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Topic: A place to talk death and dying issues

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: Jun 7, 2011 03:43PM

ma111 wrote:

This post is for those of us with concerns and issues about death and dying to talk about them.

IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE. We do not need people telling us to live life or to hear that other people have lived a long time, we have concerns. We are living life and would like for our diagnosis/prognosis to be changed. However, we are stuck with it and not in denial.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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Jan 15, 2021 02:28AM SeeQ wrote:

kjones - thank you for taking the time - and emotional energy - to share your experience.

I'm so glad the nurses at your cancer center were there to give you hugs and a 'safe' place to let go of your emotions. You have been being so strong for your parents b it sounds like you needed a time to give in. Again, my sympathy for the loss of your mother.

De Novo Stage IV; numerous mets in liver; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Jan 15, 2021 02:32AM - edited Jan 15, 2021 02:33AM by SeeQ

This Post was deleted by SeeQ.
De Novo Stage IV; numerous mets in liver; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Jan 15, 2021 08:13AM KBL wrote:

kjones, beautifully written explanation.

I lost my mom in June of 2009. She also said she was ready to “go home.” She was in a nursing home. We knew what she meant. The night before she passed, my husband and I visited her. I didn’t realize the signs, but she wouldn’t acknowledge my husband. I was a little upset. When they called the next day to tell us she passed, I then put two and two together. She wasn’t really with us.

I also think that at the time of death, some wait for others to leave because they don’t want them to see it.

I really appreciate your explanation. I have decided to try and die at home when my time comes, especially if loved ones can’t visit in a hospital. That would be so cruel. After I’m gone, my husband plans on selling this house and moving to our other house. I don’t know if I could do it if he was going to continue to live here. I think it would haunt him.

I am so sorry for your loss. I had one parent die in a tragic accident and one die for medical reasons. Whether it’s quick or slow, losing them hurts really bad.

I’m glad you got to talk to someone and get those hugs. I hope you can have good memories with your mom flood in as the weeks and months go on.

I imagine you will focus more on your dad than yourself, as I see how much you cared for your mom. It’s heartbreaking to see what the spouse goes through. Your mom was so lucky to have you.

Hugs.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib)
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Jan 15, 2021 08:47AM 50sgirl wrote:

kjones, Thank you so much for your thoughtful, informative posts. I have have learned a lot from your messages. I am glad that you were able to receive some comfort at the cancer center. You have been through such an emotional experience. I wish those of us here could give you a group hug. I will probably have questions for you, but they can wait.

I have gone back and forth about whether to die at home or not. You have confirmed what I had heard about hospice. Although they provide many valuable services, home hospice is not a full-time, all-encompassing service. I realize that it would be impossible for my DH to handle my dying by himself. The alternatives, of course, are limited. I would be interested in a hospice facility, but the cost could be prohibitive if I was there for a long time. Insurance doesn’t cover that cost, only home hospice care. More to think about.

Please give yourself time to grieve. You have been through so much. Think about the good times you shared with your mom. Remember how much you enjoyed each other’s company, how she laughed with you, the serious and light-hearted conversations you shared.

Hugs and prayers from, Lynne


Dx 6/5/2015, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/10/2015 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 8/31/2016 Ibrance (palbociclib) Hormonal Therapy 7/3/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/2/2018 Xeloda (capecitabine) Chemotherapy 2/11/2019 Taxol (paclitaxel) Hormonal Therapy 11/12/2019 Aromasin (exemestane) Targeted Therapy 11/13/2019 Afinitor (everolimus) Hormonal Therapy 12/27/2019 Femara (letrozole) Chemotherapy 3/8/2020 Adriamycin (doxorubicin) Targeted Therapy 2/6/2021 Verzenio
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Jan 15, 2021 08:47AM Micmel wrote:

I watched my father pass away. I saw him actively dying. The body just shuts down. I needed to see that process for myself. It was hard. And scary like said above. But over all having everyone you love around you is a beautiful thing. It’s just so difficult to watch.

Everyone has to dance, they just don’t know what song they will get. Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/20/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/7/2016 Ibrance (palbociclib) Surgery Chemotherapy Chemotherapy Hormonal Therapy Arimidex (anastrozole)
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Jan 15, 2021 11:39AM Sunshine99 wrote:

Thank you, kjones, for taking the time to share. I wish you peace and comfort in the coming days.

Carol

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Jan 23, 2021 11:47AM jaycee49 wrote:

I just posted this to one of those "MBC is not a death sentence but a chronic illness" BS articles on Facebook. I am so sick of that attitude. And I am starting to get this vibe that people are saying, "Hey, what's the problem? You can live for YEARS with MBC." I am taking my stand for myself and all of you who agree.

"MBC is still a death sentence. You may not die in 2-3 years but get 10 instead. Better but still a death sentence. And during that 10 years, you are always wondering when the hammer might fall. All the while taking drugs that make you wish you were dead. Not pleasant. This "chronic illness" BS is so annoying to MBC patients. It just gives big pharma more time to drain your resources and make more $$$ themselves. I wish FB would stop publishing this crap."

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Jan 23, 2021 12:16PM Sunshine99 wrote:

jaycee, I hear you! When you are waiting for the results of scans every three months, and hoping you don't hear, "Sorry, we've no more treatment options", it doesn't feel "just chronic".

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Jan 23, 2021 12:23PM candy-678 wrote:

Jaycee- Agree 100% !!!!!! Chronic illnesses are diabetes, COPD, arthritis. Not Stage 4 Breast Cancer !!!! We are on continuous meds, that make us feel like sh&@, by the way. Scans every few months. Blood work all the time. When will the other shoe drop ie progression. We have cancer already. Yes, I pray for more years, but 10 years if I am lucky. Come on. I am only 50 years old now. Will I be "lucky" to live to 60? And feel sick most of that time? Not a "chronic" illness. Call it what it is.... a death sentence. And not a pretty one at that.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Also using Xgeva injections for bone mets Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Chemotherapy AC Surgery Lymph node removal: Sentinel; Mastectomy: Left
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Jan 23, 2021 01:03PM jaycee49 wrote:

I'm just really sensitive to this topic right now. I am working with people who are trying to get a death with dignity law passed in my state, NM. We only get a crack at it every two years when the state legislature does a "long" session. And the pandemic is not helping. I am composing emails to thank those who agree and convince those who don't that death with dignity is a good idea. I need a brain transplant. Did anyone here work on passing a death with dignity law in their state? I don't know what words will work.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Jan 23, 2021 02:01PM illimae wrote:

Jaycee, I’m sorry, I have no info to offer but I do agree and wish we had it here in Texas. That’s unlikely though, too much deep rooted religion.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 23, 2021 02:39PM jaycee49 wrote:

Mae, we have that problem here, too. Catholic state but last time, it almost passed. If we pass our law, I invite you to drive over and use it when the time comes. Remember, 45 min from El Paso. Park your RV in our driveway.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Jan 23, 2021 02:47PM SandiBeach57 wrote:

Jaycee, do you have parking space for 2 RVs?

2016: MBC with liver mets (DCIS in 2006 & 2007), AC followed by Ibrance, Letrozole. Grade 3 ER+PR-, HER2-. 2020: progression liver mets, Xeloda, Grade 3 ER+PR+HER2-
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Jan 23, 2021 02:59PM - edited Jan 23, 2021 03:01PM by jaycee49

Sandi, not really but you could park on the street. Plus there is an RV park right across the street. We would have to pass the NM law first. I'm getting discouraged because it is getting so close. The sessions start Jan. 29. We've been working so hard but we did last time, too, and it failed. But it was very close. A few changes were made to this current one that I think makes it harder to pass. They made getting the prescription a little easier (48 hour waiting period instead of 15 days, one clinician instead of two). I'm afraid that will turn some legislators against it. I'd like to leave it the way it was to at least get it passed. That's the first step. Several of the states with existing laws are trying to change them now to less stringent rules but at least they have one.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Jan 23, 2021 03:04PM SF-Cakes wrote:

I am the primary caregiver for my husband, who has Stage IV mesothelioma and has been told by his oncologist that he has "months" left (of course, how many months we cannot know). Having just been diagnosed with MBC myself this month makes everything feel surreal, and yet people keep telling me how I will live "for years" and how great that is...it's very difficult to talk with people who don't understand that some cancer is not going to go into remission, and that I do have to update my will and plan things for my own end of life. I will be here for my husband's death, and then I don't know who might be here for me - I really hate the idea of that being my Mum (and dying before her, I'm 51 now) although I know she would be there at the end with me.

We do have the End Of Life Option Act here in California, and my husband has talked with his doctor about this already. I wish this was available for anyone in any state who wanted it, it seems unethical that this isn't an option everywhere.

Dx 6/2020, ILC, Left, 6cm+, Stage IIB, Grade 3, 2/4 nodes, ER+/PR-, HER2- Surgery 7/1/2020 Mastectomy: Left Chemotherapy 8/4/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/3/2020 Chest wall Dx 1/2021, ILC, Left, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 2/10/2021 External: Bone
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Jan 23, 2021 03:48PM SandiBeach57 wrote:

Jaycee..I will be your cheerleader. People with terminal illness need a choice on how they want to live and die.

Your mission and success will be your legacy.

2016: MBC with liver mets (DCIS in 2006 & 2007), AC followed by Ibrance, Letrozole. Grade 3 ER+PR-, HER2-. 2020: progression liver mets, Xeloda, Grade 3 ER+PR+HER2-
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Jan 23, 2021 03:49PM - edited Jan 23, 2021 03:57PM by RhosgobelRabbit

Jaycee, I agree 100%. I was honestly kinda getting the "chronic illness" vibe a bit from the new description to our section here we didn't have any say or input in. The emphasis for MBC now seems to be there's always another drug to move to, another treatment to try and it's not so bad and our lives are full and vibrant...just like those Ibrance commercials depict...drugs drugs drugs.. there has to be more drugs...because our lives now are defined by a life of constant treatment...unless you get sick of it all and the side effects and the dr visits and decide to stop on your own or cancer decides everything and you get no say. It's not chronic. Its anything but chronic. But people believe it is or someone tells them its chronic. I used to use terminal to describe MBC but people dont seem understand terminal because 6 months after a diagnosis you can still see us walking around, so maybe fatal or deadly would be better in describing it. Short or longer survival either way its outcome is still the same we just never know which we fall into. If MBC is ever going to get the attention/funding it needs the way in which it is described and the portrayal of how someone living with it truly feels as they coexist needs to be tweaked.

Concerning DWD, my state is still mulling over it legislatively tho I think they are calling it something else. It's been tied up for at least 5 yrs. As a Christian I have thought about the idea of this alot. Im prolife but I cannot find any reason to deny a terminally ill person relief from suffering or wanting to avoid suffering, even if I wouldn't do DWD myself or have reservations about it. I kinda am more on the side of requesting the morphine counter be turned off and my beloved being able to unlimitedly push the button if he sees I might need aid to push things along if things got bad.

kjones thank you for taking the time to share. It was hard to read in some places as I'm sure it was hard to write, but it was appreciated. Talking about death and then seeing it up close and know one day that will be you has to be eye opening.

Appreciate the open discussion. People just want me to tell them I'm going to live and beat this and its exhausting trying to explain im not.

Mets @ Rads planning. Mets to Pelvis, Femurs, Shoulders, Ribs, T. Spine, L. Spine, Sternum, Sacrum/SI Joints. MyRisk neg. KEAP1 "Courage of the heart is very rare, there's a power when its there" 37yrs old @ IV DX. lifeandirises.home.blog/ Dx 7/30/2018, IDC, Right, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 9/26/2018 AC + T (Taxol) Hormonal Therapy 9/26/2018 Zoladex (goserelin) Dx 4/19/2019, IDC, Right, 3cm, Stage IIB, Grade 2, 5/16 nodes, ER+/PR+, HER2- (IHC) Surgery 4/19/2019 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 5/13/2019 Zoladex (goserelin) Dx 5/17/2019, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- (IHC) Surgery 10/1/2019 Prophylactic ovary removal Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Aromasin (exemestane)
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Jan 23, 2021 03:52PM Sadiesservant wrote:

Jaycee,

Thank you for voicing what many of us feel. While I am fortunate that my cancer is slow growing, it’s not exactly a walk in the park. At four years into this I hurt, am fatigued and constantly deal with the fallout of medications. I’ve had multiple rounds of radiation to beat back the symptoms of bone mets run amok.And while I certainly want to keep going as long as I can, I have to admit to feel tired of the constant poking and prodding, bloodwork, scans, etc. Not to mention the weird symptoms that seem to defy explanation - scans stable thankfully (waiting on CT results currently) but weird pain persists that gets into my head...

Quite frankly nobody should have to deal with this but I also find it challenging to get others to understand what it’s like when you are facing death at a relatively early age (I’m 58). Even my mother doesn’t get it. And, as someone who is single, I too wonder how I will manage when the wheels start to fall off the bus. As she is just shy of 90, it’s likely I will outlive my mother but if not, should she really be saddled with being my caregiver at that age?

So no, it doesn’t feel chronic to me. At least here, in Canada, we have passed death with dignity laws. They need tweaking to remove some of the onerous rules around informed consent which becomes much more problematic once disease progresses but were are still in a relatively good place.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/11/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/29/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/21/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/19/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/10/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine)
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Jan 23, 2021 03:57PM Micmel wrote:

cakes. I’m so very sorry for youfamily. Death is so complicated all the way around. It’s ripples re felt everyday. When you’re living through it. I wish you peace and serenity somehow.

Everyone has to dance, they just don’t know what song they will get. Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/20/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/7/2016 Ibrance (palbociclib) Surgery Chemotherapy Chemotherapy Hormonal Therapy Arimidex (anastrozole)
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Jan 23, 2021 04:41PM illimae wrote:

Thanks Jaycee, I appreciate the offer but hopefully we end up meeting well before that and under much better circumstances, like traveling on vacation.

As for DWD, I was a very odd child and was a fan of Dr. Kavorkian when I was only about 12. I just thought letting the patient decide not to linger and suffer in a hospital was best and never understood the mass objection to something so simple.

And as to chronic vs. terminal, it’s both, kind of. We never know which one we’ll be though and labeling MBC as chronic feels like an excuse to scale back research or lower ones level of empathy. I find it dismissive, like quit complaining, your fine and that impression is just unacceptable. On a personal level with minimal disease in my body, I realize I could do well on Herceptin for years but the addition of brain mets have me living 3-6 months at a time, so my reality is both.


Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 23, 2021 05:13PM exbrnxgrl wrote:

What an interesting discussion. I fully understand that for the vast majority of mbc patients, chronic is a terrible term. What some mbc patients go through just to survive is horrendous. Chronic implies that if you just follow the oncologist's plan carefully then you can just go on living in perpetuity. For a small percentage of us, that is almost true. I say almost because those of us in that position know that even if we follow the mo's plan exactly, progression can and does happen. However, whether we use the term chronic or not some of us are living fairly normally for long periods of time. My casual, totally unscientific observations on bco are that there are more long timers than there were when I was dx'ed over 9 years ago.

I certainly wouldn't want people to look at me and think I was representative of the majority of mbc patients and for those who do, I quickly disabuse them of that notion. But, for some of us long time survival and a good QOL is our reality. I was once told by someone on bco to not talk about how well I was doing so as not to give others the impression that mbc was easy and manageable for most. I don't mean to be insensitive to the condition of others but I don't feel like I need to hide my light either and take great pains to educate others about the reality of mbc and point out what an outlier I am. I have mbc as much as anyone else who has been dx'ed but it's important that people understand that mbc is not a monolith. I have seen tremendous tx improvements in my years. Of course, it's not happening fast enough for enough people and the ugly reality is still there. I just hope that there is room under the mbc umbrella for all varieties of mbc.

My luck, yes I consider it plain dumb luck, has been good but I never know what tomorrow holds. My best to all 💗

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 07:03PM Snow-drop wrote:

Jaycee, a bit late response to “chronic illness” topic, I bet that lame author just tried to downgrade MBC for some reasons, reduce health care benefits or medical retirement? I don’t know, future will tell. They start planting seeds in platforms such Facebook with huge audiences, for this reason and many more I deleted my Facebook account long time ago, and wherever I saw such a b.s I just ignore those.... about DWD, state of California end of life option act is currently in effect since 2016, it follows Oregon model with few modifications, January 2020 former administration tried a lawsuit against it (!) but unsuccessful. Good luck. 🍀

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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Jan 24, 2021 03:34AM SondraF wrote:

Sometimes I wonder if the "chronic condition" line was a way someone found for the health care providers to reframe this and manage in their own minds. I got that line from the breast surgeon who told me I was Stage IV and remember thinking what a pile of bs that was because if a form of cancer had truly, truly been reduced to a level of say, diabetes then that would have been splashed all over the news and the drugmakers stock would have been through the roof. Relative to other cancers (like everyone's favorite scary killer, pancreatic) MBC has more therapies and a potential for longer active medical management, but for patients, who think in terms of chronic like diabetes or RA, its anything but.

I do hope that covid and the cloud of mortality hanging over the general populace on a daily basis will now force some of these discussions about DWD into the open, in a wider range of states. But it is only through the organisational work like Jaycee and others are doing that it goes from a discussion to a debate to a reality. I applaud you for directing your energy that way!

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/28/2019 Ibrance (palbociclib) Hormonal Therapy 11/28/2019 Femara (letrozole), Zoladex (goserelin)
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Jan 24, 2021 12:51PM jaycee49 wrote:

The same article keeps popping up. Here's the idea that gets me.

"In a study conducted by the National Cancer Institute, researchers found that between 1992-1994 and 2005-2012, five-year relative survival among women initially diagnosed with metastatic breast cancer at ages 15-49 years doubled from 18% to 36%."

Woopie! Maybe it's that people are getting so bad at math but 36% surviving five years means that 64% don't.

So it is only de novo, certain ages, certain years, and whatever "relative" means. Your aunt? Cousin?

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Jan 24, 2021 12:59PM illimae wrote:

I agree Jaycee, not much to celebrate here, especially when you consider the age group and the fact that they’re likely to die 20 + years earlier than most. Also, I think the stats have risen mostly due to advancements in HER2+ treatments, so what about the other 80% of MBC patients?

Now, I happen to be in this group (de novo at 41) and I appreciate the improvement but it’s little consolation when I’m so unlikely to enjoy a 50th birthday.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 24, 2021 01:03PM candy-678 wrote:

I am a visual person. So I think of the visual-----

100 women are in a room. All of them have MBC. In 5 years you look into that room again. 36 of those original ladies are left. 64 of them are gone---dead.

Am I one of the 36, or the 64?

Still a "terminal" diagnosis, not "chronic" in my opinion.

I am grateful that the current meds have increased the odds, but it is still sobering when you look in that room.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Also using Xgeva injections for bone mets Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Chemotherapy AC Surgery Lymph node removal: Sentinel; Mastectomy: Left
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Jan 24, 2021 01:15PM jaycee49 wrote:

Here is my new statement. I want to reach as many legislators as possible. So far, I only have the email addresses of the "supporters." They have a list of the "undecideds" but I can't get my hands on it ... yet. They seem to be afraid of what I might say.

"I have stage IV breast cancer. Metastatic. Terminal. I want to live as long as my body can sustain a good quality of life and die on my own terms with a minimum of suffering. I am not telling the bittersweet story of a loved one who died in a state where they did have a choice of how much suffering they had to endure and died a peaceful death. I am not even telling the heart-wrenching story of a loved one who died in our state where they had no choice of how much suffering they had to endure. This is MY story. I am the one dying. I am the expert. And I live in New Mexico where only the heart-wrenching story is allowed to be told.

The fact that I will suffer in the process of living the rest of my life and, in the end, dying is guaranteed. Cancer is a cruel disease. The symptoms of the disease are painful and the symptoms of the treatments are painful as well. Pick your poison. There is a delicate balancing act that must be maintained until the tipping point is reached. That is the point when the pain of the treatments overwhelms the pain of the disease. That is the point when unnecessary suffering must be endured if relief is not offered by medical aid in dying.

It all comes down to suffering. How much? How much suffering am I supposed to endure? And who gets to decide? Do you get to decide or do I get to decide?"

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Jan 24, 2021 01:20PM exbrnxgrl wrote:

I agree that though these are looking better now than 10 years ago for mbc survival, it’s still far from where any of us want these stats to be.

Jaycee, your question about who these long term survivors are is the 64,000 dollar question. Technically, I am not de novo as my met was an accidental discovery made 6 weeks after a bmx which staged me as IIB. Given that my met is an indolent grade 1, we know it was there at initial dx though there was no reason to suspect it. Thus far, the only answer I have as to why I’ve done well is simply luck of the draw. So, I am one of those outliers yet we don’t have any concrete explanation as to why. I did not choose to be an outlier nor do I follow any special diets, protocols or regimens, other than general good nutritional practices so I keep coming back to simple luck. And, I hate that. I hate that something has allowed me to have a fairly normal life yet I have no idea why nor can I “share” it with others. I am not saying we should throw a big celebration for the statistical increase in longevity among mbc patients as we surely have far to go, but however small it is a step forward

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 24, 2021 01:54PM jaycee49 wrote:

exbrnxgrl, I'm not trying to make you feel guilty for surviving or to figure out why some people do and some don't. I myself have had MBC for five years (and possibly seven, same situation as you have, lung "spots" there at the begining, not called mets until later). But calling MBC chronic is just WRONG and medical professionals who do it need to be corrected (as if I could do that). Spreading that false info all over social media lets our friends and family wonder what the big deal is about. I feel it more and more lately. Even my nurses are doing it. They see their patients die all the time so what am I complaining about five years out? They don't say it point-blank but I feel it.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Jan 24, 2021 02:03PM - edited Jan 24, 2021 02:08PM by exbrnxgrl

Ah, I see. Yes, I do have a problem with the word chronic too. My mo has never used that word nor do I. As I wrote earlier, chronic implies that if one follows a prescribed tx path then you will survive. Of course we know that is simply not true. I just call myself an outlier. Take care.

PS: I am always trying to figure out why I have done so well for so long because I hope it will help others. This is why I participate in Nikhil Wagle's MBC Project.

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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