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Topic: Looking for Her2 Positive survivor stories

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Nov 3, 2014 06:47AM

Lovemyboysandlabs wrote:

Hello, I was dx in February with Her2+ BC. I went through the chemo, the mastectomy and now in the midst of radiation. I will finish that in December and will be on the Herceptin through March. 

I, like so many BC survivors, have a constant fear of metastisis. I can't shake it. I think what I need is to read stories of those with my type of BC that have survived for years with no recurrence. Please share your stories with those of us that are still in treatment or just finishing that are scared.

Thanks!

Dx 2/12/2014, IDC, Stage IIIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 3/3/2014 Herceptin (trastuzumab) Chemotherapy 3/3/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/15/2014 Breast, Lymph nodes
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Oct 10, 2018 10:26AM AngelsGal57 wrote:

Hi my Her2 friends,

I have been very lucky with all of my treatments and insurance until hitting a brick wall yesterday. Because of the extream SI's and pain with Tamoxifen my Dr is switching me to a yet to be determined alternative medication. The next step in treatment has proven to be Aromasin which is an AI. I have found out that Aromasin and Letrozole and Arimedex are not in my insurance formulary. My doctor is going to have to fight them to let me have it...It may be due to expense. I will see what he says next week when I get my Scan results and we discuss what to do at my next infusion treatment.

What has been your experience? Anyone had the same problem and won?

AngelsGal

Dx 3/20/2017, Right, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Chemotherapy 5/9/2017 Taxotere (docetaxel) Surgery 10/4/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 11/14/2017 Whole-breast: Breast Hormonal Therapy 7/5/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 7/25/2018 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy Aromasin (exemestane)
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Oct 13, 2018 06:17AM AliceS wrote:

4 years this week cancer free! Happy, grateful, loving life, and looking forward to many good years ahead!! 

Dx 10/2014, Right, 1cm, Stage IIIA, Grade 3, 4/24 nodes, ER-/PR-, HER2+ (FISH) Dx 10/9/2014, Right, 1cm, Stage IIIA, Grade 3, 4/24 nodes, ER-, HER2+ (FISH) Targeted Therapy 11/12/2014 Herceptin (trastuzumab) Chemotherapy 11/12/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy
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Oct 15, 2018 05:02AM zjrosenthal wrote:

I am also 4 yrs out. Had my 4th clear mamo this past August. Very grateful to be alve. I don’t think as much about recurrence these days and at 75 years young, each day is a gift from God. Love, Jean

Dx 7/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 3/3 nodes, ER+/PR-, HER2+ (FISH) Surgery 8/11/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 9/8/2014 AC Targeted Therapy 11/3/2014 Herceptin (trastuzumab) Targeted Therapy 11/3/2014 Perjeta (pertuzumab) Chemotherapy 11/3/2014 Taxol (paclitaxel) Hormonal Therapy 1/27/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/19/2015 Lymph node removal: Left, Underarm/Axillary Radiation Therapy 3/16/2015 Breast, Lymph nodes Dx IDC, 3cm, Stage IIB, Grade 3, 3/3 nodes, ER+/PR-, HER2+
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Oct 15, 2018 05:53AM jo6359 wrote:

zjrosenthal- congratulations. Do you still experience anxiety waiting for results?

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 16, 2018 02:58AM zjrosenthal wrote:

Jo, I have some anxiety but nothing like years ago. Just mild concern rather than panic. Love, Jean

Dx 7/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 3/3 nodes, ER+/PR-, HER2+ (FISH) Surgery 8/11/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 9/8/2014 AC Targeted Therapy 11/3/2014 Herceptin (trastuzumab) Targeted Therapy 11/3/2014 Perjeta (pertuzumab) Chemotherapy 11/3/2014 Taxol (paclitaxel) Hormonal Therapy 1/27/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/19/2015 Lymph node removal: Left, Underarm/Axillary Radiation Therapy 3/16/2015 Breast, Lymph nodes Dx IDC, 3cm, Stage IIB, Grade 3, 3/3 nodes, ER+/PR-, HER2+
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Oct 16, 2018 05:34PM jo6359 wrote:

jean- mild anxiety beats the hell out of panic. Thursday I will have my first cervical screening since being diagnosed with breast cancer in December. I'm not anxious YET that could change very quickly.

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 19, 2018 09:52AM AngelsGal57 wrote:

RESULTS ARE IN! the 28 lung nodules of 10 - 14 cm are either greatly reduced to 1.0mm or gone completely and the two Lymph modes

that were involved are now RESOLVED and cancer free. There is no cancer anywhere else and the treatment is working. I am off the AI's for 3 weeks

to see if the Kadcyla is causing the cramping in my legs. I am extending the treatment 2 more so will be done with that Dec 20th. I am so blessed and

thankful for everyone's prayers and concern. God is good!

Dx 3/20/2017, Right, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Chemotherapy 5/9/2017 Taxotere (docetaxel) Surgery 10/4/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 11/14/2017 Whole-breast: Breast Hormonal Therapy 7/5/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 7/25/2018 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy Aromasin (exemestane)
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Oct 19, 2018 05:29PM jo6359 wrote:

Angelsgal- thanks for sharing your wonderful news. I am so happy for you. I'm hoping that you're cramping issue will be resolved soon. Celebrate

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 20, 2018 06:16AM Pipandor wrote:

That's great news Angelsgal! If Kadcycla is like Herceptin, I'll bet the cramping will decrease when you come off it.

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/5/2016 Lumpectomy: Left Chemotherapy 3/11/2016 Taxol (paclitaxel) Targeted Therapy 3/11/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Oct 21, 2018 12:21PM stlcardsfan wrote:

No anxiety as all I do is go in and see the clinical nurse. There are no tests being done, and my bloodworm is checked as part of my yearly physical. I always ask if there is anything else I should be doing, and the answer is always the same, go out an live your life. Unless i have a specific pain for more than 2 weeks, I am all good. I asked early on about scans, etc, and they said only if you have symptoms.

TCH, Herceptin, BMX, Exchange all Done! Dx 12/4/2009, IDC, Left, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Oct 22, 2018 02:12PM moodyblues wrote:

Grace5, 10.5 years....Yay! Thanks for sharing with us your success.

SpecialK, another year! Thanks for always being an inspiration to us triple positives and of course all other survivors.

Dx 2/2017, IDC, Left, 2cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 3/31/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 22, 2018 02:14PM moodyblues wrote:

stlcardsfan. Thanks for stopping by and offering us hope, 9 years is awesome!

Dx 2/2017, IDC, Left, 2cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 3/31/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 22, 2018 02:22PM moodyblues wrote:

AliceS. Thanks for sharing.... 4 years cancer free! zjrosenthal, thank you as well for stopping by and sharing with us. 4 years out and counting! 75 years young too, wishing you many more.
Dx 2/2017, IDC, Left, 2cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 3/31/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 26, 2018 08:21AM - edited Oct 26, 2018 08:41AM by Tisajw

I'm a very private person but I enjoy reading the survivor stories.I know there's hope for me in this fight.I was diagnosed in February 2018 with stage 2b BC HER2+ and thought this was my death sentence and very scared.I had 6 TCHP treatments,Lumpectomy and radiation.Now I'm finishing the Herceptin and Perjecta 6 to go.My pathology report shows clear margins.So I'm praying for continued success and thankful for this group.

Dx 2/7/2018, IDC, Left, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER-/PR-, HER2+ Chemotherapy 3/6/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 7/18/2018 Perjeta (pertuzumab) Radiation Therapy 8/7/2018
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Oct 26, 2018 09:28AM Moderators wrote:

Dear Tisajw,

We welcome you to the BCO community. We are sorry for your diagnosis and subsequent treatment but so glad that you reached out to share your own story with our members. We hope that you will stay active and connected here and enjoy the support that is so readily shared in this community. Let us know if you need any help navigating your way around. The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Oct 26, 2018 01:05PM jo6359 wrote:

tisajw- I will finish herceptin and perjeta in February also. So far no side effects. The support on these threads are wonderful.

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 30, 2018 08:06PM RobynS4 wrote:

I was diagnosed with stage 2 IDC...1.4 centimeters.. Er and Pr negative and her2 + per the biopsy. Had a mastectomy 3 weeks ago. The pathology report came back as stage 1 instead and my Dr is having the subtypes re-tested. Nodes and margins are negative for cancer. Initially my MO said I would need TCHP therapy (once every 3 weeks for 6 times) with herceptin continued for a year. Now that I am stage 1, I have read that 4 cycles of tchp is just as effective as 6. Has anyone on here had just the 4 cycles or just herceptin with perjeta minus the chemo?


Dx 8/1/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH) Dx 8/1/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH)
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Oct 31, 2018 06:07AM Pipandor wrote:

Hi Robyn. My diagnosis was similar to yours. I haven't heard of a 4 cycle TCHP regimen but 12 weekly cycles of taxol and herceptin followed by herceptin every 3 weeks to complete a year is becoming the standard of treatment for early stage HER2.As chemo goes, it is "lighter" than the TCHP regimen and is becoming the standard of care (https://www.onclive.com/onclive-tv/dr-burstein-on-...).

You can read about it here on breastcancer.org under the topic "Anyone treated per APT trial led by Dana Farber". If you're concerned about peripheral neuropathy, I've posted information there about cryotherapy. There were a few bumps in the road during treatment, but I'm 3 years out from diagnosis and doing fine.

Take care.

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/5/2016 Lumpectomy: Left Chemotherapy 3/11/2016 Taxol (paclitaxel) Targeted Therapy 3/11/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Oct 31, 2018 11:50AM RobynS4 wrote:

Hi Pipandor...thanks so much for your input! Congratulations on your 3 years! It's great to see so many success stories! My MO recommended tchp based on 2nd stage cancer but now that its changed maybe he will recommend TH instead. Did you also get Perjeta? I know everyone reacts differently with chemo but, would you mind letting me know how you tolerated this therapy, other than the neuropathy, as far as how you felt over the 12 weeks (any sickness, etc) and were you able to work? (((Hugs)))

Dx 8/1/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH) Dx 8/1/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH)
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Oct 31, 2018 04:20PM Pipandor wrote:

Hi Robyn. No, I did not receive Perjeta. It wasn't offered then and I'm not sure it would be offered to a stage 1 even now, here in Canada. Luckily, I was on sick leave during the chemo. I was 53 at the time and very able to take care of myself, walked every day, did some work from home. The steroids you get just before the Taxol can keep you up all night on treatment day, so you may want to schedule chemo on Friday. Everyone is different, but I generally felt sluggish on Monday (3rd day after chemo) but capable of functioning. Walking, eating well and drinking a lot of water helped.

The last four infusions, I wasn't quite making it back up the hill during the week, and felt more tired. About a month after the 12 weeks of chemo, I had very sore feet for a couple of months, so it would have been tough to stand all day. Four months before the end of the Herceptin infusions, I developed a very bad itch on one arm. It responded to nothing but ice, so I was tired at work from lack of sleep. Fortunately, that ended a few weeks after the last Herceptin infusion.

Another thing I wish I had known is that people undergoing cancer treatment are more prone to blood clots. A clot formed around my catheter in a deep subclavicular vein. After 4 infusions, my port was removed, and as a precaution, I had to inject myself with Fragmin for 6 months. For many though, the benefits of a port outweigh the risk, especially if it will be used for weekly blood draws, but it's something to ask your doctor about.

I met several ladies who kept working through chemo. I was back in the office not long after radiation. Some employers will make accommodations. It depends on your general health, how you respond to treatment and your support system.

Hope that helps. Onward and forward🤗

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/5/2016 Lumpectomy: Left Chemotherapy 3/11/2016 Taxol (paclitaxel) Targeted Therapy 3/11/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Nov 1, 2018 12:28PM Lilyn wrote:

Hi 10 years out Her2 . diagnosed 2008 bilateral breast cancer 3 tumours one Her2 positive. did chemo and one year Herceptin love to all

Dx 8/15/2008, IDC, <1cm, Stage I, Grade 2, ER+/PR-, HER2+
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Nov 1, 2018 02:19PM jo6359 wrote:

lilyn- it's always nice to hear long-term survivors checking in. Thanks a lot

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 1, 2018 04:18PM RobynS4 wrote:

hi Pipandor,

Your feedback is so greatly appreciated and I cant than you enough! I am so happy that the treatments are behind you! I have a lot to think about and ready with my ammunition for the MO. There was a 3 year study here in the US for women 70-80 years old with her2+. I'm 63 years old.They all didnt want chemo so the study was giving them just herceptin for a year. Turned out a 89% survival at those 3 years which I think was great! It's called the RESPECT trial with Dr. Denise Yardley. Check it out on line. I've spoken with my MO before I had the surgery and asked him about just giving me herceptin and perjeta without chemo. He said he would do so if thats my choice but of course he would prefer chemo also. Here's my thoughts on that...I have stage 1, nodes negative, margins negative. If they do chemo as a precaution...just in case a microscopic cell may have escaped....I would think the pathology report would have found cells in other areas of my breast which there weren't any. It all makes me wonder if chemo is always the answer or if the long term survival rates could very well be because no cells escaped. It's all so mind boggling! Granted, her2 has a higher risk of recurrance but that's the big if. Again, many thanks Pipandor. I wish you all the very best!

Dx 8/1/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH) Dx 8/1/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH)
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Nov 1, 2018 06:44PM - edited Nov 2, 2018 05:30AM by Pipandor

Thanks Robyn. It was great to hear about the RESPECT study. It seems that you can go either way since outcomes were good in both the chemo/Herceptin and the Herceptin only arms of the study. Whatever you choose, all the best.

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/5/2016 Lumpectomy: Left Chemotherapy 3/11/2016 Taxol (paclitaxel) Targeted Therapy 3/11/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Nov 1, 2018 08:34PM jo6359 wrote:

Robyn-I worked and exercised throughout chemo. For myself the worst side effect from chemo was the Horrible's metallic taste of food. The First 48 hours after chemo the steroids left me hyper active. The things I wasn't prepared for was blisters that would break out on my hands and feet. The disappeared within a couple of days but they were unsightly. The occasional disconnect of mind and body was disconcerting to say the least. You will do great. The support on these threads prepared me for the unexpected.

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 2, 2018 12:18AM 3girls wrote:

7 years! Hardly think about it anymore!!

Dx 9/6/2011, IDC, 1cm, Stage IIA, Grade 2, 1/1 nodes, ER+/PR+, HER2+ Surgery 10/7/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 12/4/2011 AC + T (Taxol) Targeted Therapy 2/4/2012 Herceptin (trastuzumab) Radiation Therapy 5/20/2012
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Nov 2, 2018 05:32AM Pipandor wrote:

That's great news 3girls! Thanks for coming back to share.

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/5/2016 Lumpectomy: Left Chemotherapy 3/11/2016 Taxol (paclitaxel) Targeted Therapy 3/11/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Nov 2, 2018 09:15AM RobynS4 wrote:

Jo6359....thanks so much! When I hear how well others do on chemo it certainly sets my mind more at ease! I wish you well with years and years of great health.

Dx 8/1/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH) Dx 8/1/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (FISH)
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Nov 2, 2018 05:06PM jo6359 wrote:

robyn- I received the results today for my echo. So far no damage to my heart from the herceptin. Hallelujah. Chemo won't be fun but it's doable. Waiting is the worst part

Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/15/2018 Perjeta (pertuzumab) Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Chemotherapy 2/15/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 3, 2018 11:36AM moonchild64 wrote:

Hi All,

10 year HER2 positive survivor checking in here! Happy

So very grateful Herceptin was available to early stage diagnoses in 2008 and encouraged to see even more treatments available ten years later.

Stay strong, hopeful and vigilant my fellow bc sisters Heart

Michelle

Dx 5/13/2008, IDC, 1cm, Stage IB, Grade 3, 0/4 nodes, ER+/PR+, HER2+

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