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Topic: Things I don't tell people

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Aug 17, 2017 07:35AM

PrincessPincushion wrote:

When I got the diagnosis that my sciatica was actually Stage IV cancer in my sacrum, I was home alone. I sat on the floor and screamed for ten solid minutes.

There are days when I'm determined to live until I'm 90... There are days when I wonder why I bother taking these stupid medicines if I'm just going to die anyway.

Some days I'm so scared I feel like throwing up.

Every new ache or pain strikes panic in my heart... What if the medicines have already stopped working, and the cancer is spreading?

I have Psalm 23:4 in my signature because it's my Reminder Verse, but many days I'm lying when I say it. I do fear this evil.

I don't want to be gaunt and grey and skeletal.

I'm terrified of dying a slow and painful death.

I don't want to die.

Though I walk through the Valley of the Shadow of Death, I will fear NO EVIL, for You are with me. (Psalm 23) *(Formerly AmethystButterfly)* Dx 8/3/2012, IDC, Left, 3cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR+, HER2- Surgery 9/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/6/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2/27/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 3/8/2017 External: Bone Hormonal Therapy 4/17/2017 Femara (letrozole), Zoladex (goserelin) Dx 2/23/2018, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 2/23/2018 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Afinitor (everolimus) Targeted Therapy Ibrance (palbociclib) Radiation Therapy 3DCRT: Breast
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Aug 17, 2017 09:49AM Moderators wrote:

AmethystButterfly,

You're not alone in these feelings! There are so many here who understand exactly how you're feeling, and the struggle you endure on a daily basis. Please take comfort in the fact that you can come here and express your emotions to others who really get it. We're all here for you!

(((((Sending big hugs)))))

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 17, 2017 09:54AM Chicagoan wrote:

Dear Amethyst,

Thank you for being so vulnerable and articulating the fears most of us have experienced at times on this journey. I am grateful we have this place and community to say what we are really feeling. Hold tight to your Reminder verse-I do not think you are lying when you pray it.

The psalmist could say "I will fear no evil" not out of his own strength or courage but because "for You are with me." God is with us too, in our joys and in our sufferings. I pray that you will feel accompanied today by the Love that bears all things, believes all things, hopes all things and endures all things. God is with you.

I'm am praying Psalm 23 with you today.

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/27/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/27/2016 Ibrance (palbociclib)
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Aug 17, 2017 10:08AM cive wrote:

From a secular point of view, I believe you can find curves with time vs quality of live on the internet.  People who die from old age experience a much longer decline in quality of life than do those that die from cancer.  I hope that eases your mind, because you don't know that you won't be hit by the proverbial bus tomorrow.  But you do have today.

Heart 

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Aug 17, 2017 03:39PM Bigbhome wrote:

When I have days like that, I try to remind myself that there are worse things than this. My step-father-in-law has Alzheimer's, was was diagnosed a few months before me, that was 5 1/2 years ago, he is almost completely gone mentally, while my mind is fine. I can truly say that the idea of waking up in the morning and not knowing who I am, where I am and who are these people around me, had got to be so much worse. It doesn't always work, but most times it does.

I like your psalm also.

Hugs and prayers

Claudia

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Aug 17, 2017 04:36PM 50sgirl wrote:

Claudia, My father-in-law had Alzheimer's. It is a horrible disease for the entire family. I never knew when to say good-by to him because little pieces of him faded away each day. I have noticed that I can't think of words or names sometimes. I know that it is probably just age or medication hitting me, but I do worry once in a while although I don't dwell on it. I told my husband that if I am ever told that I have Alzheimer's, I am going to stop all treatments for MBC. I would rather die from MBC than Alzheimer's. Maybe I am crazy.

AmethystButterfly

Your feelings are quite normal. I have had spells of crying, nights of wakefulness, and times of fear. The worst times were when I was first diagnosed and when I experienced progression. Unfortunately, none of us can choose the time or method of our natural death. I have known several people who died from cancer including MBC. They did not all suffer horrible deaths. They did not grow gaunt and gray and skeletal. Pain is usually manageable, especially if someone is in hospice care. Comfort is one the goals of hospice. The process of dying is not always as terrible as it is depicted in tv, books, and movies.

I was diagnosed more than two years ago. I have to admit to you that I did not expect to live this long, yet here I am, living, breathing, enjoying life. Many others have had the disease much longer than I have. Do I still have days when I am sad and fearful? Of course I do, but now those days are few and far between. I consider this as bonus time, and I have every intention of taking advantage of every moment. I also believe that I could live for another 10 or 20 years. Why not?

Your diagnosis is still fairly recent. Do you have any medication for depression or anxiety? They have helped many people. I am glad that you have found this forum to share your thoughts and fears. Do you have only one area of bone mets? Has your MO said anything about radiation treatment?

These threads have helped me through some dark and difficult times. I think that your faith will help you through this time.

Hugs and prayers, Lynne



Dx 6/5/2015, IDC, Left, 3cm, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/25/2015 Arimidex (anastrozole) Dx 8/9/2016, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 1, 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)
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Aug 17, 2017 05:02PM PrincessPincushion wrote:

Thanks, everyone, for your words of encouragement. These are things that have built up inside me for months. I can't say them to my husband, because it would break him. I can't say them to my friends, because they wouldn't understand.

Most days are pretty good, but it's hard because I like to know what to expect, and all my onc talks about is the now. I even asked him about a prognosis, and I got a mumble mumble dunno. So I don't know if I'll die before my 17-year-old daughter graduates next June, or if I'll live to see my 14-year-old daughter graduate from college.

Lynne,

My doc put me on Effexor for depression and anxiety, and it does help, most of the time.

As for the bone mets, the largest mass was on my sacrum, but there were smaller tumors on 2 or 3 of the lumbar vertebrae, along with a spot on one lung (which was gone at my last PET), and an enlarged pelvic lymph node (which was normal size at my last PET). As for radiation, that was the first thing they did, because the tumor was so large in my sacrum that it was making it impossible for me to walk because of the nerve pain in my legs. My last PET showed that the sacral tumor has been shrinking, and that the bones are starting to scar over and heal. So... that's good news. But I don't know how fast this thing can just explode out of control. I feel so completely uninformed and unprepared for the future.

I'm trying to just live today and not worry about tomorrow, but I worry about my family, you know? My youngest is a Mama's Girl, especially, and I can't bear to think of what the future might be for her.

Though I walk through the Valley of the Shadow of Death, I will fear NO EVIL, for You are with me. (Psalm 23) *(Formerly AmethystButterfly)* Dx 8/3/2012, IDC, Left, 3cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR+, HER2- Surgery 9/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/6/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2/27/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 3/8/2017 External: Bone Hormonal Therapy 4/17/2017 Femara (letrozole), Zoladex (goserelin) Dx 2/23/2018, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 2/23/2018 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Afinitor (everolimus) Targeted Therapy Ibrance (palbociclib) Radiation Therapy 3DCRT: Breast
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Aug 17, 2017 06:20PM 50sgirl wrote:

AmethystButterfly, Yes indeed, that feeling of not knowing what will happen is hard to deal with. It sounds like you treatment is working! That is wonderful WOOHOO! I know, now you are wondering how long it will continue to work, right? I have decided that there is just no way of knowing. I have never asked my MO how long I will live because I told him I was going to live longer than he expects whatever that is. I had an issue (not cancer-related) that required kidney surgery a few months ago. My urologist called my MO to discuss it and make sure he was comfortable with surgery. My MO told me that although he has no crystal ball, he is pretty sure I will be around long enough to make the surgery worthwhile. I felt pretty good about that since the alternative was to have a stent that would need to be replaced every 3 or 4 months for the rest of my life. He told me that he thought that would be a lot of stents.

I understand why you worry that things will quickly things will explode out of control, but your MO does all those blood test, exams, and scans to make sure he can identify issues before they get out of control. I know it's hard to relax. It's so much to take in.

I tend to go on and on, but here is what I want you to remember. You are still on your first treatment, and it could work well for years. There are many other options available if your current medication fails. There are many additional drugs being developed and/or tested. Many of those will also be available to you. Immunotherapy and vaccines are being researched and developed. Genetic mutations are being discovered and identified that could lead to a more personalized approach to treatment. There have been significant improvements in the care and treatment for metastatic breast cancer, and more are coming. I think that you will be here to see your Mama's girl graduate from high school.

Hugs, Lynne

Dx 6/5/2015, IDC, Left, 3cm, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/25/2015 Arimidex (anastrozole) Dx 8/9/2016, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 1, 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)
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Aug 17, 2017 08:04PM pajim wrote:

AmethystButterfly, What you are feeling is totally normal and I'm glad you're getting some chemical help for it.

Here's the line of thinking that helped me. There are more than a dozen treatments for ER+ metastatic breast cancer (like we both have). If each one of them worked for six months (if you're optimistic think one year), then you'll live for six years. That's almost time enough to see your youngest graduate. And since my first treatment lasted for three years before progression, I'm ahead of the game.

Not to mention that in the last three years several new medications have been approved for use. So the dozen meds we hypothetically started with have gone to 14. And more are coming along.

Your treatment is working, you've been on for for almost six months and it'll be a while before it stops working. You're ahead of that particular rationalization game too.

The other thing I told myself was I wasn't going to worry about dying until the day they put in a port and I start iv chemo. That day is getting closer now, but when the time comes I'll find another rationalization.

Maybe one of those lines of thinking will help you. Meantime you have a lot of living to do.

Hang in there and many hugs from me.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/27/2013 Femara (letrozole) Hormonal Therapy 4/22/2013 Faslodex (fulvestrant) Targeted Therapy 2/25/2016 Ibrance (palbociclib) Chemotherapy 6/19/2017 Xeloda (capecitabine)
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Aug 17, 2017 08:46PM - edited Aug 18, 2017 07:34AM by DivineMrsM

Butterfly, I love your passion. It is good that you are in touch with the roller coaster of emotions this diagnosis brings. I have gone thru many similar feelings.

You are getting great advice and support from others postng on this thread, I agree with what they've all said.

Something I've learned along the way is this: often I use to look to an authority figure, like a doctor, to tell me how things will work out and what the future holds. Then at some point, I started to trust my own self and began standing on my own two feet, facing this thing and dealing with it. I still very much rely on knowing my doctors are making sure I get the right treatment, and I need daily support by coming to this forum and checking in and connecting with others here. However, there are large blocks of time when I am just me by myself, going thru life, and I, quaking in my shoes and shaking to my core, started to take this one small step at a time. Definitely antianxiety and antidepressant meds help.

I frame it as living with metastatic breast cancer, not dying from it. I have experienced some of the best times of my life since being diagnosed, not because of mbc but in spite of it. Yes, that sense of well being was totally and completely destroyed when I first felt the lump and It aint coming back. But I had to move forward because that's how life works.

One more thing that made sense to me was hearing that the opposite of certainty is not uncertainty. The opposite of certainty is open-mindedness. So I practice being open minded about how life will continue to unfold. Because no one really knows, no one is certan how things will work out. Yep, we all wish we could know, know so we can plan. But....in the absence of that, I try to be open minded and truly live today and not some far off future.

Best wishes to you.



found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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Aug 17, 2017 09:44PM Lynnwood1960 wrote:

Divine, your words are poignant and beautiful.

Dx 4/6/2015, ILC, Right, 3cm, Stage IV, Grade 2, 0/12 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib)
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Nov 14, 2017 06:53AM PrincessPincushion wrote:

Thank you, everyone, for your kind and encouraging words. It's been quite the ride the last 9 months. I went from unable to walk and literally screaming and writhing in pain to pain-free and back to work! At my June PET, my sacral spine was pretty much entirely consumed by the tumor, radiation had had no effect at all, and my doctors were not at all sure if they were going to get me through it (though they didn't say as much at the time). Overnight, like a switch was flipped, the pain just... left. My September PET showed no active cancer. No nodules on my lungs or stomach, and regrowth of bone in my spine! I am in remission. My strength increases daily.

I do still cry often, and I struggle with the fear of the return of my cancer, but... I also see my current status as a direct divine miracle. I believe my God heals. So I'm going to enjoy my health as long as I have it, and give thanks to my God for each day He blesses me with.

I am grateful for this community of sisters, and I pray that each of you will be able to experience the peace of God, the presence of God, and His divine touch!

Though I walk through the Valley of the Shadow of Death, I will fear NO EVIL, for You are with me. (Psalm 23) *(Formerly AmethystButterfly)* Dx 8/3/2012, IDC, Left, 3cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR+, HER2- Surgery 9/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/6/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2/27/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 3/8/2017 External: Bone Hormonal Therapy 4/17/2017 Femara (letrozole), Zoladex (goserelin) Dx 2/23/2018, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 2/23/2018 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Afinitor (everolimus) Targeted Therapy Ibrance (palbociclib) Radiation Therapy 3DCRT: Breast
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Nov 15, 2017 02:54PM RonnieKay wrote:

Dear Amethyst....I totally hear & remember feeling as you do (my mets dx was Dec 2012...given 5 months). It lasted a long while and I, like you, suffered alone (actually, on these boards), because i couldn't bear to make everyone else more scared. I added Prozac to chemo & biologics. SUE, a sister here, said she was trying acupuncture for the same symptoms so I gave it a try. I've never stopped! I call it one of my biggest lifesavers! I am NED now, which helps, I know...but the dark thoughts are always close by. I agree that this place, where we can bare our souls, is so important. Sending peace & hugs

Dx 6/1/2009, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 6/23/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/10/2009 Breast Hormonal Therapy 1/6/2010 Femara (letrozole) Dx 6/9/2011, IDC, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/30/2011 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 6/28/2012 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 12/21/2012, IDC, 6cm+, Stage IV, 0/0 nodes, mets, ER+/PR+, HER2+
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Feb 23, 2018 05:30PM PrincessPincushion wrote:

Okay, so a year after my diagnosis, I've come up with some more things that I don't tell people. Tell me if I'm the only one...

1. I'm okay with dying. That doesn't mean I'm giving up. It means I know it's coming and I refuse to be afraid of it. Life is a death sentence... nobody gets out of it alive. And I've come to terms with this.

2. There are days I think my family will be better off once I'm gone. Again, I'm not giving up. But it's so hard watching my husband struggle to keep up with the financial burden of my treatments, and to watch my kids have to give up all sorts of things because we just can't afford them... And I hate being the one who's too tired to do this or that.

3. I have no idea what I'm doing. Nothing more to add to this one...

Though I walk through the Valley of the Shadow of Death, I will fear NO EVIL, for You are with me. (Psalm 23) *(Formerly AmethystButterfly)* Dx 8/3/2012, IDC, Left, 3cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR+, HER2- Surgery 9/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/6/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2/27/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 3/8/2017 External: Bone Hormonal Therapy 4/17/2017 Femara (letrozole), Zoladex (goserelin) Dx 2/23/2018, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 2/23/2018 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Afinitor (everolimus) Targeted Therapy Ibrance (palbociclib) Radiation Therapy 3DCRT: Breast
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Feb 24, 2018 11:24AM PrincessPincushion wrote:

I work as a grocery cashier. This morning I had an elderly customer, laughing at her infirmities, say, "Don't get old!" I couldn't help thinking, No worries about that...

Odd moments in the life of a cancer warrior...

Though I walk through the Valley of the Shadow of Death, I will fear NO EVIL, for You are with me. (Psalm 23) *(Formerly AmethystButterfly)* Dx 8/3/2012, IDC, Left, 3cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR+, HER2- Surgery 9/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/6/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2/27/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 3/8/2017 External: Bone Hormonal Therapy 4/17/2017 Femara (letrozole), Zoladex (goserelin) Dx 2/23/2018, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 2/23/2018 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Afinitor (everolimus) Targeted Therapy Ibrance (palbociclib) Radiation Therapy 3DCRT: Breast
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Apr 11, 2018 11:44AM babyduck wrote:

like this board! So many things I don't share with others. Family and friends are great!! However....i know they get tired of it just like we do. We just don't have the luxury of not thinking about ..... the fact we have it... what it's done to our bodies...our minds....our wallets....our relationships....ugh.

I am also stable at the moment. So great! But when does the shoe drop??

A question..... I'm on disability. Financially we are great. But.....i do work a few hrs a week and my employer has asked if I want to come back full time. And I do. Really! I just don't know if I'm making the right choice. It won't affect disability issues for 6 mos because LTD and SSD give u a grace period to return back but.... I know it could affect EVERYTHING else. My stamina isn't the same....my daughter is in another state..so my flexibility to visit her would be gone....and my husband isn't for it at all. He's wonderful and would support whatever decision.....

What do y'all think??

Dx 1/31/2014, IDC, Right, 4cm, Stage IV, metastasized to liver, Grade 3, 1/5 nodes, ER+/PR-, HER2+ (FISH) Chemotherapy 2/27/2014 AC + T (Taxol) Chemotherapy 8/7/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Apr 11, 2018 12:39PM LoriCA wrote:

Princess Pincushion you're not the only one who feels that way. My IBC grew so fast that my doctors didn't think I would pull through it. Seven months ago I was in the hospital fighting for my life. I can't tell you how many times since then that I've thought to myself it would've been better for everyone if I had just died when they thought I was going to. It's not just the growing pile of medical bills and the day to day struggle of dealing with the disease, but my family was mentally prepared for my death and it breaks my heart to know that they are going to have go through all of that again. When I'm in really bad shape I often find myself wishing it would all be over with so my husband can start healing and moving forward instead of being stuck in this hell with me.

Babyduck maybe your boss will let you give it a trial run for a week or two to see if your stamina is up to it, and see if you're okay with how it affects the rest of your life?

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab)
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Apr 12, 2018 06:59AM PrincessPincushion wrote:

BabyDuck, I'm with Lori. See if you can give it a trial run. Be sure you are remembering to balance the energy devoted to work with the energy you reserve for those most important relationships. I'm glad you have a supportive husband who seems to want the best for you! I can't imagine going through this without my husband.

This is the craziest life, isn't it? And nobody understands who isn't in it.

Though I walk through the Valley of the Shadow of Death, I will fear NO EVIL, for You are with me. (Psalm 23) *(Formerly AmethystButterfly)* Dx 8/3/2012, IDC, Left, 3cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR+, HER2- Surgery 9/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/6/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2/27/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 3/8/2017 External: Bone Hormonal Therapy 4/17/2017 Femara (letrozole), Zoladex (goserelin) Dx 2/23/2018, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 2/23/2018 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Afinitor (everolimus) Targeted Therapy Ibrance (palbociclib) Radiation Therapy 3DCRT: Breast
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Apr 12, 2018 11:44AM peculiargirl wrote:

Hi, everyone. Thanks for this thread. It's so helpful to know I'm not alone in these thoughts. I'm newly diagnosed - well, about 2 weeks now, I guess. 2 days after my 2 year cancer-free anniversary, I got the call that I had a tumor in my ribcage. Now the RO says at least 4 - each side of my ribcage and in my spine - and he says they know there are more, these are just the ones that he's concerned enough to treat. My insurance denied a PET scan, so tomorrow I'm having a Nuclear Med body scan and CT of my abdomen and pelvis - AFTER my radiation! I'm sure I'll be glowing by the end of the day!! The tests are to determine where to biopsy, which will determine what my MO does.

So my insurance company set me up with a nurse case manager. She called yesterday to check on me, then started in on her required questions. After the medical screening, she asked a bunch of depression screening questions. When she was finished, she told me I'm depressed. I HAVE METASTATIC BREAST CANCER - OF COURSE I'M DEPRESSED!!!

it's funny now - yesterday I was just annoyed. Smile

Peace and Love,
Kathy

Dx 7/23/2015, ILC, Left, 5cm, Stage IIIC, 10/11 nodes, ER+/PR+ Surgery 8/13/2015 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 10/15/2015 AC + T (Taxol) Radiation Therapy 4/5/2016 Breast Hormonal Therapy 6/1/2016 Arimidex (anastrozole) Dx 3/23/2018, Stage IV, metastasized to bone
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May 31, 2018 03:27PM PrincessPincushion wrote:

Hi, Peculiar!

I love your name. That's fabulous.

I'm so sorry your insurance denied a pet scan. I honestly cannot believe they did that. How did your scans come back?

If your life is anything like mine, you probably find yourself comforting others more than you let others comfort you. It's hard to let people see my own fears and grief, maybe because that makes it real that I have a terminal illness. But I'm learning that it's essential to have at least one person to go to with all the Ugly that nobody else sees.

My mo put me on Effexor for depression. It's really helped. I couldn't get myself calm enough to even begin to cope with my disease, and this has settled me enough to be able to process. My emotions were so frantic that I couldn't think, couldn't pray, some days felt like I could hardly breathe. Now, there are days when I cry, but it's not like it was. I do hope you'll be able to find someone peace and comfort. There's still a lot of living left to be done!

Blessings on your journey!

Princess Pincushion


Though I walk through the Valley of the Shadow of Death, I will fear NO EVIL, for You are with me. (Psalm 23) *(Formerly AmethystButterfly)* Dx 8/3/2012, IDC, Left, 3cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR+, HER2- Surgery 9/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/6/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2/27/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 3/8/2017 External: Bone Hormonal Therapy 4/17/2017 Femara (letrozole), Zoladex (goserelin) Dx 2/23/2018, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 2/23/2018 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Afinitor (everolimus) Targeted Therapy Ibrance (palbociclib) Radiation Therapy 3DCRT: Breast
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Jun 13, 2018 07:34AM babyduck wrote:

Thanks for the previous input on work.... I've just had another CLEAR scan. Yoohoo! So going back to work is even more on my mind. I did promise my DH I would wait til after summer. Just so we can come and go as we please.

I have found out that on LTD and SSD I have a grace period....so if things don't work out...no harm done. I do worry that if I do this then I could get the run around trying to go back to disability if need be (mainly because of NED).

Question of the day....anybody ever returned to work after Stage IV? I know many who never had to stop working. Or couldn't. But anybody ever return after two years?? And anybody you know return THEN have to go back on disability??

Just need some input!!!

Thanks ladies!!!

Dx 1/31/2014, IDC, Right, 4cm, Stage IV, metastasized to liver, Grade 3, 1/5 nodes, ER+/PR-, HER2+ (FISH) Chemotherapy 2/27/2014 AC + T (Taxol) Chemotherapy 8/7/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Jun 13, 2018 01:25PM exbrnxgrl wrote:

Hi ladies,

I was originally staged at IIB, but 6 weeks after my bmx, and quite by accident, my bone met was found. I was on medical leave for 3 1/2 months. That was almost 7 years ago and I've been working full time ever since. I teach first grade and am on my feet all day. Yes, I am tired every evening, but I'm in my 60's, so some of it is related to aging. I do have it easy, once I get home, as my children are grown and I live alone save for two dogs. I also get the summer off and a few vacation weeks during the school year. So yes, I happily returned to work (I adore teaching). I'm beginning to think about retirement, but regular retirement, not disability. We are all so different in how we function at stage IV, so for me, feeling relatively well, there is no reason not to work as I'm not disabled. Definitely an individual decision.

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)
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Jun 13, 2018 04:16PM NettaGER wrote:

babyduck: I have just returned to work this monday after having been at home since dx for the last 9 months. I will only go back to work half-time, because I need some rest in the afternoon, because I also have to take care of 2 kids (5 and 7). Since I am living in Germany, things are rather different here wrt disablility and retirement issues. I will apply for half diability pension while being able to work half-time. If progression will not allow me to work any more at some certain point of time (hopefully far in the future), I will be able to apply for full pension then and leave work totally. Currently, I really want to work and have a close to normal life, since I am only 41. I can take medical leaves whenever needed as well.

Dx 8/31/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy 9/15/2017 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 9/15/2017 Ibrance (palbociclib)
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Jun 14, 2018 07:10AM babyduck wrote:

exbrnxgrl.....so glad for you to have been able to work. When I initially left work it was due to running out of sick and vacation. I was Stage III at original dx...it was only 4 mths and it was on my liver then the dbl mx then it kept moving around. So I stayed on chemo and radiation (on and off w/ rads) for three yrs. My LTD strongly encouraged the SSD...... well, now that I've made it.... and things are NED.....I'm VERY ready to work again. I guess my worry is losing any benefits then it return and I have a hard time getting SSD again. I don't want to put my husband in ANY financial strain.....

NettaGER.....half-time would be the best route. I just don't have that option because if I only return half-time then I don't have the option to contribute to LTD with my company....then if something happens and I can't work....No more LTD....I would still have Social Security Disability but that's only half of what I make... LTD makes up the rest....up to 60 percent....

I appreciate you two sharing your situations! AND it just helps to vent.....

I've had clarification that returning to Disability if ever needed....I will have no issues..... BUT....it's a concern if there was a problem....I worked my first 6 mos into dx.....and would have kept on....It wasn't bad. Like I said....I just ran out of time. And as good as work was to me....they could only do so much without backlash.....

I see DR next Wed.....that will tell me alot. And there is a social worker in his office. She might can give me some instances where people returned and what happened if cancer came back.....

Thanks for listening!! I've got to settle this one way or the other....Lately, It's ALWAYS on my mind!

Dx 1/31/2014, IDC, Right, 4cm, Stage IV, metastasized to liver, Grade 3, 1/5 nodes, ER+/PR-, HER2+ (FISH) Chemotherapy 2/27/2014 AC + T (Taxol) Chemotherapy 8/7/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Sep 10, 2018 04:42PM PrincessPincushion wrote:

Something new on the list of Things I Can't Tell Healthy People:

I don't know how to hope any more. I don't know, right now, how to anticipate test results without the certainty that it's going to be the worst possible news. I've had so much bad news over the last year that part of me has just given up. I'm Stage IV, my liver is shutting down, my cancer has mutated, I can hardly breathe, I have no energy and just want to sleep all the time, there is no cure, my doctor ran out of ideas after only two medications, the first of which should have lasted me a couple years at least. Everything hurts all the time, I can't stop crying, I know that the medications and procedures are just going to keep getting worse, and I'm going to end up being one of those horrifying grey skeletons lying in bed struggling for each heartbeat.

I'm crying out to God day and night, reminding myself of His promises, but I feel alone, abandoned, and terrified, knowing that the greatest possibility for the next few months is nothing but a life of increasing pain and a horrific death. And every time I go to take my pills I wonder, Why do I bother?

I don't know how to fight this darkness. I don't know how to do this. I don't know how to go out and be normal.

How do you keep hoping when everything seems hopeless?

Though I walk through the Valley of the Shadow of Death, I will fear NO EVIL, for You are with me. (Psalm 23) *(Formerly AmethystButterfly)* Dx 8/3/2012, IDC, Left, 3cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR+, HER2- Surgery 9/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/6/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2/27/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 3/8/2017 External: Bone Hormonal Therapy 4/17/2017 Femara (letrozole), Zoladex (goserelin) Dx 2/23/2018, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 2/23/2018 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Afinitor (everolimus) Targeted Therapy Ibrance (palbociclib) Radiation Therapy 3DCRT: Breast
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Sep 10, 2018 06:28PM blainejennifer wrote:

Princess PinCushion;

Are you me? Stage 4, Liver fubared, blood clot in lung kept me breathless for far too long, my head is in a bad place, am doing a lot of crying, and the last insult is that Navelbine seems to have done a number on how I eat. I used to be lactose-intolerant, then went fat-intolerant due to a misbehaving gallbladder, and now seem to be gluten-intolerant. Meaning that if I even try to eat anything with gluten in it, I bloat, have the runs, and get big pain in the RUQ. What can I eat? Even if I eat "good stuff", I'm in pain for a few hours.


And, I'm tired. The house is a mess. etc., etc., etc. Can't stop crying. Can't stop hurting. Well, I can stop hurting, but when I took enough pain meds to feel comfortable, I lost the evening, and told a family member deep dark secrets. I don't remember doing that.

On my end, I need to decide which of two clinical trials I will pursue. And maybe some antidepressants, because this isn't living.

Can we help each other? You know, buddy team?

Just barely hanging on today,

Jennifer

ER/PR+, HER2-, Grade 3. Stage 4, July 2012. Currently on Doxil Dx 5/2006, IDC, 4cm, Stage IIB, Grade 3, 4/12 nodes, ER+/PR+, HER2- Dx 3/2012, IDC, Stage IV, 4/12 nodes, ER+/PR+, HER2- Chemotherapy 6/28/2012 Taxol (paclitaxel) Hormonal Therapy 6/5/2013 Faslodex (fulvestrant) Chemotherapy 7/1/2014 Xeloda (capecitabine) Hormonal Therapy 8/14/2015 Femara (letrozole) Chemotherapy 1/31/2016 Halaven (eribulin) Chemotherapy 8/31/2016 CMF Chemotherapy 11/1/2016 Halaven (eribulin)
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Sep 10, 2018 06:46PM PrincessPincushion wrote:

Jennifer,

Sounds like we definitely have a lot in common, except my breathing issues are from malignant pleural effusions in both lungs rather than a blood clot. As for eating, it's not like stuff makes me sick, it's that my stomach is so tight and bloated that it hurts to eat. There's just no room to put food.

We got a second opinion last Friday from an oncologist in Philadelphia. Good oncologist, knows his stuff, directed all the conversation at my DH. Really has no solid ideas of what to do for me that won't further screw up my liver. Have another opinion in Allentown this Friday with another good oncologist. Not sure if I'll get anything different from him. We'll see.

I'm just tired of bad news. It's either sciatica or cancer. Look, it's cancer. The Ibrance should work for at least 3 years. Oh, it failed after 10 months. And it's not gone from being very manageable bone mets to being just a little in the lung and liver, too. PET scan looks mixed. Organs look better, bones look worse, we'll call it positive. And maybe the liver enzymes are just up because of the Afinitor. Nah, we'll go from a tiny spot on the liver to a network of cancer that consumes the entire bloody thing, and enzymes 10x what they should be. Oh, and now we'll have the cancer in the abdominal lymph nodes and almost every single bone.

So now I have to hope for good news, that the HER2 marker will be one that's treatable. *laugh* How do I do that, exactly?

I've never been a bitter woman. I've always been an optimist. But right now... It's just too hard.

I'm trying desperately to hold on to Psalm 27:13, which says, "I would have despaired unless I had believed that I would see the goodness of the LORD In the land of the living." My faith has always been central to my optimism. But it's just so very hard.

I'd be happy to buddy up and try for some mutual hope and encouragement, Jennifer! I'll keep holding on if you will!

PP

Though I walk through the Valley of the Shadow of Death, I will fear NO EVIL, for You are with me. (Psalm 23) *(Formerly AmethystButterfly)* Dx 8/3/2012, IDC, Left, 3cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR+, HER2- Surgery 9/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/6/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2/27/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 3/8/2017 External: Bone Hormonal Therapy 4/17/2017 Femara (letrozole), Zoladex (goserelin) Dx 2/23/2018, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 2/23/2018 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Afinitor (everolimus) Targeted Therapy Ibrance (palbociclib) Radiation Therapy 3DCRT: Breast
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Sep 10, 2018 10:05PM blainejennifer wrote:

Princess -

It used to be that HER2+ was a bad thing. Times have changed. Herceptin came along and changed one's Overall Survival by several standard deviations. Now, it looks like immunotherapy will only truly work on TNBC and HER2+ as those tumors are what is called "hot". Even those of us with no over-expression of HER2 have enough HER2 to benefit from the CART therapies, as they've figured out canny ways to amplify the portion of the HER2 that they need to aim at. That's one of the trials I'm cleared to enter in - if I can afford the travel and out of network care. 18 visits in an 8 month period and a fairly big bag of procedures they want to do on their campus, not mine.

The only reason Judy Perkins got cured at that NIH trial is that while she had ER/PR+, HER2-, she had 67 somatic mutations, and one of the keys happened to fit in her lock. With the same pathology, I have 10. My homework tomorrow is to go through my Foundation One and the published Perkins mutations, and see if there is any overlap. Two other folk got "cured" as well, a bile duct cancer patient, and - I think - a colorectal patient. The Science article might have listed their mutations as well, but I can' remember.

Replace your sciatica, with my lactose intolerance, gluten intolerance and gallbladder issues. I'm getting tired of brown rice and mixed veg, with an egg. If I deviate at all, I'm in real pain RUQ, fatigued, and spend far too much time in the ladies' room. I'm learning how to handle it, but still make mistakes. I'm non-confrontational, but have learned to be that person at a restaurant. The last mistake landed me in the hospital for a night of fluids and pain management.

My SIL had sciatica with her last baby. She's small. her babies were big, and it just trashed her hips. I didn't have enough empathy at the time (had a bad case of young and stupid). As she puts it, it's like lightening ripping down your leg, and you can't get comfortable in any position. She couldn't take any meds because of the baby. I remember her moaning on the sofa, while trying to tend to two toddlers. Man, I need a time machine to go back and help more.

Ibrance/Femara messed up my liver too. I'd been bone only till that protocol.

We need to stay strong. Immunotherapy is showing real promise, not that "five years from now" promise we are so used to. If we are alive when it comes round the bend, we stand a chance of a durable remission, or at least more time without being on a chemo. There are also several articles I've read that postulate that while the immunotherapy might not kick cancer to the curb straightaway, it will increase the utility of the known chemotherapies, and it might even train the body - slowly - to react against cancer antibodies. All in all, more time for us.

Spouse has just chimed in to ask why you haven't done a cytoxic chemo as part of your late stage treatment? I let him ask these cheeky questions, because he is in the business.

Bedtime calls. Had navelbine today, so I will heed that call.

If it's not too invasive, can you talk to me about faith at some point? I had it, then left it. Sometimes I regret that, and other times my scientific secular humanism seems antithetical to faith. Heavy sigh.

ER/PR+, HER2-, Grade 3. Stage 4, July 2012. Currently on Doxil Dx 5/2006, IDC, 4cm, Stage IIB, Grade 3, 4/12 nodes, ER+/PR+, HER2- Dx 3/2012, IDC, Stage IV, 4/12 nodes, ER+/PR+, HER2- Chemotherapy 6/28/2012 Taxol (paclitaxel) Hormonal Therapy 6/5/2013 Faslodex (fulvestrant) Chemotherapy 7/1/2014 Xeloda (capecitabine) Hormonal Therapy 8/14/2015 Femara (letrozole) Chemotherapy 1/31/2016 Halaven (eribulin) Chemotherapy 8/31/2016 CMF Chemotherapy 11/1/2016 Halaven (eribulin)
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Sep 11, 2018 09:57PM PrincessPincushion wrote:

Jennifer,

This miserable disease sure does put us through the wringer, doesn't it?

As for why I haven't done the cytoxic chemo... well, it hasn't been suggested up to now. We just had a consult with dr #2, and this Friday we have a consult with dr #3. But we still don't know the HER2 marker. If the cancer doesn't kill me, the waiting surely will!

I will be happy to talk about faith with you. It's not invasive at all, and it's truly the thing that has gotten me through more tragedies than I could number. More than anything, I think my faith is what makes me who I am... Yes, even in these dark days when I struggle to find it, when I wrestle to find hope in the middle of despair. Even then, my faith is there, calling me to One who I believe is holding me and has good things for me, whether that's being healed here, or whether it's going Home forever. My natural self fights this, but my soul knows.

If you have specific questions, please feel free to private message me. I'm always here, and I'd love to chat.

PP

Though I walk through the Valley of the Shadow of Death, I will fear NO EVIL, for You are with me. (Psalm 23) *(Formerly AmethystButterfly)* Dx 8/3/2012, IDC, Left, 3cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR+, HER2- Surgery 9/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/6/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2/27/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 3/8/2017 External: Bone Hormonal Therapy 4/17/2017 Femara (letrozole), Zoladex (goserelin) Dx 2/23/2018, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Hormonal Therapy 2/23/2018 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Afinitor (everolimus) Targeted Therapy Ibrance (palbociclib) Radiation Therapy 3DCRT: Breast
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Sep 11, 2018 10:27PM finallyoverit wrote:

I only told immediate family members.. however, I recently found out that my trust has been betrayed. I am so freaking angry, I can’t see straight. That said, be careful what and who you tell. From this point forward, the only information I will be sharing is when I (hopefully in many years) go on hospice. Until then, f them. They’ve proven they can’t be trusted, so they will no longer be privy to ANY info. Perio

Dx 10/2011, IDC, Stage IIA, 0/4 nodes, ER+/PR+, HER2- Dx 5/2017, Stage IV, metastasized to bone

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