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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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Jul 30, 2020 02:11PM Cowgirl13 wrote:

I hated my port but I somehow dealt with it. Now that I have read a few people's experience here on this board with having their veins so compromised they had to have their blood accessed from their foot. I also didn't know that I might really need good veins at some point a number of years later due to serious illness. What I did do was have my port out several days after my last Herceptin and was I thrilled to get it out. I didn't even know I was supposed to ask/consult my oncologist and boy was he surprised. What I didn't know if that he would have preferred that I leave it in for 2 years because recurrence with triple positive tends to recur within the first several. Even with that knowledge I still would have had it out. They could just put another damn port in if I needed it later on. So just consider everything and you will be making an informed decision.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/17/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Jul 30, 2020 03:23PM Smichaels11 wrote:

Thank you for the info!! Definitely a lot to consider. Is Herceptin damaging to the veins? Are blood draws still required before each infusion?

Diagnosed at 30 years old. Mom to a 5 year old son. Dx 6/11/2020, IDC, Left, 2cm, Stage IB, Grade 3, ER+/PR+, HER2+ Targeted Therapy 7/1/2020 Herceptin (trastuzumab) Chemotherapy 7/1/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/1/2020 Perjeta (pertuzumab)
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Jul 30, 2020 04:07PM morrigan_2575 wrote:

"Even with that knowledge I still would have had it out. They could just put another damn port in if I needed it later on. So just consider everything and you will be making an informed decision."

I mentioned that to my BS when he said, I'll see you for port removal as soon as you're done with Kadcyla.

His answer was MOs will always want you to keep it in but, he (surgeon) didn't like leaving them in longer than needed because they could always get infected. His answer was if something happens we can always put a new one in.

I can see both points. I've gotten used to the port, it doesn't really bother me. However, I'm not sure I want to keep it in for more than I need it. I guess I'll cross that bridge when I get to 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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Jul 30, 2020 05:54PM ElaineTherese wrote:

Hi Smichaels11!

No, Herceptin isn't damaging to the veins; its worst side effect is that it can interfere with the functioning of your heart. That's why you should be getting a heart scan (I had MUGAs) every four months or so. I did have blood draws before Herceptin; I'm not sure everyone does. In Europe, Herceptin is offered in a pill form.


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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Jul 30, 2020 06:05PM YesIamaDragon wrote:

I am the opposite -- I love my port! And I have good veins (but want to keep them that way)

I have a bony chest and it sticks out, but I got a seatbelt cushion and try not to wear my messenger bag over the port. But the port is one quick stick, never get bruised arms, doesn't take the time to get an IV going.... And I feel like it is insurance against the day it is out, so that my veins will still be good and they NEVER have to stick me on my surgical side and increase risk of lymphedema.

It turns out I need kadcyla anyways as I had residual disease, so extra glad I have kept it in.

Dx 6/2019, IDC, Right, 2cm, Grade 2, ER+/PR+, HER2+
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Jul 30, 2020 06:14PM Smichaels11 wrote:

Elaine, offered in pill form?! Too bad this is not offered in the US! Seems like that would make a lot of our lives so much easier.

Diagnosed at 30 years old. Mom to a 5 year old son. Dx 6/11/2020, IDC, Left, 2cm, Stage IB, Grade 3, ER+/PR+, HER2+ Targeted Therapy 7/1/2020 Herceptin (trastuzumab) Chemotherapy 7/1/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/1/2020 Perjeta (pertuzumab)
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Jul 30, 2020 11:41PM Taco1946 wrote:

I was glad I kept my port through Herceptin. Yes, I had a blood draw before each infusion. I was almost superstitious about getting it out but MO encouraged me to go ahead. I did right after my first mammogram after I was done. It was an easy procedure.

It came up as aside a few posts ago but you should be getting an echo at start and every 3 months until you finish. I had NO SEs from Herceptin but heart damage is a possibility which is why they do the echo.

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) Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Targeted Therapy
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Jul 31, 2020 02:42AM Smichaels11 wrote:

Thanks, Taco. I had an echo and have another one scheduled for a few weeks from now so I imagine this will continue until treatment is finished. My mom died unexpectedly in 2015 from heart failure so that is always in the back of my mind as well. It seems like the general consensus is to leave it in until the end. Not what I wanted to hear, but it makes sense. My rational side knows what its there for but my emotional side wants to be "normal" as quickly as possible. Having triple positive really makes it feel like a marathon. I just want to sprint to the time where I can say I HAD cancer.

Diagnosed at 30 years old. Mom to a 5 year old son. Dx 6/11/2020, IDC, Left, 2cm, Stage IB, Grade 3, ER+/PR+, HER2+ Targeted Therapy 7/1/2020 Herceptin (trastuzumab) Chemotherapy 7/1/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/1/2020 Perjeta (pertuzumab)
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Jul 31, 2020 08:07AM wahoomama87 wrote:

Cowgirl - that's how I feel. I'll leave it in as long as I'm getting Herceptin every 3 weeks, but as SOON as that's over - out it comes.

And Herceptin in PILL FORM?! WHY can't we have that here?!

Dx 3/23/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/4 nodes, ER+/PR+, HER2+ Chemotherapy 4/10/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/10/2020 Herceptin (trastuzumab) Targeted Therapy 4/10/2020 Perjeta (pertuzumab) Surgery 8/24/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Jul 31, 2020 09:21AM SpecialK wrote:

I think the Herceptin available in Europe is not pill form, but rather it is injectable, called Hylecta. It looks like it is FDA approved only as an adjuvant treatment in the US, which may be a reason it is not being discussed often for most TP patients with tumors large enough to be given multi-drug chemo regimens and/or Perjeta, which would be done neoadjuvently. Also, it is a standardized dosing rather than a dose calculated by BSA (Body Surface Area) so some oncologists may be reluctant to use it.

https://www.breastcancer.org/research-news/fda-approves-injectable-herceptin

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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Jul 31, 2020 09:42AM morrigan_2575 wrote:

Question for anyone that might know (will ask my MO next time i see him (6 weeks).

I was reviewing my full surgical pathology report and compared the HR/HER2/Ki-67 to my biopsy pathology.

ER+ 99% (on both)

PR+ 10% biopsy and Negative 0% on Surgical

HER2+ 3+ (on both)

Ki-67 60% on biopsy, 10% on Surgical.

Is it normal that some of them changed/dropped? Also does being ER+/PR- matter much? I would think I'll still be treated the same for Hormone Therapy but, wasn't sure

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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Jul 31, 2020 09:56AM ElaineTherese wrote:

You're right, Special K! It is much quicker than an infusion, in that it's just one shot, administered by a doctor/nurse.

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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Jul 31, 2020 10:20AM SpecialK wrote:

ET - do you remember the member that used to post here Cherry? She is in Sweden and got the injection - that is what I remembered and also remembered seeing that it had been approved for use here relatively recently. Definitely quicker for sure!

morrigan - the way the percentage numbers are arrived at has to do with how the slides are viewed in the lab. The slide is prepared - biopsy and surgical are done the same way - and the pathologist counts 100 cells, and how many contain a receptor - so if your biopsy slide had 99 cells with an ER receptor, you had 99%. These counts can be subjective depending on where the slide prep was done from on the tumor, because tumors are, for the most part, not homogenous. Once receptors are identified one is deemed positive, but very low percentage receptors are sometimes treated as ER-/PR-. Some testing platforms also have a range, rather than a specific percentage number. Keep in mind that since you had neoadjuvent chemo, the cells in the tumor could/would have been affected, downregulating to an extent. FWIW, I too had a low-ish PR reading on biopsy, and then had Mammaprint done from a biopsy sample because my BS was participating in a trial with Agendia Labs. Mammaprint showed me as PR-, which unfortunately, is thought to be a marker for increased aggressiveness. Not much is well understood about the role of PR and you are correct, your anti-hormonal options remain the same.

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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Jul 31, 2020 10:46AM BJI wrote:

I loved my port, in fact finished my year of Herceptin 2 years ago and still have it! Most of the time I forget I have it, have had no issues with it. I go to infusion center every 8-12 weeks and have it flushed. My MO said it can come out whenever I want, for now I am ok with it. Maybe I am being overly cautious, but a little piece of mind just in case.

Bev Dx 4/11/2017, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/26/2017 Lumpectomy: Right Radiation Therapy 5/8/2017 Balloon-catheter: Breast Targeted Therapy 5/30/2017 Herceptin (trastuzumab) Chemotherapy 5/30/2017 Taxol (paclitaxel) Hormonal Therapy 9/13/2017 Arimidex (anastrozole)
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Jul 31, 2020 12:04PM SpecialK wrote:

On the port question - my oncologist wanted me to keep mine for two years post-Herceptin, as a minimum. I ended up keeping it for six years, it was removed in 2017. Mine was a very tiny subclavian port, should have been visible in all necklines except a turtleneck - don't wear often in Florida, lol! - but was so well placed that you couldn't see it. I had a lot of surgical intervention during that time and could have had it removed at any time but I kept it for a number of reasons - my MO wanted me to and I trust him on all subjects, it was placed during BMX by my BS so I had no external scar, he used the mastectomy flap so removing it would mean a new visible scar, having the port flushed every six weeks meant I was on the infusion nurses radar so I could ask questions, get med refills, etc. Also, considering I am a pragmatic person on the whole, I was surprisingly superstitious about removing my port - a number of my experiences during treatment did not go as expected, so I was clinging to my port like it was an evil eye, lol! I was ready to have it out in 2016 but a week prior to that scheduled reconstruction related surgery I had a bilaterally abnormal PET scan, so my MO told the PS not to remove it. When I did have it removed a year later it was done by my PS so I have a beautiful incision line, not noticeable at all.

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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Jul 31, 2020 12:09PM morrigan_2575 wrote:

"morrigan - the way the percentage numbers are arrived at has to do with how the slides are viewed in the lab. The slide is prepared - biopsy and surgical are done the same way -"

I'm going to ask my MO because if I'm reading it right this is most likely a different tumor. I had 4cm of DCIS with several spots of tiny IDC popping through. Looking at the pathology they only tested 1 of the IDC for Hormone Status.

I'm not going to sweat it, nothing I can do about it and since it doesn't change my treatment plan we'll just keep chugging along

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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Aug 1, 2020 08:18AM Fab4mom wrote:

mmorigan - I have heard of peoples pathology changing, but I'm not sure if it's a different tumor. I wouldn't sweat it too much either, your still really ER and Her2 positive either way, so on the right treatment plan

SpecialK - it's nice your ps took out the port so there is less scaring, when I'm done with all my treatment, I am going for a Diep Flap, so hopefully I can do that too

Dx 1/16/2020, IDC, Left, 6cm+, Stage IIB, Grade 3, ER+/PR+, HER2+ (DUAL) Chemotherapy 2/12/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/6/2020 Mastectomy: Left, Right Surgery 7/7/2020 Mastectomy: Left, Right Surgery 7/13/2020 Lymph node removal: Left, Underarm/Axillary Hormonal Therapy 9/29/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 9/29/2020 Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Aug 3, 2020 09:52AM Ingerp wrote:

I never had a port and had no problems with Herceptin. I did not get a blood draw every time like before chemo. And the injectable form of Herceptin was approved by the FDA while I was getting it--I asked how quickly it might roll out in the US but was told these things take time--to train the nurses, manufacture the supply, . . . , surely not in time to affect my treatment. There are several posters on BCO who received it this way--I think it takes about ten minutes, and goes in the thigh.

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 Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Aug 3, 2020 12:44PM Smichaels11 wrote:

Ingerp, thank you for the info! A 10 minute injection in the thigh does not sound like fun... ouch! But it does sound more appealing than an hour long intravenous infusion. Too bad the pill form isn't out there yet.

Diagnosed at 30 years old. Mom to a 5 year old son. Dx 6/11/2020, IDC, Left, 2cm, Stage IB, Grade 3, ER+/PR+, HER2+ Targeted Therapy 7/1/2020 Herceptin (trastuzumab) Chemotherapy 7/1/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/1/2020 Perjeta (pertuzumab)
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Aug 4, 2020 04:14PM AngelsGal57 wrote:

Hello friends its Angelsgal,

It has been a while since I have posted, though I read this every day. Wanted to share what I have found to be true in my case regarding infusions that was confirmed by my friend who was an oncology nurse in the office where I have mine done.

If you do a 90 minute drip rather than a 60 minute drip you will have far less joint and muscle pain in the proceeding weeks. I know it seems like a long time but in the long run for me it is more tolerable on the body in so many ways.

On my final Kadcyla 3 weeks ago I forgot to remind the nurse that I get a 90 minute drip and she did 60 and I had a very rough time recovering on those last 3 weeks from insomnia, to total body joint and muscle pain and headaches.

A 10 minute injection sounds awful to me.

Take care everyone, be encouraged and stay faithfully strong.


Dx 3/20/2017, Right, 4cm, Stage IIA, metastasized to bone/lungs, Grade 2, 0/2 nodes, ER+/PR+, HER2+ 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 Enhertu (fam-trastuzumab deruxtecan-nxki) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Other
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Aug 5, 2020 07:16AM wahoomama87 wrote:

All -

I finished up my last round of chemo, and would like to hear from you all what to expect in terms of side effects when I'm "just" getting Herceptin/Perjeta. It's obviously hard to tell what's from the chemo and what's from the others, so I'm curious what went away for you all and what stuck around. Thanks!

Kris

Dx 3/23/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/4 nodes, ER+/PR+, HER2+ Chemotherapy 4/10/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/10/2020 Herceptin (trastuzumab) Targeted Therapy 4/10/2020 Perjeta (pertuzumab) Surgery 8/24/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Aug 5, 2020 07:18AM morrigan_2575 wrote:

I only had 1 HP but there were no SEs

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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Aug 5, 2020 07:21AM Fab4mom wrote:

I had my third HP only and I don’t have much in terms of side effects. My nose runs and my 💩 are loose, but that’s about it. Very easy to tolerate for me. Good luck

Dx 1/16/2020, IDC, Left, 6cm+, Stage IIB, Grade 3, ER+/PR+, HER2+ (DUAL) Chemotherapy 2/12/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/6/2020 Mastectomy: Left, Right Surgery 7/7/2020 Mastectomy: Left, Right Surgery 7/13/2020 Lymph node removal: Left, Underarm/Axillary Hormonal Therapy 9/29/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 9/29/2020 Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Aug 5, 2020 08:14AM ajminn3 wrote:

I agree with Morrigan and Fab4mom, the SE’s from HP infusions have been few to none for me so far. I’ve done 3 HP infusions so far. Hoping the same to you Wahoomama! To be honest I was expecting a lot of diarrhea (figured people call it poojeta and perjetarrhea for a reason!) but that hasn’t been the case much. Much more tolerable than TCHP for me

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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Aug 5, 2020 09:05AM ElaineTherese wrote:

The taxanes (Taxotere and Taxol) are tough on the digestive system --- they contribute quite a bit to chemo diarrhea. I never had diarrhea while doing Herceptin.

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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Aug 5, 2020 09:24AM Kimmh012 wrote:

Angelsgal, I agree with the 60 or 90 minute infusion. I have always recieved 60 minute HP with an extra bag a fluids. I still have bone and joint pain, but tolerable. When the nurse forgot last year and gave me 30 minutes, I had every SE for 10 days!! 4 more HP to go!!


~ALWAYS AN ADVENTURE~ Dx 3/22/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/3/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 5/1/2019, DCIS, Left, 1cm, Stage 0, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 5/1/2019 Lumpectomy: Left Chemotherapy 5/13/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 6/24/2019 AC Targeted Therapy 9/18/2019 Herceptin (trastuzumab) Surgery 11/6/2019 Lumpectomy Radiation Therapy 1/13/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 4/28/2020 Arimidex (anastrozole), Aromasin (exemestane) Hormonal Therapy 10/15/2020 Arimidex (anastrozole)
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Aug 5, 2020 09:45AM morrigan_2575 wrote:

My first Kadcyla was 90 minutes, 2nd was 30 minutes. I seem to be doing just fine with the 30 minutes but, I have seen others report going to 60 or 90 minutes in order to reduce SEs. I'm going to keep that in my back pocket for now.

With Kadcyla the only SEs I have and they're random, occasional headache, occasional runny nose and loss of appetite (new for cycle 2) for 3-4 days but, I'm totally cool with that - helps lose weight/keep weight down.

The only consistent SE is dry mouth. I always feel like I'm stranded I the dessert.

For HP I just did the 30 minutes infusion (per drug) and didn't have any issues.

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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Aug 5, 2020 09:51AM SpecialK wrote:

I endorse the 90 min infusion - mine with chemo were over 90 mins, but it was accelerated when given without. I did not have issues with bone pain during chemo at all, but OMG I had intractable hip and leg pain for about a week after first targeted therapy only. I asked to slow it back to 90 mins and no further problems. Some who have made this request have encountered pushback from the oncology nurses because it means you are occupying the chair longer. Some centers will charge an extended infusion room fee and /or require the one to order a slower infusion. I always made my chemo appts for first of the day so I could get started without any delays, but when receiving targeted therapy only I made the appt for late afternoon when the infusion room was more empty. That worked out fine. The infusion directions are to give without chemo as rapidly as 30 mins, or as slow as 90 - so doing it slowly is a legit request if it is causing discomfort.

I was one who struggled with the Big D even after chemo was done, infusion room nurses recommended taking a probiotic, which worked.

Congrats wahoo on finishing - I started to feel markedly better at the 6 week PFC point. With targeted therapy alone I had a runny nose and the aforementioned D, which was mitigated. Other than that a mild persistent headache, particularly as I got closer to the end, but handled with Tylenol. Some people experience slower hair growth but I did not, it was slow to start but once it came back it grew at my normal rate

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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Aug 5, 2020 12:21PM morrigan_2575 wrote:

I expect COVID might require more of a fight for a longer infusion time due to the cut down on available chairs. However, we have to do what's best for our bodies in the long run.

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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Aug 5, 2020 01:44PM wahoomama87 wrote:

Thanks everyone! I have had some issued with diarrhea (round 4 was particularly bad for me) but I think it was due to the Taxotere. They reduced by dose by 20% for rounds 5 and 6 and I had almost no issues, so I'm hopeful that the Perjeta alone will not be a problem in that area. I get HP over 90 minutes - 30 for Perjeta, 30 minute break, 30 for Herceptin, so I imagine they will continue that. I have the runny nose too, but with my allergies, I'm use to that. Mostly the only part that bothers me is how it drips out without warning - but I think that will resolve somewhat once I get nose hair back!

Dx 3/23/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/4 nodes, ER+/PR+, HER2+ Chemotherapy 4/10/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/10/2020 Herceptin (trastuzumab) Targeted Therapy 4/10/2020 Perjeta (pertuzumab) Surgery 8/24/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left

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