Topic: My Husband, My Life, My Love, My Family, My Cancer

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute — Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Jul 6, 2017 05:38PM - edited Oct 28, 2019 09:42AM by micmel

Posted on: Jul 6, 2017 05:38PM - edited Oct 28, 2019 09:42AM by micmel

micmel wrote:

As I go through this forced path I have been thrown down, I have come to realize the love I have always had for my husband was strong. He is amazing and I love him with my very soul and entire heart. Never would I ever imagine the thought of dying and him being alone. Then the worst part hit me!! I can't seem to shake the horrible sorrow of thinking of another woman taking my place in his life and his heart, and if I Am honest his bed. He is my best friend and the love of my life, I would never need another for any reason. He makes my life complete, and then this happens. How do I process that I most likely won't be the one growing old on the porch that we have talked about, how do I process, someone else sitting in that chair? I hate this trajectory path I've been spun onto, and everyday I feel grief and deep sorrow. How do I live everyday knowing in the back of my mind, I feel like a place holder, for another woman who will be stepping into my life when I die of this horrible disease, more sooner than later. Why would I even want to take any medicines or treatments, when the answer is pretty obviously in front of my face.? Why do we fight so hard for something we cannot control ? Why do we hurt so badly thinking about letting go, or giving up? It's a four letter word that holds so much power. That word is LOVE..... If you have ever felt this way. Share with me, because I understand, I feel this way everyday. I also don't know what to do with the sadness of loss or how to process the process of dying. However slow or fast it may be. Please share your love stories with me, how did you meet? How long together? I want to know your stories, everyone has their person. Everyone loves.....tell me about your family, your friends, your life too, as if this was your living room. ♥️

We are team FU cancer (Named by Parry, our sweet sister) and this is our Lol pub and living room. Welcome, put your feet up and just be you!

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 2/9/2016 AC Surgery 6/20/2016 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left) Chemotherapy 7/19/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/6/2016 Ibrance (palbociclib) Surgery Chemotherapy Chemotherapy Hormonal Therapy Arimidex (anastrozole)
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Aug 20, 2022 11:49AM earlymodern wrote:

Anx: the fibula is not a particularly common place for a bony metastasis of breast cancer, especially if you don't have other bone mets. Bone 'edema' (increased signal on T2 series) is not specific, in the same way that technetium uptake on a bone scan is not specific (it might be tumor, but it could be arthritis, trauma, or osteonecrosis as emac mentioned). A definitive diagnosis is most important if this would represent a progression of disease that would make a change in therapy advisable, or If it is causing pain or risks pathological fracture. Biopsy really is the definitive way to make a diagnosis. One alternative is to wait and see what happens (either over some period of time, or with different imaging modalities): depending on your circumstances, 'tincture of time' might be advisable. If you do have a biopsy, and the tissue is cancer, it might be worthwhile discussing next-generation sequencing (WGS) with your oncologist: There can be genetic drift of cancer cells over time, especially under the selection pressures of treatment; and the landscape of "actionable variants" is changing rapidly enough that (even if not helpful now) this might offer insights for therapy in coming years.

As you might be able to tell, my way of coping with uncertainty and anxiety is to intellectualize it, which often leads me to distinguishing between the things I have control over and those I don't. For me at least, that helps "let go" of some anxious thoughts and helps to focus on what I can do to be as happy as possible under the given circumstances.

All of the above is definitely not medical advice, especially since I know almost nothing about your situation. In my experience, making a list of questions (and having someone attend medical visits with you) is very helpful, especially given the intense time pressures that most health-care providers face. Best of luck to you, I'll be hoping this turns out to be nothing important.

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Aug 20, 2022 03:42PM - edited Aug 20, 2022 03:44PM by anx789

early modern - mri also mentioned periosteal new bone formation and cortical erosion - does this mean tumor is present or forming? It mentioned “heterogeneous T1 hyperintensify," not T2. I find myself looking for discrepancies and gray areas to keep my hopes up. I just hate dealing with imaging report, I told my Onco I prefer to do biopsy first before Pet scan to spare me from this misery but he thinks bone biopsy is very invasive, is it? Or does he wants to do Pet scan first to see if any other parts light up to confirm met because like you said, fibula is very unlikely part for bone met?

Dx 9/25/2018, IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Aug 20, 2022 07:02PM emac877 wrote:

Struggling the last couple of days with pretty bad fatigue. I don't know if this is the rad tx catching up with me finally or if I've just been trying to do too much and ignoring my fatigue. Lately I have been sleeping better but still feet tired in the late afternoon to the point I can hardly think straight. On my PCPs advice I am trying really hard not to nap during the day but yesterday I came home from treatment and just crashed for about an hour and a half. I'm done Tuesday with rads. I did splurge and get a frozen pumpkin spice latte from The Human Bean. I know I'm early on pumpkin spice season but I couldn't resist. The calories were worth it :-)

Mae - Great picture of the pups!

Anx - An ortho/onc sounds like a good idea. I agree with Earlymodern, that's some great info. I hope you get some solid answers soon.

Hello to the rest of the living room! I hope you all are having a good weekend.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 3/21/2018 Lumpectomy; Lumpectomy (Right); Lymph node removal Chemotherapy 6/7/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/26/2018 Whole breast: Breast, Chest wall Dx 12/4/2019, IDC, Stage IV, metastasized to bone Surgery 12/10/2019 Radiation Therapy 12/22/2019 External Local Metastases 12/22/2019 Radiation therapy: Bone Targeted Therapy 1/6/2020 Verzenio Hormonal Therapy 6/22/2021 Faslodex (fulvestrant)
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Aug 20, 2022 10:12PM - edited Aug 20, 2022 10:18PM by mara51506

It depends what time in the afternoon you are napping and the duration, sometimes a 20 min nap helps. I think it is normal for the body to be extra tired from treatment. I get drowsy from Herceptin even if it is a targeted therapy. I do fall asleep for the rest of the day and night. I know I tend to fall asleep even during shows or movies without realizing it, wind up staying up until 2 to 3 am after but I count the sleep beforehand as part of that night's sleep.

Debating with myself about getting chips to use as seasoning on beans and such, not crazy amounts but thinking of adding them to my coffee/spice grinder just to add some extra flavours. We will see, if I do, off to Walmart tomorrow. I would buy the no name brand. Wanting a bbq flavour, sour cream and onion, cheese and whatever else strikes my fancy. Can grind them to a fine powder.

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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Aug 21, 2022 05:54AM candy-678 wrote:

Anyone for pocket duty this week?

I have none, but may have missed some with all that is going on here with my Dad.

He is struggling to adapt to the Nursing Home. He has confusion too, so it is hard to reason with him. As emac said above about her fatigue, I have been really nauseated lately. I was struggling with that before from the Lynparza, but it got better. I don't know if it is my nerves, or that I was so busy with Dad that I squelched the symptoms and now they are so bad I cannot ignore them. I have not been eating well and really fighting the nausea.

And I am trying to get in some sort of a schedule with going to the nursing home to be with Dad. I know I cannot go every day as I am too tired. But he likes me there and I want to make sure he is being cared for. But I worry about the germ factor, as you all know I am a germaphobe. Not just Covid, but all the germies in a long term facility.

April 2021 first progression and flip ER-/PR+ now. Current treatment as of Sept 2021 is Lynparza, Lupron (been on since Nov 2017), and Xgeva (been on since Nov 2017). 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- Hormonal Therapy 11/1/2017 Femara (letrozole) Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Dx 4/2021, ER-/PR+, HER2- Targeted Therapy 9/1/2021 Lynparza (olaparib) Chemotherapy AC Surgery Lymph node removal; Mastectomy; Mastectomy (Left)
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Aug 21, 2022 06:25AM mara51506 wrote:

Candy none for me this week but signing on for pocket duty for you still dealing with caring for Dad while he is in LTC and your germophobia. That is a hard combo to deal with.

Anx, pocket duty of support for you as you are still waiting for more info and possible scans to see what you may be dealing with.

It is super cloudy but think between storms will bus to the mall to get a mall walk but also the chips mentioned yesterday that I want to grind up as extra seasonings and extra large plastic containers for more airtight storage at Dollarama as well.

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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Aug 21, 2022 08:28AM livingivlife wrote:

Anx- it is so difficult to wait for conclusive results. I would go with the PET scan first as suggested because the biopsy is definitely more evasive. However I am no doctor but would follow the doctors lead. May you find the answers soon.

Emac- I have fatigue on a daily basis and do not hesitate to rest in the afternoon. I may not sleep but I need that rest period.

Candy- I do hope your father settles in soon. It is hard enough on you with your own health issues. Feeling more nauseous could definitely be caused by nerves. Please take care of yourself!

Mae- oh those huge puppies eyes ! I hope you had a great dinner with your friend

Mara- all those stupid inconvenients at your apartment would drive me crazy . I know patience is a virtue but there's only so much one can take.

It is very hot out here today. My plans were to go into Charlottetown to take my special son out to the open market and walk around the pier but it is just too hot. We will bring him out to our house tomorrow. It will be the first time he will be here without Abby. The first thing he does when he comes is grab a treat and gives it to Abby. How do you explain to someone that doesn't understand what has happened to Abby?

Waving hello to everyone 😊

Deb
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Aug 21, 2022 09:27AM mara51506 wrote:

I would be as straight and age appropriate as possible when breaking the news. Kids will be sad but most kids are resilient as well and honesty again to their age and comprehension is the best. JMO. Hopefully others chime up. As far as patience, I don't feel as angry, more resigned. I will just check the door at night, got to remember that there are 3 more levels here with doors and not convinced they will have handles. Not in the mood to climb the stairs to check. I will just check my floor at the end of the day. My apartment is in working order and that is all I need.

I ordered Walmart delivery for some groceries. I wanted chips that I can chop up for seasoning in my coffee/spice grinder. I would get more value and put some of my own seasoning in as well, got more queso, sour cream and butter along with some garlic spread and cat litter. I do pay a fee but the cost savings absorb some of that along with surveys. Just too stormy here today to go by bus. One struggle I was having was getting the order up to the minimum to be able to have it delivered. The queso and beefless ground along with the cat litter helped boosted it up to be able to have delivered.

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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Aug 21, 2022 10:24AM tanya_djamila wrote:

Good afternoon all

Been reading along. Hot today here in Florida. I swam and cooled off. last week I got the steroid injections for back pain. It seems to work but ironically feels weird to not have the pain. They didn’t do my hips at the same time but so far it seems to be working.
next week I have regular faslodex shots Tuesday and port dye study Wednesday. I hope the port is fixable bc if not it will have to be replaced.

Candy I hope you have a more relaxing day and that your dad is getting good care.

Mara I ate using a raclette grill while in France. I will try it out with my granddaughter Monday as I found one here on Amazon. It seems like a nice way for family gathering.

Mae the puppies are 3 lbs that’s so cute. They’ll always seem like puppies.

Waving hello to all boo-boo special shout out my friend. I hope you’re comfortable.

Tany


Tanya Dx 8/19/2003, LCIS, Right, 6cm+, Stage IV, metastasized to bone/other, 28/28 nodes, ER+, HER2- Dx 4/19/2017, Stage IV, metastasized to bone/other, 0/0 nodes, ER+, HER2- Immunotherapy 6/1/2017
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Aug 21, 2022 11:58AM elderberry wrote:

Waving hi to all

wrenn: I cannot imagine how stressful and painful it must be to be having to put your DH in a care home and selling the house you shared with him. I wish you strength and peace,

candy: we love your pocket-duty detail but please concern yourself with your beloved father. I am not a germaphobe. If I was I would have stopped chewing my nails decades ago. But care facilities are petri dishes (or peach tree dishes as MTG calls it ha ha ha).

anx: I have an anomaly in my upper left arm bone marrow. It glows in PET scans. I had the whole gammut of tests. I did have a bone marrow biopsy. They just drilled through the muscle, the bone and extracted a bit of marrow. It wasn't all that bad. I don't know what your biopsy might involve. I might be more invasive. It showed up again on another PET six months later but it is unchanged and remains an anomaly. PET in September so we will see if it is still just "there"

tanya: raclette grills......cheese....just the best

mae: I went back to reread and refresh my lousy memory. I had meant to say how much I loved the pic of the two donkeys. I used to dream about having some property where I could have a donkey. Love horses but a donkey seems more my speed. But that would put me out in the country/hinterlands and I am too urban and too old to be too far away from amenities.

LivingIVLIfe: I am sorry about losing your beloved Abby. Damn pets. We love them so much, they love us back and then go and break our hearts. I don't know what to suggest you say to your special needs son. I wish I could be more helpful.

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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