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Topic: 19 years at Stage 4 MBC de novo!

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Dec 12, 2020 02:37PM

Denny123 wrote:

Well, I did it! So far, so (almost) good. Today is the beginning of my 19th year after being diagnosed with Stage 4 MBC de novo. I started out with metastasis to my liver (now clear), then about 11 years ago, I had metastasis to 2 chest nodes (also cleared). Now it seems that I have metastasis to my ribs. I am still hanging in here but 19 years of chemo is a very longggg time. Besides being afraid of death by cancer, I am also haunted by Covid19. As I hibernate as much as possible....

I am currently on Xeloda and Herceptin, but that may change after my April CT scan.

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/19/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/9/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/4/2011 Faslodex (fulvestrant) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy
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Dec 12, 2020 02:49PM 50sgirl wrote:

Denny, WOOHOO!!!! That is such wonderful news to share with everyone here. I hope you post again next year, and the next, and the next, etc. I am doing the happy dance for you and for the hope you are giving to so many others.

Hugs and prayers from, Lynne


Dx 6/5/2015, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/9/2015 Arimidex (anastrozole) Dx 8/9/2016, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Hormonal Therapy 8/10/2016 Faslodex (fulvestrant) Targeted Therapy 8/30/2016 Ibrance (palbociclib) Hormonal Therapy 7/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/2/2018 Xeloda (capecitabine) Chemotherapy 2/10/2019 Taxol (paclitaxel) Hormonal Therapy 11/12/2019 Aromasin (exemestane) Targeted Therapy 11/12/2019 Afinitor (everolimus) Hormonal Therapy 12/26/2019 Femara (letrozole) Chemotherapy 3/8/2020 Adriamycin (doxorubicin) Targeted Therapy 2/6/2021 Verzenio
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Dec 12, 2020 02:53PM Chicagoan wrote:

Way to go Denny! Thanks for checking in on this anniversary! Nineteen years-amazing! Your story helps me to be less afraid of progression. Before this I couldn't even imagine living 19 years with MBC-maybe 10 years at best. Hope your hibernation can end soon with the Covid vaccine and that your cancer goes back to sleep (or better yet, disappears). Let's keep hoping for a cure to cancer.

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/26/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/26/2016 Ibrance (palbociclib)
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Dec 12, 2020 03:43PM finallyoverit wrote:

@Demny ~ What amazing news! 19 years is incredible. Keep doing you! I hope to follow in your footsteps. Thanks for posting. It gives a lot of us great hope.

Dx 10/2011, IDC, Stage IIA, 0/4 nodes, ER+/PR+, HER2- Dx 5/2017, Stage IV, metastasized to bone
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Dec 12, 2020 03:44PM Bestbird wrote:

Congratulations on 19 years, and wishing you many, many more!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Dec 12, 2020 05:01PM Olma61 wrote:

Great to hear it, Denny! A dozen virtual roses 🌹 and keep on going

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/29/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/29/2019 External: Bone
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Dec 12, 2020 05:49PM - edited Dec 12, 2020 06:01PM by Snow-drop

Denny, Congratulations on 19 years, it is really impressive and wishing you many many more years🍾 🤗

Edited to add: Would you mind if you share your inspirational story in DeNovo stage 4 thread as well? https://community.breastcancer.org/forum/8/topics/876918?page=14#idx_414

De Novo stage IV Dx 9/2019, IDC, Left, 4cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (IHC) Hormonal Therapy Zoladex (goserelin) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Bone Targeted Therapy Ibrance (palbociclib)
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Dec 12, 2020 06:54PM Denny123 wrote:

Thanks ladies!

Snow-drop!! Thanks for giving me the de novo topic link!! I didn't know that there was one!!!!!

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/19/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/9/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/4/2011 Faslodex (fulvestrant) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy
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Dec 12, 2020 08:23PM KBL wrote:

Snow-drop, I thanked you in the de novo thread, but I also wanted to thank you here for pointing Denny to our thread.

I’m in awe of you, Denny. I hope you get much more time to celebrate the right way, after COVID is over.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Dec 14, 2020 02:39AM Meja wrote:

Dear Denny,

Congratulations, - thank you for sharing your story. May you celebrate many more years.

Meja
Dx 12/10/2015, IDC, Right, 3cm, Stage IIB, Grade 1, 2/15 nodes, ER+, HER2+ Dx 1/11/2016, Paget's, Right, <1cm, Stage IIB, Grade 1, 2/15 nodes, ER-, HER2+ Surgery 1/11/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Dx 4/6/2018, Stage IV, metastasized to bone, ER+, HER2+ Targeted Therapy 10/30/2018 Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy 8/7/2019 Herceptin (trastuzumab) Chemotherapy 9/19/2019 Xeloda (capecitabine) Hormonal Therapy 5/27/2020 Faslodex (fulvestrant) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Navelbine (vinorelbine) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Whole-breast: Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Dec 14, 2020 07:08PM aprilgirl1 wrote:

Congratulations and thank you for sharing! It gives us all hope:) It is so impressive - may you continue to thrive and celebrate many more years!

recurrence in lymph nodes (superclavicle/mediastinal)"You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass Dx 11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2-
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Dec 14, 2020 09:25PM - edited Dec 14, 2020 09:25PM by JavaJana

🙌🙏 Congratulations and thank you for sharing, your inspirational story gives a lot of hope to many!

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/19/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Chemotherapy 4/8/2020 Taxotere (docetaxel) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Targeted Therapy 4/8/2020 Perjeta (pertuzumab) Hormonal Therapy 8/13/2020 Femara (letrozole)
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Dec 19, 2020 03:45AM Heidihill wrote:

AWESOME!! Denny, you've made my day, my whole Christmas season. Wishing you all the best in treatment outcomes, whatever those treatments may be, for many years to come.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 19, 2020 10:42AM Denny123 wrote:

Thanks everyone! I really appreciate the kind words! May you all have a Blessed Holiday!

Denise

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/19/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/9/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/4/2011 Faslodex (fulvestrant) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy
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Jan 23, 2021 06:43PM ChathamLady wrote:

Thank you for your story and for the inspiration

I was just diagnosed today

Had lumpectomy for stage 1 cancer in December. Had a back ache right after and now the scans show tumors in my spine and pelvis. I was diligent about annual memos didn’t catch what was lurking

starting chemo and radiation next week. No details yet.

I’m devastated as is my family. I don’t know where to start. The list feels endless

Any guidance and getting started and survive the journey would be appreciated from the depths of my heart

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Jan 23, 2021 07:31PM Denny123 wrote:

Chatham...thanks for the kind words. Chemo is so much easier than it was when I started, so try not to be fearful of the possible side effects.

When your onc tells you what kind of chemo you will be on, search on this site for a thread/threads on that particular chemo/chemos. Feel free to ask the participants anything about your treatment since we are all here to help you.

I have learned to eat everything in moderation, within reason. I don't drink alcohol, eat pure soy, or take any alternative "cure" supplements. The supplements will keep your chemo from working. Your onc will prescribe what you need according to your bloodwork.

It is great that you caught the BC early, and I am sorry that it has spread, which puts you into a higher stage. But you can do this! Have faith!

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/19/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/9/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/4/2011 Faslodex (fulvestrant) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy
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Jan 23, 2021 07:37PM exbrnxgrl wrote:

Denny,

I somehow missed this thread. My most heartfelt congratulations on reaching this amazing mark! May you continue to thrive and may more and more follow in your footsteps

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jan 23, 2021 07:45PM Denny123 wrote:

exbrn...thanks! Doing my best to make it to 20 years. Therefore, I am pretty much hibernating.

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/19/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/9/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/4/2011 Faslodex (fulvestrant) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy
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Jan 23, 2021 08:03PM - edited Jan 23, 2021 08:26PM by DivineMrsM

Denny, I, too, somehow missed this thread of yours. May I say thank you for being a continual inspiration to all of us. Congratulations on 19 years and counting! Your story always gives me such great hope.

Btw, I'm just recovering from covid so it is survivable. Dh and and I both had it, no idea where we got it as we've religiously practiced all the guidelines for almost a year, no large gatherings, social distancing, mask wearing and hand washing since the pandemic began, been getting Walmart grocery pickup since summer. My fever lasted 13 days. Dh had no fever andless severe symptoms than me. I will get the vaccine as soon as I'm eligible tho.

Again, congrats on 19 years

found lump 12/22/10~er+/pr+/her2- stage iv bone mets------------- Chemo~lumpectomy~radiation~arimidex------------- March2019/Ibrance-Aromasin---------- Sept2019/Verzenio-Aromasin
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Jan 23, 2021 08:13PM Cure-ious wrote:

Denny, Congratulations on a stunning and just remarkable achievement!! How on earth are you not shellshocked from the cumulative stress of all the scans & exams & scares? I'm figuring that might be what takes me in the end..

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jan 24, 2021 10:31AM Denny123 wrote:

Divine...thanks! Good to know that you survived Covid! I have another Stage 4 friend who survived but gets severe headaches daily.

I get WalMart pick-up and go to chemo. I do watch my 8 years old grandson 2-3 days a week, and do my best to keep a mask on the whole time....but that is so hard.

Cure...thanks! 19 years of scans every 3-4 months gets better with time. The most stressful time is when I have growing mets. I will get the next scan in April to determine if my spot on my left rib is spread. Here we go again. I just have to remember how horrible it was in 2004 when my liver was so filled with tumors that I only had a year to live. NOTHING compares to that stress!!! So everything else pales in comparison.

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/19/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/9/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/4/2011 Faslodex (fulvestrant) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy
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Jan 24, 2021 11:11PM cyathea wrote:

Thanks for sharing this wonderful milestone Denny123. I hope your current chemo keeps those mets from spreading!

It is encouraging to hear that a body can do so well on 19 years of treatment. I’m sure it wasn’t easy. I hope to follow in your footsteps

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/8/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/17/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/15/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/20/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Jan 25, 2021 09:13AM Denny123 wrote:

cyathea-thanks so much! I have aches and pains, but so do my non-cancer friends. So I can't really blame them on chemo.

And I am 71, so there is that.....

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/19/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/9/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/4/2011 Faslodex (fulvestrant) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy
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Jan 26, 2021 09:02AM ChathamLady wrote:

Thank you. I am still processing a great deal - as you all did. My radiation starts today - 10 treatments to reduce the pressure on my spine, and the pine and neurological consequences. The steriods have helped - at least now I can stand up and shower :)

Medical Onc. on Thursday - we will see what that brings - my onco type on BC was very low so not sure what that means for MBC

ER+ so here come the hormones and probably some bone strengthening meds.

All I can do is put one foot forward, accept the kindness and support of my friends and family and try to find hope and faith - which again I am assuming sounds very familiar to anyone reading this

All insights from this incredibly strong group are appreciated

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