Topic: Bone Mets Thread

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 IV or Mets.

Posted on: Jun 22, 2012 01:09AM - edited Oct 28, 2021 12:22PM by moderators

Posted on: Jun 22, 2012 01:09AM - edited Oct 28, 2021 12:22PM by moderators

Jac53 wrote:

I've started this thread after suggestions that it would be useful.

Mod Note: We have removed the original link as it is no longer viable. At one of our member's' recommendation we are offering this link as a resource for you.

https://youtu.be/YpFfLrITfEI


Jeannie. "You only live once, but if you do it right, once is enough." Dx 6/19/1995, 10/15 nodes Dx 2/18/2011, Stage IV, mets, ER+/PR+, HER2- Dx 7/2/2012, Stage IV, mets, ER+/PR+, HER2-
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Jun 12, 2022 05:17PM bevjen wrote:

KBL,

Have you had a bone scan lately? With the amount of pain you are describing, I would not engage in any exercise without having some testing. You could do a bone scan or a skeletal survey (different test, x ray based). Or you could ask your MO about seeing an orthopedic oncologist.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Radiation Therapy for Bone Mets to Femur (Both sides) April 2021 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Radiation Therapy Surgery Lymph node removal; Lymph node removal (Left): Sentinel; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Jun 13, 2022 04:06AM kbl wrote:

BevJen, I haven’t had a bone scan since 2016. It doesn’t show any of my cancer, just a little arthritis in my feet. Do you think I should get one even if it won’t show the cancer? It basically said my back was good. Thank you, lobular, for not showing the full picture. Ugh.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Missed diagnosis from 2013 to 2019 Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy 5/1/2019 Ibrance (palbociclib) Hormonal Therapy 5/1/2019 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)
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Jun 13, 2022 05:59AM bevjen wrote:

KBL,

I've noticed that over the past few weeks, you've complained about various things. I would not ignore these things. And 2016 is a long time ago. It took some very skilled radiologists last year to identify my impending fracture on both of my femurs, but they would have broken through.

It's not my call, but I'd at least check in with my oncologist and see what he/she says. You've also described other things going on with you that I think at least call for a consult.

Good luck.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Radiation Therapy for Bone Mets to Femur (Both sides) April 2021 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Radiation Therapy Surgery Lymph node removal; Lymph node removal (Left): Sentinel; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Jun 13, 2022 08:44AM sunshine99 wrote:

KBL, I would agree on at least asking about the bone scan (nuclear med.) Before my MBC diagnosis, I was having some rib pain. I saw my MO, who happened to be new, since my old one retired. I went to see her and told her I wasn't an alarmist, and that I didn't run to the doctor with every little pain, but that this pain was different.

She ordered a bone scan and it showed "something" on my rib. I was supposed to follow up in six months, but I never did. That part is CLEARLY noted in my chart.

Anyway, fast forward about four years (I can't remember exactly) and in the subsequent tests following my MBC diagnosis, it showed cancer in that rib.

I hesitated to write this, because I don't want to cause you any additional worry, but I'm just saying that it's worth getting checked. I hope it's nothing or "just" arthritis.

(((hugs)))

Carol

my-sunny-side-up.com Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External Local Metastases 5/5/2020 Radiation therapy: Bone Radiation Therapy 5/12/2020 External Local Metastases 5/12/2020 Radiation therapy: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Jun 13, 2022 10:42AM - edited Jun 13, 2022 10:43AM by kbl

Thank you. I called oncologist's office. Nurse will talk with doc and let me know.


Hugs back, Sunshine.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Missed diagnosis from 2013 to 2019 Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy 5/1/2019 Ibrance (palbociclib) Hormonal Therapy 5/1/2019 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)
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Jun 13, 2022 10:55AM sadiesservant wrote:

Hi kbl. I agree with the others about getting it checked but am with you on the bone scans. My cancer is not lobular but slow growing and bone scans are useless for me. My RO told me my bone scan could be hers… looks pretty normal but a CT? Oy vey… mets all over. Hope you get it checked and some answers.

Bevjen, did you look at the scan results yet?

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/11/2001 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/8/2001 CEF Radiation Therapy 12/17/2001 Whole breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/29/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/21/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External Local Metastases 11/15/2017 Radiation therapy: Bone Hormonal Therapy 1/19/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External Local Metastases 8/2/2018 Radiation therapy: Bone Radiation Therapy 11/5/2018 External Local Metastases 11/5/2018 Radiation therapy: Bone Targeted Therapy 10/10/2019 Verzenio Radiation Therapy 11/3/2020 External Local Metastases 11/3/2020 Radiation therapy: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Other Chemotherapy 1/7/2022 Other
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Jun 13, 2022 11:46AM bevjen wrote:

sadiesservant

I did look at my scan results. I had a zometa infusion last Thursday, and my bloodwork popped up in my patient portal, so I decided -- what the heck. The results were basically stable with a little bit of change regarding fluid. I have a Telehealth appointment with my MO tomorrow. Right now, my bigger issue is whether or not I can change therapies. My doc wants me to go onto enhertu, but I am not technically HER2 low -- my chart reads HER2 0, but I have two ERbb2 mutations so she's checking whether I can get the drug. I have been on neratinib for about a year, and I am having some issues with side effects that are getting worse, so we need to do something.

Thanks for checking. Yes, I am a chicken sometimes.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Radiation Therapy for Bone Mets to Femur (Both sides) April 2021 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Radiation Therapy Surgery Lymph node removal; Lymph node removal (Left): Sentinel; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Jun 13, 2022 03:27PM divinemrsm wrote:

Kbl, I started doing water aerobics at the Y last fall, just one day a week. If you have a YMCA near you, check what exercise classes they have. You can try a few out to see what you think. Mine offers a nice variety and I love that its covered by Silver Sneakers. I’m not a yoga person either. I go to line dance class once a week at a Senior Center and love it. Our teacher is 82 years old, not an ounce of fat on her and she can outdance the rest of us.

I don’t go to lose weight, I go to stay active and for the social aspect. Btw, you said your falls aren’t because of balance issues, but practicing a few balance exercises from time to time is never a bad idea. I started doing some earlier this year; they’re simple and don’t take long to do. Many youtube videos to choose from, here’s one I like:



found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Jun 13, 2022 03:49PM sunshine99 wrote:

Isn't it frustrating that one test can show NOTHING and another test shows that we're full of cancer???

Sheesh!

Carol

my-sunny-side-up.com Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External Local Metastases 5/5/2020 Radiation therapy: Bone Radiation Therapy 5/12/2020 External Local Metastases 5/12/2020 Radiation therapy: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Jun 13, 2022 04:44PM - edited Jun 13, 2022 04:46PM by kbl

BevJen, I'm so glad it's stable and hope you can get a different therapy that doesn't have as many side effects.

Sadiesservant, that's me with PET scan and CT, they both show not an ounce of cancer. MRI, I'm loaded. It's ridiculous.

Sunshine, it's so frustrating that they can show completely different things.

Divine, I called the Y today. I just have to go in and make sure I'm eligible. I thought it was just good for Silver Sneakers, but she said I could use the whole gym. Really??? I believe they have a pool. I will check it out once I'm given the all clear.

I talked to my onc's nurse. They are going to send me the name of a neurosurgeon to get a consult. It's not to have surgery but to make sure whatever I do is safe. I agree I need to start moving again but safely.

Thank you all.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Missed diagnosis from 2013 to 2019 Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy 5/1/2019 Ibrance (palbociclib) Hormonal Therapy 5/1/2019 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)

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