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Topic: Mets Members: Could you share your insight?

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.

Posted on: Jun 22, 2017 08:57PM

Moderators wrote:

Are there instances when you rely on a source of inspiration or a strategy for motivation to help you to get through times of struggle when living with stage IV disease? If so would you be willing to share what you do?

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Posts 31 - 48 (48 total)

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Aug 24, 2017 05:10AM Leapfrog wrote:

Jaycee49, I like your approach. It's very similar to mine and, at the moment at least, it's working for me.

vrtameshrew, I hope you're feeling a little bit better, my love. Maybe your children can't stand to see you in pain, which is why they've turned away but that is of NO comfort to you, I know that, and it's no excuse for them to be doing that. All I can offer is for you to stay with us on this thread and keep us informed about how you are. It would be good if you checked in each day so that we can support you and offer our love and comfort.

Hi JVF, how are you? Sending a hug your way.


Heart

Find your joy Dx 10/15/2016, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to bone, Grade 3, 29/29 nodes, ER+/PR+, HER2- (IHC) Surgery 11/1/2016 Mastectomy: Left, Right Hormonal Therapy 12/10/2016 Femara (letrozole) Targeted Therapy 1/15/2017 Ibrance (palbociclib)
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Aug 24, 2017 05:26AM Beatmon wrote:

I worked very hard days, evenings and nights as a nurse my whole adult life...and this is what I ended up with? It is very discouraging. I do have helpful friends and loving family so I am very blessed that way. But please, give me some energy

Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/8/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 11/30/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/30/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/26/2014 Herceptin (trastuzumab) Targeted Therapy 8/26/2014 Perjeta (pertuzumab) Chemotherapy 8/26/2014 Taxotere (docetaxel)
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Aug 24, 2017 10:52AM Leapfrog wrote:

Hi Beatmon, I'm so sorry you're feeling down. It's a horrible place to be and we've all been there in that dark place from time to time and, for me anyway, when I am I can't believe I'll ever feel happy again. But somehow I do bounce back because of the love of my husband and grown up son. I don't have any extended family so the three of us have had to work together on this without any help but, ten months on, we do find joy in life again, we do laugh and joke and most of the time now I feel totally optimistic. I hold onto that optimism. It's my lifeline.

I don't know whether you've read the previous posts on this thread but I posted my coping strategies on the previous page. If you'd like to read it, it might help you at times like this.

I'm glad you've reached out for help to get you through this spell because we're all here for each other. I always keep a picture in my mind of us all holding each other up as we deal with our own individual situations, not alone but together as friends, united in our wish to support each other.

Sending a gentle, loving hug.......Heart

Find your joy Dx 10/15/2016, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to bone, Grade 3, 29/29 nodes, ER+/PR+, HER2- (IHC) Surgery 11/1/2016 Mastectomy: Left, Right Hormonal Therapy 12/10/2016 Femara (letrozole) Targeted Therapy 1/15/2017 Ibrance (palbociclib)
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Aug 25, 2017 05:20PM JFV wrote:

Thanks Leapfrog. I had a few lovely, active days with family and friends. Then I Caught a mild virus this week which has laid me flat. Coping by watching old movies. I will be starting Government disability pay in a few months. My work was very part time but I will miss it. I plan on signing up for classes and activities at my local library

Dx 3/18/2010, ILC, 3cm, Stage IIIA, Grade 3, 5/17 nodes, ER+/PR+, HER2- Surgery 4/19/2010 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 6/14/2010 AC + T (Taxol) Hormonal Therapy 9/30/2010 Aromasin (exemestane) Radiation Therapy 9/30/2010 Breast, Lymph nodes Dx 4/2017, Stage IV, metastasized to bone, ER+/PR-, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Aug 26, 2017 04:35AM Leapfrog wrote:

Hi JFV it's great that you had those active days. I've worked out which week of my treatment cycle with Ibrance is a good week, before the fatigue sets in and it happens to be this week so I'm enjoying pottering around the house, tidying it up, as well as trying to build up my strength in the hope I can hold off the fatigue when it drops my blood levels and drops me as well! We have to grab at those precious days when we feel good enough to do the things we enjoy, then when things like your virus happen we have the good days to look back on. I love the way you're planning classes and activities! Good for you. Enjoy them Heart

Hi vrtameshrew48 are you feeling any better? Heart

Beatmon sending you another hug. Hope things are looking less bleak today Heart

Find your joy Dx 10/15/2016, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to bone, Grade 3, 29/29 nodes, ER+/PR+, HER2- (IHC) Surgery 11/1/2016 Mastectomy: Left, Right Hormonal Therapy 12/10/2016 Femara (letrozole) Targeted Therapy 1/15/2017 Ibrance (palbociclib)
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Aug 28, 2017 04:49AM Leapfrog wrote:

Beatmon I'm concerned there hasn't been any more contact from you. I've been sending you positive energy anyway in the hope it will help lift you up. Are you ok? Heart

Find your joy Dx 10/15/2016, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to bone, Grade 3, 29/29 nodes, ER+/PR+, HER2- (IHC) Surgery 11/1/2016 Mastectomy: Left, Right Hormonal Therapy 12/10/2016 Femara (letrozole) Targeted Therapy 1/15/2017 Ibrance (palbociclib)
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Aug 28, 2017 04:59AM Leapfrog wrote:

Sadiesservant, I LOVE your attitude. Your thinking mirrors mine. People tell me that if they were in my situation they wouldn't be able to handle it with as much poise and grace as I have and I tell them there's a clear choice: complain, cry, worry, keep hitting my head on the wall, be unhappy and spread unhappiness around me like a virus OR I can decide to just take my treatment, turn up for appointments and scans without worrying about it too much, find happiness in little things every day and try to spread happiness around me......because, after all, the environment I create is the environment my family and I will live in.

Hugs to everyone Heart

Find your joy Dx 10/15/2016, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to bone, Grade 3, 29/29 nodes, ER+/PR+, HER2- (IHC) Surgery 11/1/2016 Mastectomy: Left, Right Hormonal Therapy 12/10/2016 Femara (letrozole) Targeted Therapy 1/15/2017 Ibrance (palbociclib)
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Nov 3, 2017 10:56AM Jeenee wrote:

I try to exercise my sense of humor. Each morning, I join a text conversation with friends and share some jokes/memes from the internet to wake each other up! Sometimes I am the first one up because of pain but I look forward to the interaction.

My teen daughter and my husband keep me going. My daughter is disabled and has needed me to advocate for her. Having that job and also needing to provide her with nurturing support is my lifeline and gives me the courage to do whatever I need to do. I feel so blessed to see her reach milestones in her life and grow more independent.

I have been doing this for a long time. It's getting a little bumpier and scarier now. But, with experience, it seems to be easier to make choices I feel good about, and keep feeling as if I have a future ahead of me.

Love and peace to all.

JeeNee




Dx 8/2003, IDC, Stage IIA, ER+/PR+, HER2- Surgery 8/22/2003 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 7/2007, IDC, Stage IV, metastasized to bone, ER+/PR+ Targeted Therapy 12/18/2015 Kisqali Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Aromasin (exemestane) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Faslodex (fulvestrant) Chemotherapy Xeloda (capecitabine) Radiation Therapy External: Bone Chemotherapy AC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Radiation Therapy External: Bone Surgery Radiation Therapy External: Bone Chemotherapy Halaven (eribulin)
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Jan 11, 2018 06:05AM Jldavies44 wrote:

Love horses! They are my saving grace through 12 years of breast cancer. What kind do you have

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Feb 25, 2018 05:38PM mimi791 wrote:

hi:

I am recently diagnosed with bone mets one in my left arm which broke and precipitated this new chapter.... and I also have a couple in my lumbar spine. You’re insights are inspiring... I have a ? About pain control. I have a constant backache. This is a new feeling complicated by the fact that I’m recovering from a tumor removal limiting motion of my right shoulder and fracture repair on the left so I’m like a T-Rex, all abs and quads for getting in and out of bed, no arm help. We just migrated me from dilaudid to 25 mcs of fentanyl. It did cut the pain down to about a 4. I’m walking every day and healing well from the arm surgery. I’m only 48 and have a horse and 2 dogs and the fresh air and pet hair are my coping mechanism in addition to Audible and online gaming when it’s a 6 or more and I have to do another med. is that par for course with pain, or can I hope for something better with bisphosphinates and/or pain meds once I get rolling after the med onc visit next week?

Thank you for peeking up my morning 🙂

Mim



Dx 5/1/2009, IDC, Right, 5cm, Stage IIIA, metastasized to bone/liver, Grade 3, 4/30 nodes, ER+/PR+, HER2+ (FISH) Surgery 7/7/2009 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 8/11/2009 AC + T (Taxol) Hormonal Therapy 2/5/2010 Radiation Therapy 2/19/2010 3DCRT: Breast, Lymph nodes Targeted Therapy 10/1/2010 Herceptin (trastuzumab) Surgery 12/13/2010 Reconstruction (left) Surgery 11/28/2012 Reconstruction (right): Latissimus dorsi flap
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Sep 18, 2018 07:03AM chef47 wrote:

my relationship with God of course and good encouraging preaching on tv or a good book. I also look for others who have overcome and love hearing there stories, they give us so much hope. If you want to go downhill fast get on google if you want to be lifted up fast get on breastcancer.org, connect and look for the real live women and men who have outlived the expectations, there are so many. They definitely taught me that I could live and be productive thru this! Thank you so much

Dx 2/14/2013, IDC, 1cm, Stage IIIA, Grade 2, 9/13 nodes, ER+/PR-, HER2- Surgery 3/7/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap Surgery 1/30/2018 Dx 1/31/2018, DCIS/IDC, 2cm, Stage IV, metastasized to bone/liver/lungs, Grade 2, 9/13 nodes, ER+/PR+, HER2- Chemotherapy 5/14/2018 Taxol (paclitaxel) Chemotherapy 9/19/2018 Doxil (doxorubicin) Radiation Therapy Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy TAC Chemotherapy Doxil (doxorubicin), Taxol (paclitaxel)
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Jan 16, 2019 03:45AM tina_marie wrote:

Hi Ladies,

I was asked to speak at a Celebrate Recovery group at my church. I shared my cancer journey and also encouraged through 4 parts of the Serenity Prayer. I hope you enjoy this:

Tina Parsley - Sharing my story

This was filmed on a mobile phone so you will need to turn your speakers up or use ear phones.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” Dx 7/7/2017, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 3, ER-/PR-, HER2- (IHC) Surgery 8/24/2017 Chemotherapy 9/26/2017 Dx 10/1/2017, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 3, ER-/PR-, HER2- Targeted Therapy 11/1/2017 Chemotherapy 11/19/2018 AC + T (Taxol) Chemotherapy 4/16/2019 Doxil (doxorubicin) Hormonal Therapy
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Jan 22, 2019 05:58AM princessfluffybritches wrote:

I think the people here are my inspiration along with 20 pet chickens and a horse. I picked up and moved near my daughter and family. She's kind of bossy so she doesn't let me become a couch potato.

Chickens are great inspiration. It's just amazing how very little makes them happy. It's a good reminder when life gets me stressed.

Surgery 7/12/2018 Targeted Therapy 7/13/2018 Ibrance (palbociclib) Hormonal Therapy 7/13/2018 Femara (letrozole) Dx 7/21/2018, ILC, Left, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2-
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Jan 27, 2019 12:03AM Ailurophile wrote:

is there anyone here with Mets in liver who can share positive stories ? I am 42, first diagnosed in 2013 with stage 2A no lymph involved. currently have Mets in liver and infraclavicular area .while I am going to get 2nd and maybe 3rd opinion, I won't stop my treatments with my old medical team.plan is to do a hysterectomy then start fermara and Verzenio.(tumor is 95 percent hormone receptor) Anyone here similar to my situation? Btw beside fermara and verzenio I will be participating in a research with one more oral medication added to that regimen (don't know the name and have no idea yet that If it is a placebo base research or not) .would you please share your experience with verzenio? I heard about sever diarrhea and the bone pain and stiffness. I do not mind any of that if it gives me the chance to be by my 10 years old and see her graduating from high school😉

Dx 7/2013, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 9/16/2013 Mastectomy: Left, Right Dx 1/2019, Stage IV, metastasized to liver/other, Grade 2, ER+, HER2- Surgery 2/4/2019 Prophylactic ovary removal
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Jan 29, 2019 01:15PM tina_marie wrote:

Allurophile, I have triple negative breast cancer... and had have mets to the live since june 2018... I am really doing well.. oral chemo did not work for me, so I was put on AC and now Taxol weekly... In October... 2 small lesions were gone the 2 larger ones finally stopped growing.. i have my next scans next week but my tumor markers have gone from 1438 in October to 398 last week. I am hopeful for my scans..

But most of all you can hear my story, and how I get through, follow the link I posted about 3 posts ago.

Tina Parsley - Sharing my story

This was filmed on a mobile phone so you will need to turn your speakers up or use ear phones.

Keep us posted on how you do.


“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” Dx 7/7/2017, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 3, ER-/PR-, HER2- (IHC) Surgery 8/24/2017 Chemotherapy 9/26/2017 Dx 10/1/2017, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 3, ER-/PR-, HER2- Targeted Therapy 11/1/2017 Chemotherapy 11/19/2018 AC + T (Taxol) Chemotherapy 4/16/2019 Doxil (doxorubicin) Hormonal Therapy
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Jan 29, 2019 11:01PM Leapfrog wrote:

Tina Marie...... I haven't been visiting the discussion boards lately but I receive emails when my favourite topics are updated and I have just read your post. I just had to pop in to tell you how delighted I am to read your news! I will be thinking of you and hoping your next scan brings the news you're hoping for. Hugs.

Find your joy Dx 10/15/2016, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to bone, Grade 3, 29/29 nodes, ER+/PR+, HER2- (IHC) Surgery 11/1/2016 Mastectomy: Left, Right Hormonal Therapy 12/10/2016 Femara (letrozole) Targeted Therapy 1/15/2017 Ibrance (palbociclib)
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Jan 30, 2019 01:08PM tina_marie wrote:

Thank you LeapFrog!!


“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” Dx 7/7/2017, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 3, ER-/PR-, HER2- (IHC) Surgery 8/24/2017 Chemotherapy 9/26/2017 Dx 10/1/2017, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 3, ER-/PR-, HER2- Targeted Therapy 11/1/2017 Chemotherapy 11/19/2018 AC + T (Taxol) Chemotherapy 4/16/2019 Doxil (doxorubicin) Hormonal Therapy
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Jan 30, 2019 08:32PM Ailurophile wrote:

Tina

I just watched your video and I love it! Thank you so much for sharing it with me. I am so glad that your tumor markers dropped and want to wish you the best possible outcome that one with our conditions can get. Miracles do happen. It's been couple of days that I emotionally feel better and I am trying to accept the new me with my stage 4. I am looking forward to start my treatments by the end of Feb and be in the right path.I will keep you posted and I hope that letrozole+verzenio works for me. If not may the lord open a new door to me so I can stay by my daughter as long as possible.

-with Lots of love and respect💗

Dx 7/2013, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 9/16/2013 Mastectomy: Left, Right Dx 1/2019, Stage IV, metastasized to liver/other, Grade 2, ER+, HER2- Surgery 2/4/2019 Prophylactic ovary removal

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