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Topic: Practical Advice About Home Hospice/Home Care

Forum: Palliative Therapy/Hospice Care — A unique forum ONLY for those trying to live well and/or trying to die well.

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Posted on: Jan 14, 2023 11:31AM

Posted on: Jan 14, 2023 11:31AM

susaninsf wrote:

Started this thread because I found that the transition to hospice at home was more complex than I expected and there are many others here who had helpful tips. Many tips were not from those in hospice but from friends who figured out how to do things despite limited mobility. Looking at the past posts, the following was very brief but I would like this to be a repository of information, emotional and physical.

Thanks to all for participating!

Hugs, Susan

Mets to brain, lung, liver, heart, eye, bone. Currently on PY-159+Keytruda immunotherapy trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel; Reconstruction (Right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy; Mastectomy (Right) Dx 3/29/2014, DCIS, Left, 4cm, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External Local Metastases 4/28/2014 Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External Local Metastases 1/8/2015 Radiation therapy: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External Local Metastases 11/27/2017 Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External Local Metastases 10/23/2019 Brain Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Chemotherapy 11/2/2021 Gemzar (gemcitabine) Hormonal Therapy 12/3/2021 Aromasin (exemestane) Targeted Therapy 1/6/2022 Targeted Therapy 6/24/2022 Enhertu (fam-trastuzumab deruxtecan-nxki) Chemotherapy 9/8/2022 Ellence (epirubicin) Immunotherapy 11/29/2022 Keytruda (pembrolizumab) Immunotherapy 11/29/2022 Targeted Therapy Verzenio Immunotherapy Tecentriq (atezolizumab)
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Jan 16, 2023 08:56PM tinkerbell107 wrote:

After the legal, home care & hospice component is finalized, I think about my mental health. My support system may not be the folks who I want to lean on for EOL discussions, if lucid to have a discussion. I often find myself being cautious of my thoughts and feelings about EOL issues especially with the inner circle (they are in denial). I guess what I'm saying is maybe have in a mind that "person" who can handle it, albeit a minister, death doula, counselor or a friend, outside the immediate family.

Dx 8/23/2019, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, 5/6 nodes, ER+/PR+, HER2-
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Jan 17, 2023 10:46AM mara51506 wrote:

I certainly miss Lita too and having these instructions are better than someone else having to plan.

2015 chemos AC plus T Herceptin august 12 2016 craniotomy for brain met Sept 23 whole brain radiation November 2016 Herceptin, Perjeta and Taxol. Dec 2016, Dropped the Taxol due to extreme side effects, continuing Herceptin and Perjeta. Dx 3/15/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 4/21/2015 Lymph node removal; Mastectomy; Mastectomy (Right) Dx 5/15/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2+ Dx 7/29/2016, IBC, Right, 6cm+, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2+
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Jan 19, 2023 01:03PM nkb wrote:

SusanSF- just checking in to see how your are doing? I hope that you are comfortable and spending time with loved ones. thinking of you

Also you SS- hoping you are getting more comfottable

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Targeted Therapy 6/1/2017 Ibrance (palbociclib) Targeted Therapy 3/13/2019 Afinitor (everolimus) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Chemotherapy 3/10/2020 Xeloda (capecitabine) Targeted Therapy 9/13/2022 Enhertu (fam-trastuzumab deruxtecan-nxki)
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Jan 20, 2023 02:45PM elderberry wrote:

mae: that cover is hilarious. I have a bright yellow accordion file folder. In my first month after diagnosis, convinced all I had was a few more months, I printed up info about a crematorium where they put your ashes in a mulberry paper casket so you can have a legal water burial. I printed up a boating company's info that will take your mulberry casket and a few guests out the appropriate distance. I don't want a funeral. Zero clergy. Maybe a wake so my friends can get drunk. I have a play list. I have a poem I'd like read.

My Advanced Planning Guide is mostly filled out. I am sure I will end up changing some things.

WIll - that needs updating so badly. I have no excuses for that one.

Passwords: Fortunately I don't have too many.

Lita. Bless her.





De Novo - this isn't a "brave battle" - it is a "furious struggle" Dx 3/6/2019, IDC, Left, 5cm, Stage IV, metastasized to liver, HER2+ Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Targeted Therapy Perjeta (pertuzumab)
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Jan 20, 2023 04:32PM susaninsf wrote:

I believe many of us share a dark humor about death that would make others feel uncomfortable. This is partially what sets us apart.

Many years ago, on the way back home from a cancer retreat, Commonweal, One of my friends who was an MD admitted that she liked to guess how each of us would die. She said she was stuck on one woman, also in the car, who had mets on her aorta. The most likely scenario for this woman was that she would suddenly collapse and die on the sidewalk We all shouted simultaneouslu "She's so lucky!" Unfortunately, her death was not fast nor painless but a girl's gotta dream, right.

Hugs, Susan

Mets to brain, lung, liver, heart, eye, bone. Currently on PY-159+Keytruda immunotherapy trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel; Reconstruction (Right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy; Mastectomy (Right) Dx 3/29/2014, DCIS, Left, 4cm, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External Local Metastases 4/28/2014 Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External Local Metastases 1/8/2015 Radiation therapy: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External Local Metastases 11/27/2017 Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External Local Metastases 10/23/2019 Brain Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Chemotherapy 11/2/2021 Gemzar (gemcitabine) Hormonal Therapy 12/3/2021 Aromasin (exemestane) Targeted Therapy 1/6/2022 Targeted Therapy 6/24/2022 Enhertu (fam-trastuzumab deruxtecan-nxki) Chemotherapy 9/8/2022 Ellence (epirubicin) Immunotherapy 11/29/2022 Keytruda (pembrolizumab) Immunotherapy 11/29/2022 Targeted Therapy Verzenio Immunotherapy Tecentriq (atezolizumab)
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Jan 20, 2023 04:55PM elderberry wrote:

Susan: I used to be appalled when people would say to other people like it was a good thing "You could get hit by a bus" I'm thinking now that would be okay. One moment you are outside, feeling fine, maybe going to pick up something nice for dinner or maybe some potting plants. All is right with the world then you step into an intersection and the last thing you see is the grill of a bus. Hard lines on the driver though, his passengers and any onlookers.

Maybe the planet will be hit by an asteroid and all this discussion will be moot.


De Novo - this isn't a "brave battle" - it is a "furious struggle" Dx 3/6/2019, IDC, Left, 5cm, Stage IV, metastasized to liver, HER2+ Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Targeted Therapy Perjeta (pertuzumab)
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Jan 20, 2023 05:02PM susaninsf wrote:

A couple of days after I went into hospice, I was sent this pink paper to post near my bed to clearly state my "Physician Orders fof Life Sustaining Treatments." Covers things like Full Treatment, Selective Treatment (Can use IV antibiotics. Avoid ICU) Comfort Focused Treatment (Request transfer to hospital only if comfort needs cannot be met in current location.) No feeding tubes.

The hospice team will also do what they can to keep me out of the ER

Mets to brain, lung, liver, heart, eye, bone. Currently on PY-159+Keytruda immunotherapy trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel; Reconstruction (Right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy; Mastectomy (Right) Dx 3/29/2014, DCIS, Left, 4cm, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External Local Metastases 4/28/2014 Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External Local Metastases 1/8/2015 Radiation therapy: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External Local Metastases 11/27/2017 Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External Local Metastases 10/23/2019 Brain Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Chemotherapy 11/2/2021 Gemzar (gemcitabine) Hormonal Therapy 12/3/2021 Aromasin (exemestane) Targeted Therapy 1/6/2022 Targeted Therapy 6/24/2022 Enhertu (fam-trastuzumab deruxtecan-nxki) Chemotherapy 9/8/2022 Ellence (epirubicin) Immunotherapy 11/29/2022 Keytruda (pembrolizumab) Immunotherapy 11/29/2022 Targeted Therapy Verzenio Immunotherapy Tecentriq (atezolizumab)
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Jan 20, 2023 05:30PM susaninsf wrote:

Good point, Elderberry. One other thing I've learned since being on hospice is the wide diversity of approaches I've faced. Some people are over the top cheerful, some maudlin wanting to relieve every memory we've ever shared. Some have been anxious and can't look me in the eye. Most ask how I'm doing. Umm, I've been better.

I've visited friends on their death beds and I hope I treated them with the love and respect I have always given them.

Hugs, Susam

Mets to brain, lung, liver, heart, eye, bone. Currently on PY-159+Keytruda immunotherapy trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel; Reconstruction (Right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy; Mastectomy (Right) Dx 3/29/2014, DCIS, Left, 4cm, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External Local Metastases 4/28/2014 Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External Local Metastases 1/8/2015 Radiation therapy: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External Local Metastases 11/27/2017 Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External Local Metastases 10/23/2019 Brain Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Chemotherapy 11/2/2021 Gemzar (gemcitabine) Hormonal Therapy 12/3/2021 Aromasin (exemestane) Targeted Therapy 1/6/2022 Targeted Therapy 6/24/2022 Enhertu (fam-trastuzumab deruxtecan-nxki) Chemotherapy 9/8/2022 Ellence (epirubicin) Immunotherapy 11/29/2022 Keytruda (pembrolizumab) Immunotherapy 11/29/2022 Targeted Therapy Verzenio Immunotherapy Tecentriq (atezolizumab)
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Jan 28, 2023 10:32PM moderators wrote:

susaninsf, you are a superstar, always rising above, digging for information, supporting others. We are here for you and your loved ones, in heart and soul. 🕊️ xoxoxoxo. What an inspiration and support you are!! So grateful for YOU!


To send a PM to the Mods: community.breastcancer.org/my/...

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