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Topic: TRIPLE POSITIVE GROUP

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 31, 2011 05:30AM - edited Dec 10, 2012 06:55AM 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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Dec 12, 2020 09:55AM AngieB92 wrote:

Hi Anna!

My tumor went from 15mm to 2mm after TCHP. Between my last TCHP I had three Herceptin treatments. I was switched to Kadcyla and started taking Tamoxifen the same day. Neither have been bad at all.

I wish you luck in finalizing the next phase of your treatment. I agree that the more you can throw on it the better

Dx 8/8/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 9/16/2019 Perjeta (pertuzumab) Targeted Therapy 9/16/2019 Herceptin (trastuzumab) Surgery 3/3/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 4/9/2020 Kadcyla (T-DM1, ado-trastuzumab)
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Dec 12, 2020 10:42AM ElaineTherese wrote:

Hi AnnaTheBrave!

I've been doing AI + ovulation suppression for over 5 years. (I was 46 when diagnosed and still premenopausal.) Here are some side effects that I experienced:

* Changes in my hormonal balance have always made me moody; AI + OS was the same. My MO prescribed a low dose of Celexa and I've been fine, emotionally.

*AI + OS gave me full-blown osteoporosis; MO prescribed Prolia, and my bone density has improved.

* AI + OS gave me hot flashes, especially in the evening. However, the longer I've been on this regimen, the fewer hot flashes I've endured. Also, it helps to sleep with a ceiling fan on.

My cancer was 95% ER/95% PR.

Good luck!


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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Dec 12, 2020 12:53PM morrigan_2575 wrote:

i don't know if there's any study that shows Nerlynx after HP my understanding is that it was tested after Herceptin. However, to my knowledge Herceptin is the heavy hitter in the HP protocol. Similarly Kadcyla was studied against Herceptin not Herceptin and Perjeta but, I don't think Perjeta adds a huge amount of benefit compared to Herceptin (if that makes sense).

I'm on Tamoxifen until I'm done with Kadcyla. I don't know if my MO plans to go to AI or Tamoxifen for a couple of years before AI. I've heard different things, AI+Supression is slightly better but, comes with me SEs. I'll tackle that in the spring, no point in getting ahead of myself. I tolerate Tamoxifen well, I don't know how I will handle AIs.

I've already told my MO I want Nerlynx after Kadcyla and, that does seem to be the new standard of care for Triple+ patients. I see a lot of ladies (in my Facebook groups) going to Nerlynx after Kadcyla or Herceptin.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 14, 2020 11:06AM hapa wrote:

Anna - there's a lot of controversy over how effective Nerlynx really is, especially considering the negative side effects that most women suffer while on it. That being said, I took it for a year and had very mild side effects. I would take it again. I suggest you go ahead and try it and see how you do. If it's negatively affecting your quality of life, you can always stop taking it. Even women who really struggled with side effects have returned to normal after stopping. We had this whole thread on it, which people still occasionally post on:

https://community.breastcancer.org/forum/80/topics/870980?page=1

I'm also doing OS + AI in lieu of tamoxifen. I had full blown osteoporosis at my baseline DEXA but my MO said my fracture risk was low enough to not take any biphosphonates for it so I decided to treat it by taking/eating more calcium and doing resistance training. My one year scan showed significant improvement in bone mineral density even though I did very little actual intervention. Go figure. I have no insight on your PCR question, unfortunately.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) 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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Dec 14, 2020 02:35PM - edited Dec 14, 2020 03:15PM by LaughingGull

Hi,

Since we are mentioning Perjeta vs Herceptin I just wanted to post the 6y results of the effect of adding Perjeta to Herceptin, which were published earlier this year. For those of us hormone positive with positive nodes, the effect is very significant, we are talking about 30% reduction in your remaining risk. Very, very encouraging.

LaughingGulll

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Dec 14, 2020 02:44PM - edited Dec 14, 2020 03:13PM by LaughingGull

And since the 8-years result of the Extenet trial for Nerlynx (Neratinib) were just presented last week in San Antonio, I am going to post that here, too. The trial compared Neratinib vs placebo, and the graph below shows the comparison of survival in the subgroup of HR+, HER2+ patients with residual disease (i.e. no PCR) after neoadjuvant therapy that included Herceptin (but not Perjeta) and who started Neratinib less than 1y after finishing Herceptin, in the graph below "HR+/<1 year no PCR". Also very significant -the caveat being that the study had not been powered for this type of subgroup analysis, i.e. there is no guarantee that the two subgroups were equivalent/comparable.

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Dec 14, 2020 02:46PM - edited Dec 14, 2020 03:13PM by LaughingGull

AnnaTheBrave, if I was in your feet I would get the supression + AI, plus Kadcyla plus Nerlynx. Everything and the kitchen sink.

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Dec 14, 2020 02:47PM morrigan_2575 wrote:

Thanks for posting! I saw the Neratinib stuff you posted in that thread.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 14, 2020 02:49PM - edited Dec 14, 2020 03:09PM by LaughingGull

hapa, good to see you. Congrats on improving your bone mineral density! Would you share your calcium intake and resistance training plan?

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Dec 14, 2020 03:08PM - edited Dec 14, 2020 03:15PM by LaughingGull

Morrigan, you are welcome. The effect of Nerlynx for that subgroup is big. The trial didn't compare Nerlynx against Herceptin+Perjeta, but Perjeta and Nerlynx work in very different ways. I am glad to see that the results at 8y confirm that the protective effect against recurrence and death of Neratinib was real -there is no way this was a fluke. Today, they offer Nerlynx to anyone with residual disease, but only two years ago I had to fight so hard to get it -I had to change oncologist and hospital.

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Dec 14, 2020 03:34PM YesIamaDragon wrote:

Morrigan -- I am not going to pull out my copy of the study right now*, but I recall somewhere around 30% of the patients in the KATHERINE trial (Kadcyla) had gotten perjata.

* crazy day at work and extra tired after #13 of kadcyla (or as my DH calls it, "Cad-zilla", which is feeling more appropriate!)

Dx 6/2019, IDC, Right, 2cm, Grade 2, ER+/PR+, HER2+ Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Surgery Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Dec 14, 2020 06:49PM morrigan_2575 wrote:

"Morrigan -- I am not going to pull out my copy of the study right now*, but I recall somewhere around 30% of the patients in the KATHERINE trial (Kadcyla) had gotten Perjata."

That is interesting so it would seem that Kadcyla improves upon Herceptin and Herceptin/Perjeta.

"Today, they offer Nerlynx to anyone with residual disease, but only two years ago I had to fight so hard to get it -I had to change oncologist and hospital"

I do see a lot more women getting it, especially in my Triple+ Facebook Group. When I asked about it in February the Doctors about it they weren't enthusiastic. I'm going to bring it back up in the Spring when I get closer to the end of Kadcyla because I really want it.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 15, 2020 04:06AM YesIamaDragon wrote:

I am nearing the end of Kadcyla, and yesterday I sent my MO a message to warn her that I would be asking about Neratinib :) I am pretty sure she won't try to talk me out of it, even though it hasn't been studied in us Kadcyla folks.

Morrigan -- you must be past the halfway point, right?

Dx 6/2019, IDC, Right, 2cm, Grade 2, ER+/PR+, HER2+ Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Surgery Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Dec 15, 2020 11:16AM morrigan_2575 wrote:

@YeslamaDragon - Yes, I am going for #9 next week. I'm not having major SEs with Kadcyla but, I'm still counting down to my end date in the Spring. Fingers crossed that my Echo holds and I won't need a break after my next Echo (February).


Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 15, 2020 02:21PM Fab4mom wrote:

LaughingGull - thank you for sharing the results of the neratinib study. I asked my oncologist about this,and she said she was attending the conference in San Antonio and we would discuss it for me after she saw the results of the study. I'm triple positive with residual and currently have done 4 of 14 kadcyla. I think I'll push hard for the neratinib, even though I can't stand the idea of another year of treatment. Those look like significant results.

Dx 1/16/2020, IDC, Left, 6cm+, Stage IIB, Grade 3, ER+/PR+, HER2+ (DUAL) Chemotherapy 2/12/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/7/2020 Mastectomy: Left, Right Surgery 7/7/2020 Mastectomy: Left, Right Surgery 7/14/2020 Lymph node removal: Left, Underarm/Axillary Hormonal Therapy 9/30/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 9/30/2020 Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Dec 15, 2020 03:01PM ajminn3 wrote:

Laughing Gull- thanks so much for sharing that info! I have 2 HP infusions left and was leaning towards not pushing my MO about neratinib (he hasn’t brought it up at all), but now I think I’m going to push hard for it. At worst, I take it and have to drop it...but I’m willing to throw anything at this beast to keep it away!

Dx 12/2019, DCIS, Left, 6cm+, Stage 0, Grade 2 Dx 1/2020, IDC, Left, <1cm, Stage IIA, 1/3 nodes, ER+/PR+, HER2+ Hormonal Therapy Aromasin (exemestane), Zoladex (goserelin) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 15, 2020 03:19PM hapa wrote:

LG - I have been taking calcium supplements once a day whenever I remember (so about 30-50% of days) and just incorporating calcium-containing things in my diet. I drink my coffee with more soymilk, I eat my oatmeal with soymilk, I use fortified nutmilk instead of coconut milk whenever possible (so like in baking but not in curries). I use blackstrap molasses instead of sugar or honey where I can, I get the tofu that is processed with calcium and if I get non-dairy yogurt I make sure it has calcium as well (most of it does not). Oh, and the OJ with added calcium as a base for my smoothies, which I rarely drink. By no means is any of this on any kind of schedule or routine; it's just small substitutions wherever they can be made. I mean, I only really drink OJ in smoothies and I only drink those maybe twice a month. I am a trail runner but have picked up some road running just out of convenience (I don't have to drive anywhere so I can do it in the mornings in the winter) and I think that might have helped with the bone density in my hips. My spine has seen less improvement; I have been doing very intermittent resistance training with resistance bands. I had been using resistance machines in the gym before it closed for COVID and will do so again when it reopens. I feel like it has been not much of an effort and yet have gotten a very good return. My MO is adamant that I don't need any treatment for osteoporosis regardless because my 10-year fracture risk is low. You can calculate your fracture risk here.

Good luck to everyone trying to get Neratnib. I wish I could have had Kadcyla, as I had residual disease and the benefit of it seems pretty great, but it is what it is so I'll just have to keep my fingers crossed.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) 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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Dec 15, 2020 06:59PM Taco1946 wrote:

Suggestion for remembering to take your supplements - put it somewhere you always have a routine - on the kitchen table, by the coffee pot, near your tooth brush. Whatever works for you. I take mine as part of my get dressed in the morning routine. If I'm rushing out to golf, I at least put the bottle on the bathroom counter so I will remember when I get back.

I am absolutely amazed how treatment regimes have changed in just 4 years!

Dx 11/22/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Radiation Therapy 12/28/2016 Balloon-catheter: Breast Chemotherapy 2/2/2017 Taxol (paclitaxel) Targeted Therapy 2/2/2017 Herceptin (trastuzumab) Hormonal Therapy 12/3/2017 Femara (letrozole) Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Targeted Therapy
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Dec 15, 2020 08:36PM ajminn3 wrote:

Haha- I finally gave in and got a “pill dispenser” so I could make sure I got my meds/supplements everyday. I joke I’m 35 going on 85, but it has really helped me keep up on everything!!

Dx 12/2019, DCIS, Left, 6cm+, Stage 0, Grade 2 Dx 1/2020, IDC, Left, <1cm, Stage IIA, 1/3 nodes, ER+/PR+, HER2+ Hormonal Therapy Aromasin (exemestane), Zoladex (goserelin) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 16, 2020 06:44AM - edited Dec 16, 2020 06:45AM by LaughingGull

Thanks hapa. I have doing more or less the same, but in the last five months very consistently. More cheese, more yogurt, more kiwis, almonds, chia seeds, dried figs, canned sardines...all things calcium. I also got the pill dispenser. For me, it works and it's the only thing that works.

And you are right, hapa, that the real deal for us with residual disease was Kadcyla. Like you, I wish I had been able to get it. I blame my (then-beloved) oncologist, for not being on top of the latest developments, beyond the established standard of care. He should/could have switched me, before I reached the tail end of the H-P course, but instead he dragged his feet until it was too late. Hopefully Herceptin + Perjeta + Neratinib will work for us.

Fab4mom, good that your MO will attend the SABS conferences. But these results have been out since October, and they confirm prior results taken at the 5y mark. Your MO shouldn't need to attend that conference to get the story straight and make up his/her mind one way or another. Not saying this makes sense for you, since you are already getting Kadcyla. But it just pisses me off when doctors are slow to keep up, then procrastinate further when you ask for an informed opinion about developments they ignore. Sorry for the venting.

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Dec 16, 2020 08:58AM Iamloved wrote:

Reading these posts about Doctors not keeping up on treatments makes my 7 hour drive to Mayo seem like a wise choice. They come provide the treatment plan for my breast clinic and oncologist who is only 2 1/2 hours away. I did surgery at Mayo because #1 I love my breast surgeon and #2 I assume the Doctors here are a cut above to be employed here. So far so good.

Surgery December 1 2020 Lumpectomy and oncoplastic surgery Dx 8/8/2018, IDC, Right, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/30/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 5/14/2020, IDC, Right, 6cm+, Stage IIB, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 7/14/2020 Herceptin (trastuzumab) Chemotherapy 7/14/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Dec 16, 2020 10:06AM Fab4mom wrote:

I had to go ahead and get a pill box too, even though alot of my daily meds are just supplements or pepcid. I just couldn't keep it straight sometimes if I took my pills or not. I also feel like I'm going on 85, but it's been so helpful. I fill it each Sunday morning and I'm good to go all week. Also helps me keep on top of my tamoxifen so I don't run out.

Dx 1/16/2020, IDC, Left, 6cm+, Stage IIB, Grade 3, ER+/PR+, HER2+ (DUAL) Chemotherapy 2/12/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/7/2020 Mastectomy: Left, Right Surgery 7/7/2020 Mastectomy: Left, Right Surgery 7/14/2020 Lymph node removal: Left, Underarm/Axillary Hormonal Therapy 9/30/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 9/30/2020 Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Dec 16, 2020 07:52PM pbtriplepositive wrote:

Hello everyone, new to the forum. I was diagnosed with 1.8cm TP with SN negative BC in Nov 2020. I had a lumpectomy and am going to start chemo plus herceptin hopefully soon. The confusion started with two oncologists indicating two different chemo regiments: TCH or TH. I will receive full year of herceptin, radiation and hormone blocker meds for 10 years. The oncologist recommending TCH indicates she prefers this for me because I'm 43 and the size was on the larger side of “small". Does anyone have experience or any info that could help me. All of this is stressful and info overload but this another level of stress. Thank you

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Dec 16, 2020 08:30PM ElaineTherese wrote:

Hi!

In recent years, oncologists have been willing to prescribe Taxol + Herceptin for small HER2+ tumors. I did TH, (along with Adriamycin + Cytoxan), and I found it to be a very doable chemo regimen. I did my TH for twelve straight weeks, and found it to be easier than A + C. My chemo brain went away, and my worst side effect was diarrhea, which I managed with Imodium. TH is also associated with peripheral neuropathy. I had a little neuropathy in my fingertips.

Taxotere + Carboplatin + Herceptin is a tried and true regimen for HER2+, but it does pack more of a wallop. That's why there's typically a 1-2 week break between each dose. TCH can cause gastrointestinal distress (nausea, heartburn, diarrhea, constipation, etc.). Also, there's a very very very small percentage of women who do TCH and suffer from permanent hair loss.

I did AC + TH because my tumor was big (5 cm.+), I had a compromised node, and my oncologist said that is was replicating like kudzu. That's an aggressive regimen, but I had an aggressive cancer. I was 46 when I was diagnosed, and I'm not sorry I did six months of chemo.

((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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Dec 16, 2020 09:25PM - edited Dec 17, 2020 04:32AM by SpecialK

pbtriple - there are a few members who post on this thread regularly who had node negative tumors under 2cm and received Taxol and Herceptin only. Generally it is a regimen that is now given adjuvently (post-surgically) although a number of years ago almost all regimens were adjuvent. Here is a link to the Dana Farber study of this regimen and also the 7 year follow up. For patients who fit the subset for applicability this is very effective and has the potential for fewer side effects because it is a single chemotherapeutic agent. Hope this is helpful and if you look at the signature lines below member posts you may see someone on this thread who has done TH only - might be worth a private message to them, and there is also a thread about Taxol that I will link as well - the link will start you on the last page of the thread, so you can always read back.

https://www.nejm.org/doi/full/10.1056/nejmoa140628...

https://pubmed.ncbi.nlm.nih.gov/30939096/

https://community.breastcancer.org/forum/69/topics...


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, 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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Dec 17, 2020 10:42AM pbtriplepositive wrote:

Thank you specialK and ElaineThere!

Any tips on how to prevent neuropathy? I have read using ice packs on hands and feet during chemo helps but wasn’t sure if that compromises the chemo from reaching the hands and feet.

Thank you again. As scary as this is, it’s nice to know there are others who u set stand what I’m going through

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Dec 17, 2020 11:23AM morrigan_2575 wrote:

ice chips for mouth sores, ice mitts and gloves (or ice packs) for your hands and feet. B6 and Alpha Lipoic Acid and/or Glutamine for Neuropathy but, run everything by your MO ro make sure they are OK with what you're taking.


Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Surgery 6/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/19/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2+ Targeted Therapy 7/5/2020 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 8/9/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 17, 2020 04:54PM MsMurphy wrote:

Hi everyone,

I posted this question in the December chemo group as I get my first infusion tomorrow but you all might have a better answer. My infusion is scheduled for 30 minutes (TCH). I'm wondering if that was an error as from what I've read, it generally takes 3 hours. No complaints if it really is only 30 minutes but I like going in to new things as prepared as possible.

Thanks for any responses and advice you may have for me.

Dx 8/27/2020, DCIS/IDC, Left, 1cm, Stage IB, Grade 3, ER+/PR+, HER2+ (IHC) Surgery 9/23/2020 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 12/17/2020 Herceptin (trastuzumab) Chemotherapy 12/17/2020 Carboplatin (Paraplatin), Taxol (paclitaxel) Hormonal Therapy
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Dec 17, 2020 05:19PM ElaineTherese wrote:

Yup, it will take several hours, especially as it is your first time. You'll get pumped full of pre-meds as well as the Taxol and Herceptin. Plan accordingly. Bring a book or a device for entertainment. I used to work in the chemo room on a laptop, but I also had a friend visit during the infusions, which was fun. Benadryl is typically given before Taxol, so some patients just sleep through it all. Good luck!

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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Dec 17, 2020 05:31PM YesIamaDragon wrote:

PB: Mets to hands and feet are nearly unheard of, so oncologists are generally ok with icing. The scalp icing I personally would be more worried about. I didn't do either because I was always FREEZING in the infusion suite and found the whole experience unpleasant enough.

MsMurphy: I am guessing that something was lost in translation. The first infusion especially they run everything slowly and have extra long observation between each. I had TCHP so the whole thing was a whole day once you add in getting accessed and waiting for labs to come back and all. Take a bag packed with a warm shawl (and ask for heated blankets! Better still -- find out where the blanket warmer is!), all kinds of snacks and drinks because you might prefer your own to what they offer, a lightweight variety of stuff to do when you are kind of out of it (you will learn what you can and want to do. I got a bunch of stuff like adult coloring books and downloaded books, but ended up at most watching Great British Bake Offs and napping) Wear super comfy clothes too. I also like slip-off shoes so it was easy to put them back on when I wanted to pace or had to go pee (it is a lot of fluid they pump into you). OH! I also found that the flushes (if you have a port) and the anti-nausea meds gave me a horrible taste in my mouth, so I brought lemon drops, which were great. Jolly Ranchers or gum or whatever you like that has a nice strong flavor.

Dx 6/2019, IDC, Right, 2cm, Grade 2, ER+/PR+, HER2+ Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Surgery Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)

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