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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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Nov 2, 2017 10:17PM deni1661 wrote:

Coachvicky - hope your stitches aren't too bothersome and each day gets better. It's good to remind ourselves that the recon is a rebuilding process. I'm still a work in progress with another surgery coming up. I appreciate the expertise of my surgeon and know he is doing his best to give me back what I lost.

Enjoy your vacation!
Dx 7/25/2016, IDC, Left, 2cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Hormonal Therapy 9/6/2016 Arimidex (anastrozole) Targeted Therapy 9/6/2016 Herceptin (trastuzumab) Targeted Therapy 9/6/2016 Perjeta (pertuzumab) Surgery 4/27/2017 Lymph node removal: Sentinel; Mastectomy: Left Surgery 5/9/2017 Reconstruction (left): Stacked DIEP flap Hormonal Therapy 5/17/2017 Femara (letrozole) Surgery 11/29/2017 Reconstruction (left): Fat grafting, Nipple reconstruction
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Nov 2, 2017 10:23PM Meowmmy65 wrote:

Lumpectomy complete. Port in place. I think the worst part of my day was the nuclear injection around the nipple. I have a high pain tolerance, but that made me cry. It burned and hurt. Radiologist is a liar (lol). Said it would feel like bee stings. Ummmm, no. Angry hornets injecting caustic juice? Maybe.

Resting at home now. Ready to move forward.

ATM mutation Dx 8/31/2017, IDC, Right, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/1/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 11/10/2017 Lumpectomy: Right Targeted Therapy 12/6/2017 Herceptin (trastuzumab) Chemotherapy 12/6/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/28/2018 Perjeta (pertuzumab) Radiation Therapy 6/10/2018 Whole-breast: Breast Hormonal Therapy 9/24/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 3/9/2019 Arimidex (anastrozole)
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Nov 2, 2017 10:47PM SpecialK wrote:

All - thanks for the welcome back! We had a great trip - I planned it but didn't tell my husband any details - just put the address in the GPS and he drove. Basically a tour of southern cities, the UNC and U of Miami (he is an alumni) football game, then a last stop at Amelia Island. Relaxing and fun and full of surprises for him!

hap - my insurance contract for Rx was CVS for a long time, just recently switched back to Walgreen's. At CVS I was able to request the manufacturer and they procured it from their warehouse for me. As long as it was a generic they routinely stocked they could provide it, and CVS will usually carry more than one generic of any of the AI drugs.

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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Nov 2, 2017 11:10PM KimCee wrote:

Tresjoli thank you for that reply. I do plan to run, not walk away. I just don't see the benefit outweighing the risk. If I read it right it was 93% for neratinib and 91% for placebo. Both good odds!

Deni, I just needed one of you to agree. I am feeling Letrozole did me fine. I am going to voice this next time I see him.

Meowmmy, oh my gosh, I hear you. First bc I had the shots while awake and it was awful. This time breast surgeon (different one) waited until I was asleep. Thank goodness. Rest and recover well



Dx 8/10/1999, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 8/24/1999 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/9/1999 AT Radiation Therapy 1/5/2000 Whole-breast: Breast Dx 7/31/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 9/27/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/26/2017 Taxol (paclitaxel) Hormonal Therapy Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Targeted Therapy Herceptin (trastuzumab)
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Nov 2, 2017 11:14PM Meowmmy65 wrote:

Hap.... I told them I have tiny veins and the IV had to be ultrasound guided. Nurse and nurse anesthetist both insisted on trying, despite my requests. Three attempts. The blown veins. Finally called the PICC team. She got it in one attempt and didn't hurt me.

Lesson learned. I will absolutely refuse to let anyone "try" again. Ultrasound, PICC team, no exceptions. My poor hand is a mesS.

I've never been so grateful to be unconscious.

ATM mutation Dx 8/31/2017, IDC, Right, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/1/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 11/10/2017 Lumpectomy: Right Targeted Therapy 12/6/2017 Herceptin (trastuzumab) Chemotherapy 12/6/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/28/2018 Perjeta (pertuzumab) Radiation Therapy 6/10/2018 Whole-breast: Breast Hormonal Therapy 9/24/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 3/9/2019 Arimidex (anastrozole)
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Nov 2, 2017 11:20PM Meowmmy65 wrote:

Kim - the doctors acted surprised that it hurt so much, but my technician was great. I will never do that again without being heavily medicated.

ATM mutation Dx 8/31/2017, IDC, Right, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/1/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 11/10/2017 Lumpectomy: Right Targeted Therapy 12/6/2017 Herceptin (trastuzumab) Chemotherapy 12/6/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/28/2018 Perjeta (pertuzumab) Radiation Therapy 6/10/2018 Whole-breast: Breast Hormonal Therapy 9/24/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 3/9/2019 Arimidex (anastrozole)
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Nov 3, 2017 12:16AM SpecialK wrote:

hap - no I am not quite ready for Medicare, I just turned 61. I have insurance through my husband's prior military service. They do contracts with both retail pharmacys (previously CVS, currently Walgreen's), an Express Scripts mail order service.

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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Nov 3, 2017 12:43AM SpecialK wrote:

hap - drug costs are a big problem, I agree. I am very fortunate to have excellent drug coverage, with a low Rx co-pay. I will have the same coverage, in the form of a Medicare supplement, which I reach Medicare eligibility. As far as the Herceptin, most who have decreased LVEF find it to be temporary and Herceptin may be resumed after a break, but there are some who can't continue with Herceptin due to this.

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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Nov 3, 2017 05:01AM - edited Nov 3, 2017 05:16AM by Cherry-sw

I agree with coachvicky that TonLee who started this thread is avery clever lady and she had a very precise way of expressing herself. I also red her answer on this thread where she just listed all her injuries and SE she sustained after the treatments. I am torn between two choices at the moment and wish someone would make it for me. Almost all the time we have to choose between two or more bad things, really bad for us with all these SE and future risks. Only because we were so unfortunate to get this disease. Neratinib is awful but 2% difference is still something, I will try to talk to my oncologist later on in order to see whether I can get it.

I was tolerating Taxol well until probably two infusions back, then I started to get tired on days 3-4. This week it finely got me. I have been in bed since Tuesday sleeping though the days or just laying down, yesterday I decided to go walk to a counselor meeting and whole way I felt like I were 90 years old or a junkie, never did drugs so I wouldn't know but I believe I had trouble to walk straight, my legs were not with me on this. And today came nausea, I have only one infusion left but how am I suppose to start an EC in two and half weeks I have no idea. I also have pain in my liver and back, it feels like I am so done.

SpecialK, your trip sounds wonderful and, coachvicky, good luck on yours. My husband asked me whether we could go somewhere for a week between the treatments and I just told him that I fear of being far away from the hospital right now, like this is the only thing that matters to be near knowing they will take care of me. What a life.

Cherry

Dx 6/28/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 7/18/2017 Lumpectomy: Left Chemotherapy 8/21/2017 Taxol (paclitaxel) Targeted Therapy 8/21/2017 Herceptin (trastuzumab) Chemotherapy 11/27/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin) Hormonal Therapy 1/30/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 3, 2017 06:27AM Suburbs wrote:

Hi all. Well I had an ultrasound yesterday and there were no blood clots found which was very good news indeed. My left arm swelling and pain started at the elbow and moved to my wrist. The elbow is much better and the top of my hand and wrist are more swollen and painful. Go figure. I am not sure what the next move is. I'm back on anti biotics for the drain wound that will not heal. It started to get red and hot again. Thanks for listening.

It's hard to work when you have a setback. Everyone thinks the cancer is behind me but I feel I like I am still in the thick of treatment.

Welcome back SpecialK.
Dx 1/9/2017, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 1/31/2017 Herceptin (trastuzumab) Chemotherapy 2/1/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 6/20/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/21/2017 Arimidex (anastrozole) Targeted Therapy 2/1/2018 Nerlynx
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Nov 3, 2017 08:26AM Cherry-sw wrote:

Suburbs, no clot, good news indeed, I hope the antibiotics work for you and it gets better soon

Dx 6/28/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 7/18/2017 Lumpectomy: Left Chemotherapy 8/21/2017 Taxol (paclitaxel) Targeted Therapy 8/21/2017 Herceptin (trastuzumab) Chemotherapy 11/27/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin) Hormonal Therapy 1/30/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 3, 2017 09:46AM KimCee wrote:

Great news Suburbs...hope the antibiotic kicks in quickly.

I have another question. Do those doing Taxol and Herceptin receive the Herceptin every 3 weeks during Taxol? I was pleasantly surprised at treatment 2 yesterday when it was Taxol only

Dx 8/10/1999, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 8/24/1999 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/9/1999 AT Radiation Therapy 1/5/2000 Whole-breast: Breast Dx 7/31/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 9/27/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/26/2017 Taxol (paclitaxel) Hormonal Therapy Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Targeted Therapy Herceptin (trastuzumab)
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Nov 3, 2017 11:02AM - edited Nov 3, 2017 11:14AM by Cherry-sw

HapB, I do not, I really, especially in this very moment being complete paranoid, I do not want any of these treatments, I thought Taxol was being nice to me and so thought my doctors. Now I wonder if I should call them and ask to do my blood work before the last infusion, I cannot go upstairs without holding the railing in my home, and we are talking about eight stairs. This week I just crushed. I am eating fried chicken liver, red meat and something very peculiar, a Swedish thing, called blood pudding, it is like a meal but tastes sweet and is served as so many things with lingonberry jam. It is like craving I suspect my hemoglobine is very low right now. Why I am contemplating additional treatment? Because even this bc professor who called me this week agrees with me that I am being borderline for more treatment. He said that for the size of this tumor they use weekly Taxol, a new regimen, based on Dana Farber study that has proven good results so far. But this study is new and they have not been using this regimen for a longer period of time. Due to the presence of LVI we can reconsider adding anthracycline but it is up to me. If he would called me and said: you shouldn't worry, we are over-treating you already, weekly Taxol is not less effective than any other regimen, then I would have called it quits. But he did not. I asked him about different regimens and he said that we cannot compare Taxol, TC and AC just like that because there are no study, a real randomized that can compare efficacy. But there is a study, he mentioned the name, that compared AC to TC (Taxotere+Carboplatin), AC shown to be more effective. There is no study that compares Taxol to AC, and only weekly Taxol is not given for larger tumors that has spread to the nodes because it it simply not enough, or at least they do not know at the moment because there is no study on that. Another oncologist told me that it may be the other way around, that they over-treat smaller tumors with Taxol, they just do not know. And it is not enough for me because I need to act now.I just thought that I go with one infusion EC and see how I will tolerate it, if it will be really bad I will stop.

About how I looked before, I cannot even start on this, I feel like it has been in another life. The stairs, I never walked them, I used to fly them in a couple of steps. I was contemplating whether or not I should put botox in the wrinkle between my eyebrows and decided against it, thinking, no, I want to be natural and age with grace. So much for that. I am completely unrecognizable and the worst part today was my youngest's look at her face when she saw me crying in the kitchen when I told my mom how I felt. She looked worried and upset and did not know what to do and I hate the fact that she is going through this when she is just 11.

Dx 6/28/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 7/18/2017 Lumpectomy: Left Chemotherapy 8/21/2017 Taxol (paclitaxel) Targeted Therapy 8/21/2017 Herceptin (trastuzumab) Chemotherapy 11/27/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin) Hormonal Therapy 1/30/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 3, 2017 12:48PM Cherry-sw wrote:

I hear what you are saying, Hap, and I am very sorry about your childhood. Unfortunately it is nothing one can be trained for, I am doing the best I can but I am far from handling it well. We are trying to keep her busy, she is at her friend house right now, and I am trying to cope with the fact that life does not always turn out as expected, or should have been, or used to

Dx 6/28/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 7/18/2017 Lumpectomy: Left Chemotherapy 8/21/2017 Taxol (paclitaxel) Targeted Therapy 8/21/2017 Herceptin (trastuzumab) Chemotherapy 11/27/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin) Hormonal Therapy 1/30/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 3, 2017 01:22PM ElaineTherese wrote:

Hap and Cherry,

I talk to my daughter about cancer. It's just a disease. While I was undergoing treatment, it was no fun for her. But, she's OK now. Kids don't need to be burdened by adult problems, but they do need to develop resilience. We can't shield our kids from all of life's challenges, but we can help them get through the challenges.

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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Nov 3, 2017 01:26PM Cherry-sw wrote:

KimCee, Herceptin will be every third week, we get it subcutaneously in Sweden, it is over in 10 min but the shut is painful

Dx 6/28/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 7/18/2017 Lumpectomy: Left Chemotherapy 8/21/2017 Taxol (paclitaxel) Targeted Therapy 8/21/2017 Herceptin (trastuzumab) Chemotherapy 11/27/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin) Hormonal Therapy 1/30/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 3, 2017 01:36PM KimCee wrote:

wow, a shot? I get a drip. I am glad you responded. I can't find anywhere where patients are receiving Taxol weekly and Herceptin every three. Thank you Cherr

Dx 8/10/1999, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 8/24/1999 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/9/1999 AT Radiation Therapy 1/5/2000 Whole-breast: Breast Dx 7/31/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 9/27/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/26/2017 Taxol (paclitaxel) Hormonal Therapy Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Targeted Therapy Herceptin (trastuzumab)
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Nov 3, 2017 01:52PM SpecialK wrote:

kim - you may be getting 21-day dose so that they don't have to dose calculate when you finish the Taxol portion, and move to H only infusions. At the end of the chemo portion, when the side effects are cumulative from that, they may not have wanted to triple your dose from weekly Herceptin in an effort to minimize problems for you. Starting you on the 21-day schedule from the beginning might make it easier for the long run, and you will already be adjusted to the larger dose.

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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Nov 3, 2017 02:01PM KimCee wrote:

Thank you SpecialK, I want to be sharp when I go back to work in 3 weeks. That may be part of the reason my MO did it this way. To minimize effects. I feel better now

Dx 8/10/1999, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 8/24/1999 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/9/1999 AT Radiation Therapy 1/5/2000 Whole-breast: Breast Dx 7/31/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 9/27/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/26/2017 Taxol (paclitaxel) Hormonal Therapy Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Targeted Therapy Herceptin (trastuzumab)
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Nov 3, 2017 02:06PM SpecialK wrote:

kim - if when you start on the H only ask them to infuse slowly, preferably at least 60 minutes, 90 is even better. Some who have faster infusions (dosing instructions from the manufacturer allow infusion is 30 minutes) experience some bone/joint/muscle pain. This happened to me - I had 90 minute Herceptin infusions during chemo and never had any issues with pain, had the first H only in 30 mins and I had a lot of pain. Slowed it down the next time to 90 mins, no more problems - yay! Got all the rest in 90 mins, never had pain.

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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Nov 3, 2017 02:14PM - edited Nov 3, 2017 04:00PM by Lita19901

This Post was deleted by Lita19901.
Dx 6/24/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 7/21/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Nov 3, 2017 02:21PM Cherry-sw wrote:

ElaineTherese, you are right.

Dx 6/28/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 7/18/2017 Lumpectomy: Left Chemotherapy 8/21/2017 Taxol (paclitaxel) Targeted Therapy 8/21/2017 Herceptin (trastuzumab) Chemotherapy 11/27/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin) Hormonal Therapy 1/30/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 3, 2017 02:50PM KimCee wrote:

I will definitely be on top of that SpecialK, I do not want the bone/joint pain. Last go round 18 years ago I had 10 neurogen shots after each AT. The bone pain/burn for two days was awful. Thank goodness back then I didn't work, times change. So glad you were aware and knew to slow the infusion

Dx 8/10/1999, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 8/24/1999 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/9/1999 AT Radiation Therapy 1/5/2000 Whole-breast: Breast Dx 7/31/2017, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 9/27/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/26/2017 Taxol (paclitaxel) Hormonal Therapy Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Targeted Therapy Herceptin (trastuzumab)
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Nov 3, 2017 03:09PM Cherry-sw wrote:

lita19901, we tend to go the opposite, I crumble a lot, not in front of her but she can hear and understand. The optimal behaviour would be to stay positive and act normal, she knows that I am in treatment, but I am not positive, at least I do not have any breakdowns in front of her but I am sure she still knows that I am sad and scared most of the time. She does not know how to handle it. We are trying to keep her busy. Cherry

Dx 6/28/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 7/18/2017 Lumpectomy: Left Chemotherapy 8/21/2017 Taxol (paclitaxel) Targeted Therapy 8/21/2017 Herceptin (trastuzumab) Chemotherapy 11/27/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin) Hormonal Therapy 1/30/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 4, 2017 09:29PM rljes wrote:

Hi HapB - oh please don't 'hold your tongue' when your Doctor says its not a SE!  Say it Loud and Proud - Make them hear you!  (I watch to much Grey's Anatomy)  I told my Rhuematologist that taking Methatrexate made my skin crawl and legs cramp - she said nobody has ever complained of SE with this drug - Well, now there is me.  Since my MO thinks he's God - I plan to tell him personally each and every SE I have with gory details. 
   I have a weird growth on my elbow - somewhat like a dbl elbow - Like a bone the size of my fingernail floating around - doesn't hurt - but strange.  Not sure who to go to about this.  As usual my BS said "not this department" (I was told to report anything different in my left arm - since nodes were removed) apparently they didn't mean it. 
  Special K - good to know about the amount of time for Herceptin. 

Finished Chemo March 2018, No reconstruction "Going Flat" Dx 6/26/2017, IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+ Dx 8/22/2017, 1/7 nodes, HER2+ Surgery 8/22/2017 Mastectomy: Left, Right Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy
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Nov 5, 2017 01:47AM GingerChi wrote:

Hi everyone...just wanted to share my experience so far with Nerlynx (neratinib). I'm on day 9, so its early on, but the SE have been minimal. I've had a few episodes of diarrhea on days 3 and 9 (today I'm partially blaming the salad I had at Olive Garden. lol ) both days have been managed with Imodium. I'm not taking Imodium daily, am taking it as needed. Day 1 I had the medicine head feeling, but haven't had it since. I've had zero nausea, and have not lost my appetite. A couple of days I've been a little tired, but have been able to work and spent most of today shopping! I'll have labs done next week, am anxiously awaiting them, hoping liver enzymes are ok.

My MO had 6 patients in an early clinical trial, and they all completed it. She didn't hesitate to put me on it when I asked her. My insurance wouldn't approve Perjeta, so I wanted to try this. It was a tough decision.....I do trust my MO, and hope and pray I've made the right choice. I'll update once I get lab results.

Dx 2/6/2015, IDC, 3cm, Stage IIA, Grade 3, ER+/PR+, HER2+ Dx 2/11/2015, DCIS Surgery 2/23/2015 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 6/14/2015 AC + T (Taxol) Targeted Therapy 7/13/2015 Herceptin (trastuzumab) Hormonal Therapy 10/12/2015 Arimidex (anastrozole)
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Nov 5, 2017 03:06AM - edited Nov 5, 2017 03:27AM by SajeScents

I am crazy confused right now. I was reading in another cancer forum (Canadian) that cancer likes calcium to grow, and consequently we should avoid ingesting too much calcium. However, I have osteopenia already, am on AI daily, had one injection of Prolia (rx'd twice per year) and was advised by my MO to take Vit D3 and increase my intake of calcium and calcium-rich foods. It looks like a no-win situation if it is true that calcium grows cancer, or is that just a myth? I am taking Vitamin K2 supposedly to help distribute the calcium to bone and not to soft tissue. I also like Gouda and Brie cheese for the same reason.

What's the real truth on calcium ingestion and cancer growth??? Thanks in advance.

Dx Dec 2016 - ILC (R); IDC (L); bilateral lumpectomies, Stage IIB ER/PR+, HER2+ 1/8 nodes, Chemo DCH; rads x16 (L) and x25 (R); now on anastrozole daily & Prolia inj q6 months
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Nov 5, 2017 01:33PM deni1661 wrote:

Suburbs, yay no blood clot. That's a positive. I sure hope the new round of antibiotics do the trick and heal your wound finally. People don't realize that cancer is ongoing not a one and done deal. That's why this group is so very important to me. Hang in there and feel better soon.

specialk - your trip sounds wonderful. glad you had a good time.

cherrysw - I am so very sorry for your struggles. I pray you find peace and pass that along to your daughter. I remember seeing my mother cry when I was a child and I felt so helpless. My mom was the strength of our family and when she cried that caused me anxiety. I'm not saying you should hide your feelings as I believe we must be honest with kids and communicate age appropriate information. Balance is key and maybe therapy for both of you can help.

KimCee - take it easy when you go back to work. Your health is more important so don't over do it and get plenty of rest. I'm one to talk with my hectic schedule these days but I balance the crazy work hours by skipping social activities so I can rest. My husband doesn't like that so much but then I tell him I can retire now instead of next March. That usually shuts him up lol. I am learning to make myself a priority for the first time in my life. Not easy for women but so very important in ridding our bodies of cancer.

Hapb - my MO is very interested in any SE's I may have, even those I might considerate insignificant. I agree with rljess, don't bite your tongue and let your MO know everything. We know our bodies best so any new symptom that comes up has to be related to the meds going into our bodies.

Sajescents, I have not heard about calcium causing cancer. I limit dairy but my calcium number is always in the desired range according to my MO. It is confusing and frustrating to know which facts are accurate because there is so much information floating around. I always rely on my MO to steer me in the right direction.



Dx 7/25/2016, IDC, Left, 2cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Hormonal Therapy 9/6/2016 Arimidex (anastrozole) Targeted Therapy 9/6/2016 Herceptin (trastuzumab) Targeted Therapy 9/6/2016 Perjeta (pertuzumab) Surgery 4/27/2017 Lymph node removal: Sentinel; Mastectomy: Left Surgery 5/9/2017 Reconstruction (left): Stacked DIEP flap Hormonal Therapy 5/17/2017 Femara (letrozole) Surgery 11/29/2017 Reconstruction (left): Fat grafting, Nipple reconstruction
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Nov 5, 2017 01:49PM emily_mh wrote:

sorry to be off topic here- It seems like most people who are triple positive have gotten a mastectomy instead of a lumpectomy- I could be wrong about this, it just seems that way when I read people's stats. I realize not everyone may have a choice. My MO thinks I should have a lumpectomy but since I'm triple pos, grade 3 have dense breasts, tumor 4cm, I wonder why she doesn't think I should have a mastectomy? Especially if it's true that triple pos cancer comes back more often than other types. I guess I'm just wondering if triple positive should mean you should get a mastectomy because of its aggressiveness

Dx 6/23/2017, Left, 4cm, Stage IIB, ER+/PR+, HER2+ Chemotherapy TCHP
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Nov 5, 2017 02:09PM ElaineTherese wrote:

Hi emily mh!

I had a triple positive tumor that was Grade 3 and 5 cm+ and had one compromised node. After neoadjuvant chemo, the active cancer in my breast and my node was gone. I had also tested negative for BRCA. Hence, by the time I got surgery, I opted for a lumpectomy, not a mastectomy.

If chemo had been less effective or I was BRCA+, I might have opted for a mastectomy. But, there wasn't anything to take out, really, by the time I reached surgery. The surgeon just removed a golf-ball sized lump of tissue from around my surgical marker.

I should note that I really didn't want to do reconstruction or "go flat." I have two special needs sons, and wanted to avoid multiple surgeries (which reconstruction sometimes requires). Also, I like my breasts and was happy that I could do breast-conserving surgery.

If the cancer comes back, so be it. You can always take more off later; once your breasts are gone, they are gone.

There are many BC patients here who took a different path. Maybe, they had multi-focal tumors or just want the peace of mind of a bilateral mastectomy. Some like the idea of no more mammos; some (like Vicky!) were happy to get new boobs out of this awful diagnosis. But, I just wanted you to know that some of us did opt for lumpies! Best wishes!

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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