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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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Mar 22, 2020 02:11PM rljes wrote:

Ha - I knew my MO is an idiot. he said there is no such thing as testing Hormone Levels. I need a new one desperately. I cancelled Tuesdays MO appt. He actually called to ask why - I answered " why should I come in, to talk to you about the weather"? He laughed and said see you in 3 months.

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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Mar 22, 2020 02:13PM rljes wrote:

PORTS : Those who still have ports, how often do you go in to have them flushed? What was the LONGEST?

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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Mar 22, 2020 05:47PM ElaineTherese wrote:

rljes,

I get my port flushed every eight weeks. That's the longest I've gone without a flush.

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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Mar 22, 2020 06:44PM Jstarling wrote:

rljies, I hear you. It is scary wondering whether or not the Anastrazole is doing its job. What is the test that measures how well it is working?


Dx 1/2018, DCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 2/12/2018 Lumpectomy: Left; Lymph node removal Surgery 3/2/2018 Lumpectomy Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Mar 22, 2020 08:58PM morrigan_2575 wrote:

how long do ports stay in for after you finish treatment?

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 22, 2020 09:29PM ElaineTherese wrote:

morrigan,

You can have your port removed anytime after you finish treatment. I've kept mine because 1) I'm paranoid; 2) I go into the infusion room once a month for Zoladex so it's no big deal to get it flushed; and 3) I've never had any problems with it.

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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Mar 22, 2020 10:03PM ByHisGraceTwice wrote:

Elaine — have you had any heart troubles with Herceptin

Dx 11/18/2016, IDC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Surgery 1/30/2017 Lumpectomy: Right Dx 11/18/2019, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (FISH) Radiation Therapy 11/19/2019 External: Bone Dx 3/13/2020, IDC, Stage IV, metastasized to bone Radiation Therapy 3/18/2020 External: Bone Targeted Therapy 4/1/2020 Herceptin (trastuzumab)
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Mar 22, 2020 11:35PM SpecialK wrote:

morrigan - some oncologists would like their triple positive patients to leave their ports in for a period of time after last Herceptin. The rationale behind this is that if Her2+ driven recurrence happens, it generally happens in the first 2-3 years post-treatment. This was the feeling of my particular doctor and I had no issues keeping my port, I had it in for the following six years, but there is nothing wrong with removing your port at the first opportunity - many don't want the reminder and/or their docs have no problem with the decision to take it out.

rljes - I had my port placed at the tie of BMX (I had surgery first) but I due to unrelated skin issues that prompted four additional surgeries, and the discovery of positive nodes requiring ALND, I did not start chemo/Herceptin until 14 weeks after the port placement. My port was never flushed during this time because I think everyone kind of forgot it was there, and I was unaware that it needed to be flushed. It worked perfectly on the first infusion, but I did have it flushed every six weeks post-chemo.

On the subject of testing estrogen - if you are post-menopausal and on AI drugs you can have an extra-sensitive estrogens test done and this gives you a plasma reading of estrogen, but unless you know what your level was before starting you will not know how much the drug has reduced that number. Generally, if you are post-menopausal, you have under 30pg/ml, but this number varies per person, some people even have single digit results on the plasma test when not on an AI. All three aromatase inhibitors Arimidex (anastrazole), Femara (letrozole), and Aromasin (exemestane) work well at significantly reducing the estrogen that is created by the conversion of androgens to estrogen by the enzyme aromatase. When this class of drugs may stop working is when a patient develops resistance, which is usually associated with advanced disease, but can also happen in some early stage patients. This is the reason that when you look at trials for hormonal suppression drugs they are measuring years of disease free survival, and not always the percentage of plasma estrogen reduction. For those on tamoxifen, circulating estrogen is not reduced, rather the drug blocks the estrogen receptors on the breast cells, so estrogen level testing would not be necessary other than initially to double check menopausal status.

byhisgrace - you had asked earlier whether Herceptin is made from a mouse protein - it is a mouse/human chimeric, which as I understand it, is a combination. For dosing, if you receive it every three weeks you receive a loading dose, then a reduced dose that is calculated by BSA (body surface area) - also true for chemo drugs. If you receive Herceptin weekly - either with Taxol only - or with Taxol after AC, I believe you also receive a loading dose, then a reduced dose for the remaining weekly infusions. Most weekly Taxol/Herceptin patients move to every three weeks once the chemo portion is done, so the dose effectively triples at that time through the end of infusions. This is one reason you are weighed each time you come in for an infusion, so they can do the calculation of mg of drug per kg of weight. I personally feel that a slower infusion of Herceptin is preferable to help combat some side effects, particularly any bone or joint pain. All of my Herceptin infusions during my six chemo infusions (Taxotere/Carboplatin/Herceptin) were done over 90 mins. My first Herceptin only was done more rapidly and I had hip and leg pain. My infusion was slowed at my request back to 90 mins, no further problems.

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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Mar 23, 2020 12:37AM - edited Mar 23, 2020 12:39AM by ByHisGraceTwice

SpecialK - thank you.

My friend who had Rituxin, which also is a mouse protein based monoclonal antibody, experienced a horrific reaction. Not common to Herceptin or Rituxin. Coronavirus protocol at my infusion clinic now is patient only. As this will be my first ever infusion of any kind, I'm not looking forward to being alone.

Dx 11/18/2016, IDC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Surgery 1/30/2017 Lumpectomy: Right Dx 11/18/2019, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (FISH) Radiation Therapy 11/19/2019 External: Bone Dx 3/13/2020, IDC, Stage IV, metastasized to bone Radiation Therapy 3/18/2020 External: Bone Targeted Therapy 4/1/2020 Herceptin (trastuzumab)
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Mar 23, 2020 01:27AM SpecialK wrote:

byhisgrace - there is no good time for cancer, but I feel for those of you just beginning treatment or trying to schedule surgery - these are complex times with much uncertainty, with challenges for those providing health care and those receiving it. Hopefully as you begin your treatment those providing your care will be attentive and encouraging, and know we are here to support you in spirit. Hang in there!

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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Mar 23, 2020 01:48AM fluffqueen01 wrote:

Just checking in on everyone and hoping that you are all able to stay as protected as possible, especially those of you in treatment. I am as close to sheltered in as I can be. I did show a couple houses this week but took as many precautions as I could.

We have a new grandson waiting to be born in the next week. DIL is on high stress mode. Daughter flew in from Los Angeles last Monday deciding that is she was going to be stranded, she wanted to do it with some people she could talk too and see the new baby. Then spent the week thinking she should have stayed in LA where the weather was nice and she could hike. Then tonight was glad again she came when they announced that they have shut down the trails, etc.

Here in Indianapolis, even thought the weather has been gloomy and chilly this week, she could get out most days for a run.

I cant remember who asked me a few pages back about Cymbalta side effects, but I didn't really have any that I noticed. Getting off of it is another story. I was prepared when I did it the first time as I had been on effexor for hot flashes and it is similar.

Here's to a short quarantine for everyone, although I am not sure I really think that is going to happen.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Mar 23, 2020 04:48AM morrigan_2575 wrote:

" morrigan - some oncologists would like their triple positive patients to leave their ports in for a period of time after last Herceptin. The rationale behind this is that if Her2+ driven recurrence happens, it generally happens in the first 2-3 years post-treatment. "

Thanks SpecialK. I knew it would stay in post H/P but, wasn't given a timeline. My hair dresser went through chemo for non hodgekins lymphoma (I think) and her port was removed about 6 months after her last treatment. I guess I figured that was normal but, seeing some of the dates here 2+ years got me wondering.

Makes sense that they might want to keep it for the 2 years.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 23, 2020 09:59AM ElaineTherese wrote:

By His Grace,

No, I didn't have any heart problems with Herceptin. However, I was monitored closely (heart scan every three months), and you should be as well. Some women on BCO.org have had heart problems with Herceptin; in most cases, their heart function improved after they stopped taking 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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Mar 23, 2020 10:58AM LaughingGull wrote:

Thanks SpecialK for the explanation on estrogen testing.

Everyone stay confined and safe. Those of you undergoing treatment, hope you get all essential treatment and dont experience delays beyond a few weeks.

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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Mar 23, 2020 11:21AM BJI wrote:

I had my port placed May 30, 2017, have it flushed every 6 weeks. It gives me no trouble, most of the time I forget its there. MO said she was ok with taking it out anytime, I guess I'm little paranoid abour removing it. Coming up on 3 yrs.

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 Chemotherapy 5/30/2017 Taxol (paclitaxel) Targeted Therapy 5/30/2017 Herceptin (trastuzumab) Hormonal Therapy 9/13/2017 Arimidex (anastrozole)
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Mar 23, 2020 07:27PM Taco1946 wrote:

I too was feeling superstitious about removing port following Herceptin but MO felt confident I wouldn't need it so I had it taken it out following my next mammogram after I finished treatment. It's really an individual decision. Just had year mammogram and all is well.

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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Mar 24, 2020 02:14AM ByHisGraceTwice wrote:

SpecialK and Elaine — thank you.

Fluffqueen— here in Dallas the patient only goes in the hospital rule is different for maternity. One person may go in the hospital with mom. Must bring all own food and other needed items as cannot leave. If leaves hospital not allowed back in and no other person may take his/her place.

My hospital is extra cautious from lessons learned from the Ebola patient from a few years ago.

Hope everyone has a terrific Tuesday!

Dx 11/18/2016, IDC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Surgery 1/30/2017 Lumpectomy: Right Dx 11/18/2019, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (FISH) Radiation Therapy 11/19/2019 External: Bone Dx 3/13/2020, IDC, Stage IV, metastasized to bone Radiation Therapy 3/18/2020 External: Bone Targeted Therapy 4/1/2020 Herceptin (trastuzumab)
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Mar 24, 2020 05:15AM morrigan_2575 wrote:

This might be a dumb question but, when does the clock start? Is 1 year DSF post surgery? Post last chemo? Post last H/P infusion?

I'm thinking that with NeoAdjuvant Treatment, the 1 year mark would hit a year after my surgery but, wasn't sure.

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 24, 2020 09:19AM Ingerp wrote:

Morrigan--I'm not sure what you're asking. Do you mean disease free survival? I don't think there's a standard definition, at least in this community. There have been discussions about what "cancerversary" means, and it's definitely different things to different people. Maybe there is a medical definition? Others will weigh in but it's not something I think about.

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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Mar 24, 2020 10:44AM morrigan_2575 wrote:

@Ingerp - brain's a little fuzzy this morning. I was asking about cancerversary.

I guess there's no standard or norm that's followed

Dx 1/20/2020, DCIS/IDC, Right, 4cm, Stage IA, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 2/4/2020 Perjeta (pertuzumab) Targeted Therapy 2/4/2020 Herceptin (trastuzumab) Chemotherapy 2/4/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Mar 24, 2020 01:48PM countca04 wrote:

Hello all:

hope everyone is keeping well and safe with the Coronavirus none of us need this extra stress. God pray we all get through okay.


Have had an issue now with UTI and now even blood in the urine (happened two or three times) and then took a Macrobid antibiotic which seemed to help. I can't relate the UTI to anything, is it Letrozole, Kadclya or I had a MUGA scan(heart test with the marker fluids and radiation they pump into you). Back to some intimacy with my dear husband and now on hold again cause of all of this.....

do we need this??


Blood in the urine....didn't go for any further tests, Oncologist is saying see what the GP says and my GP isn't wanting to send me anywhere see what the Oncologist says.....feeling like a yoyo? do you think I should have further tests.....any experience with this ....

UTI...probably now the third time since early February.....blood only one time last week....

Cant take all this stress with the virus being out there and should I just wait and see,,,,,,any suggestions?

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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Mar 24, 2020 01:56PM - edited Mar 24, 2020 05:31PM by SpecialK

morrigan - I think most count from removal of all "known" cancer, which would equate to surgery date. Keep in mind that the counting point may not have adjusted for those who received neoadjuvent chemo because it was not as commonly done. Prior to about 6-7 years ago neoadjuvent chemo was typically only done for triple negative patients, and those who needed to shrink a large tumor to achieve clear margins from skin or chest wall - so maybe 15-20% of breast cancer patients. Perjeta was approved for early stage Her2+ late in 2013 but only for those with tumors that were 2cm or greater, or for node positive patients, and only for neoadjuvent treatment with Herceptin and a taxane. This began the trend for neoadjuvent chemo for Her2+ patients in general if your tumor is greater than 2cm. The use of Perjeta is more common now - both neoadjuvently and continuing after surgery. Patients with tumors smaller than 2cm often the protocol is Taxol and Herceptin adjuvently, sometimes other regimens are used per MO philosophy.

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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Mar 24, 2020 06:04PM ByHisGraceTwice wrote:

countca04 — Do you take much aspirin? I ask because aspirin was my pain reliever of choice. I took it every day, several times a day, for an old neck injury. Turns out I took too much and put myself in Stage 3 kidney failure. All is fine now — I quit taking aspirin and my kidney function returned to normal after a couple months. BUT — before then, in my whole life I had maybe two UTIs. Since then, I get them frequently and it usually takes two rounds of antibiotics to take care of them.


morrigan — According to my MO the “official statistics” are pegged from the date of surgery. For example, if one does not begin chemo treatment within 90 days of surgery one is not counted in any disease progression or survival statistics. Personally, I use the date I received the call telling me the biopsy’s pathology results, November 18, 2016, for my cancerversary.

Dx 11/18/2016, IDC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Surgery 1/30/2017 Lumpectomy: Right Dx 11/18/2019, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (FISH) Radiation Therapy 11/19/2019 External: Bone Dx 3/13/2020, IDC, Stage IV, metastasized to bone Radiation Therapy 3/18/2020 External: Bone Targeted Therapy 4/1/2020 Herceptin (trastuzumab)
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Mar 25, 2020 03:40PM rljes wrote:

Special K- what is your opinion please: taking Tamoxifen post menstrual - I had a complete hysterectomy 20 years ago. I started on Arimidex, and was severely allergic to it, My MO gave me Tamoxifen, which I have not started yet.

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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Mar 25, 2020 04:11PM - edited Mar 25, 2020 04:16PM by SpecialK

rljes - I am also post-menopausal, had a total hyst/oooh nine years prior to diagnosis. My MO placed me on Femara, his med of choice for triple positives. At the five year point I had the BCI (Breast Cancer Index) year done to help determine whether to continue taking an aromatase inhibitor. My result was unfortunately that I had a high risk of recurrence coupled with a low benefit from anti-hormonal medication. While on Femara I went from pre-existing osteopenia to the edge of osteoporosis so I had started on Prolia just six months into Femara. My MO asked me to stay on Femara beyond five years and I asked about switching to Tamoxifen since it is thought to build bone in post-meno women. He indicated that he preferred I stay on Femara and cited the Her2+/ER+ crosstalk with Tamoxifen and the superior performance of AI drugs. I feel that if AI drugs are not tolerable for you then Tamoxifen would be better than nothing - and I would personallytake it if I could not tolerate AIs, but it is important to be aware of the potential resistance issues. This is not to say that tesistance can't happen with any anti-hormonal therapy. Here are some links about this:

https://cancerres.aacrjournals.org/content/72/21/5625

https://journals.sagepub.com/doi/full/10.1177/1758834016665077

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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Mar 25, 2020 08:00PM hapa wrote:

SpecialK - what was your MO's reasoning on keeping you on Femara if BCI showed no benefit? Especially seeing as you had negative SEs (the osteoporosis)?

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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Mar 25, 2020 08:32PM - edited Mar 25, 2020 08:55PM by SpecialK

hapa - my hyst/oooh was done when I was still pre-meo and that loss of estrogen definitely contributed to my pre-diagnosis osteopenia. I fit the physical profile for osteoporosis so I might have developed it in time anyway. I was started on Prolia almost immediately and was an exceptional responder. I regained 29%, the most of any patient of my MO. I had no side effects from Prolia and stayed on it for six years. Even though the BCI indicated low benefit, my MO felt that low was not the same as zero - we had a lengthy discussion about cost/benefit and since Prolia was working and I had relatively mild side effects from Femara it seemed reasonable to stay on it - at least for a while. I did ask for a PET scan since it was conceivable I had been receiving less protection in the first five years, and my MO agreed. I ended up staying on AIs for 7.5 years total.

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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Mar 26, 2020 06:55AM ByHisGraceTwice wrote:

I'm blessed and grateful yesterday went well.

Did radiation early, before going to hospital for port placement. Pain not bad now unless I forget and reach over for something, but enough it kept me awake last night.

Surgical Oncologist asked if I had a preference for where he put it. I said just away from bra strap. He laughed and said "I learned that lesson a loooong time ago." He put it upper right side under collarbone a bit towards the middle.

This is the third surgery SO's done for me — an open transduodenalspinchteroplasty in 2013 for an obstructed common bile duct, laparoscopic partial mastectomy in 2017, and today's port. Second at this hospital: excellent facility and outstanding surgeon.

Last week, all elective procedures at the hospital were cancelled indefinitely. Only requests for "emergency surgery" can be submitted for scheduling. Every request now is evaluated by the hospital's full medical review board. Nineteen cases were sent to the board for today's schedule. Humbling — ten were rejected; mine was one of nine approved.

With my new power port the hospital sent me home with delicious chicken noodle soup in a bigglass jar, crackers, stainless steel tumbler, and a Diet Coke.

Thank you all for your kind words, sharing your experiences, and support.

Dx 11/18/2016, IDC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Surgery 1/30/2017 Lumpectomy: Right Dx 11/18/2019, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (FISH) Radiation Therapy 11/19/2019 External: Bone Dx 3/13/2020, IDC, Stage IV, metastasized to bone Radiation Therapy 3/18/2020 External: Bone Targeted Therapy 4/1/2020 Herceptin (trastuzumab)
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Mar 26, 2020 09:43AM AngieB92 wrote:

ByHisGrace - sounds like your hospital and surgeon are doing things right! Glad you are home with your port

Dx 8/8/2019, IDC, Left, 2cm, Stage IB, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/17/2019 Perjeta (pertuzumab) Targeted Therapy 9/17/2019 Herceptin (trastuzumab) Surgery 3/3/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 4/10/2020 Kadcyla (T-DM1, ado-trastuzumab)
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Mar 26, 2020 12:28PM AngelsGal57 wrote:

Hello my friends, AngelsGal here!

I go in for my Kadcyla treatment tomorrow. So glad that the hospital is only a block away and they screen everyone as they walk in the door for fever. I am praying that staying isolated during this next 4 months works and I don't get sick. Big blessing was being approved for temp disability in less than 24 hours. Never seen this happen so quickly.

Be encouraged everyone that this virus will eventually end and the stress and fear that so many are experiencing will be replaced by hope and peace in the meantime.


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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