxol) Surgery 6/6/2019 Lymph node removal: Sentinel; Mastectomy: Right Radiation Therapy 7/23/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 2, 2019 06:52PM rljes wrote:

MissouriCatLady - question plz - what is "autoimmune infusions" that you are taking? I have 2 auto immune diseases - curious what is out there to take. Thx

Finished Chemo March 2018, No reconstruction "Going Flat" Dx 6/26/2017, IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+ Surgery 8/21/2017 Mastectomy: Left, Right Dx 8/22/2017, 1/7 nodes, HER2+ Hormonal Therapy Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 2, 2019 07:01PM AngelsGal57 wrote:

Coutca04,

I was on Kadcyla for 8 treatments and I found that if I did the treatment for a shorter period than 90 minutes I had worse SE's such as joint pain,

bowel problems, and the like. I even had issues with breathing and had to use my inhaler multiple times a day. A good friend who was an

Oncology nurse in the office where I go to see my Oncologist confirmed that if you slow down the infusion you have fewer SE's.

Angelsgal

Dx 3/20/2017, Right, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Chemotherapy 5/10/2017 Taxotere (docetaxel) Surgery 10/4/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 11/14/2017 Whole-breast: Breast Hormonal Therapy 7/4/2018 Arimidex (anastrozole), Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 7/26/2018 Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 2, 2019 09:51PM HeartShapedBox wrote:

1207262- like you, I initially read every HER2+ related research report I could find and went into a bit of a tailspin because of what I found. I fixated all the negative aspects like HER2/ HR crosstalk etc (although in my case I think I was looking for valid reasons to NOT do chemo). I met with a breast surgeon who basically insisted in no uncertain terms that I do neoadjuvant chemo, and when I confronted her with the negative research I'd done, she said that in her many many years operating on HER2+ patients who underwent neoadjuvant chemo, almost ALL of them had significant shrinkage of their tumors, and many achieved pCR. I was looking at stats that said only 26% of HER2+ plus HR+ saw pCR after neoadjuvant TCHP (whereas 63% of HER2+ but HR- saw pCR), but I think it's important to remember that ultimately chemo is just one step of the process; the goal of neoadjuvant chemo is to shrink things down enough to get nice clean margins in an aggressive cancer (& to "test" how responsive the cancer is to a particular chemo regimine), not to "cure" the cancer- surgery will still happen no matter what (not to mention the options of radiation and endocrine therapies). And as mentioned, if the Herceptin ISN'T effective on your mom's low HER positivity, there's still the other chemo given alongside it.

I am in the 90s on both HER2 and ER (so not exactly the same as your mother), but after only 2 rounds of TCHP my I had significant, palpable shrinking and softening in my large main tumors and affected lymph nodes, so I know for me it was "worth it" to that end even if don't achieve pCR. I'm still weighing the cost/benefit ratio of hormone therapy, obsessing about HER2 positivity affecting the efficacy of tamoxifen. But if your mother is wanting to do every single thing she can regardless, then she'll do that therapy as well, because for now these are the best options they can offer us, even if they aren't always as effective as we'd like. I believe I read that the long term HER2 crosstalk is MORE likely with tamoxifen vs AIs plus surgical or chemical ovarian suppression (someone correct me if I'm wrong), so that might be worth exploring?

Diagnosed at age 43. Triple + luminal B regional spread to lymph nodes, pathological TNM stage llB after 6 sessions neoadjuvant TCHP (dropped perjeta after 4 doses), initial clinical stage lllA Dx 5/24/2019, IDC, Left, 5cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Targeted Therapy 8/1/2019 Herceptin (trastuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Dx 12/27/2019, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2+ (IHC) Surgery 12/27/2019 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 3/4/2020 Whole-breast: Lymph nodes, Chest wall
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Oct 2, 2019 10:26PM Taco1946 wrote:

120760 - SpecialK is the expert on the research and I will defer to her on that. It is overwhelming. My HER2 status was a shock but I am also glad that my doctors moved my treatment along quickly. Biopsy didn't show the HER2, just the post-surgical path report did. I feel very fortunate to have been able to have balloon catheter radiation which uses the surgical cavity so it has to be done almost immediately post surgery. Three weeks post op I was already done with rads. I admit (being married to a retired physician) that I am generally trustful but my team has taken the time to answer all my questions. Treatment protocols are changing rapidly and a major medical center will have to keep up. My personal experience with other medical issues is that I want a physician who is not too far out of residency - DH had two very bad surgical experiences when he trusted the head of the department as did a stage 4 friend. My MO has been especially supportive and has helped me find the AI that has the SE's that are manageable for me (and it does seem to vary). And the communication between primary, BS, MO, and RO has been seamless.

I continue to hope you are close and can go to at least the early appointments with your Mom. A second listener is really important when we are in the fog of recent diagnosis. She is lucky to have you as an advocate.

I'm sorry you can't get her on line. My "starting chemo Feb. 2017" group set up a private facebook chat room and have become VERY close even though our diagnoses were varied. We have both laughed and cried together and have been able to share more pictures that way.

Dx 11/22/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Radiation Therapy 12/29/2016 Balloon-catheter: Breast Chemotherapy 2/3/2017 Taxol (paclitaxel) Targeted Therapy 2/3/2017 Herceptin (trastuzumab) Hormonal Therapy 12/4/2017 Femara (letrozole) Targeted Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Oct 3, 2019 01:16AM goutlaw wrote:

Ok....I'm wondering how many have been on Al's longer than 10 years & any serious side effects and how long?

Dx 4/2013, IDC, 6cm+, Stage IIIA, Grade 2, 3/19 nodes, mets, ER+/PR+, HER2+ Chemotherapy 6/4/2013 AC + T (Taxol) Surgery 12/19/2013 Mastectomy: Left Targeted Therapy Herceptin (trastuzumab)
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Oct 3, 2019 09:34AM MissouriCatLady wrote:

rljes - autoimmune drugs I am taking, just Herceptin and Perjeta. MO asks that I stay on these for a total of a year. These drugs were a part of my chemo TCHP treatments. Hugs to you, Lisa

diagnosed at 55, DX 10/17/18 IDC Left IIB grade 3 0/2 nodes ER+PR-HER2+, 11/7/18 TCHP, 4/4/19 Left Lumpectomy, 4/29/19 anastrozole (name-brand at CVS with a GoodRX coupon), 6/3/19 Rads, HP done 1/8/20, complete response to neoadjuvant therapy
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Oct 3, 2019 01:15PM Lulu44 wrote:

So, Triple positives are considered Luminal B

Dx 6/28/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/5 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 7/16/2019 Perjeta (pertuzumab) Targeted Therapy 7/16/2019 Herceptin (trastuzumab) Chemotherapy 7/16/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/16/2019 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 1/1/2020 Kadcyla (T-DM1, ado-trastuzumab) Surgery 1/21/2020 Prophylactic ovary removal Radiation Therapy 1/27/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/6/2020 Aromasin (exemestane)
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Oct 3, 2019 03:35PM SpecialK wrote:

taco - thanks for the compliment, I think we all have much to contribute to this thread - hard won experience and research - I am constantly learning from everyone here!

lulu - triple positives can be Luminal A, Luminal B, or ERBB (Her2+

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3

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