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 04:09PM - edited Oct 29, 2021 03:22AM by moderators

Posted on: Jun 22, 2012 04:09PM - edited Oct 29, 2021 03:22AM 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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Sep 25, 2015 02:05AM bluefrog76 wrote:

Has anyone else had to postpone their Xgeva injection because of low calcium levels? I was told to take a supplement, but need to wait until my next chemo infusion to get the shot. This only would have been Xgeva #2.

Rachel, diagnosed stage IV out of the gate at 38 in August 2015 after 2 fractured vertebrae revealed bone metastases. Mom of an 8 and 10-year-old. Dx 8/4/2015, Both breasts, 4cm, Stage IV, ER+/PR+, HER2- Targeted Therapy 8/13/2015 Perjeta (pertuzumab) Chemotherapy 8/13/2015 Taxotere (docetaxel) Targeted Therapy 8/13/2015 Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 25, 2015 03:15AM cjanet wrote:

((hugs)) and support to everyone who needs them today.

Dune, glad to see you again.

I'm having an on/off day with anxiety, which helps nothing. I'm getting nervous about finances. My hubby is doing real estate but it's simply not enough money compared to what he used to make. This is what he wants to do. I am asking him to get a second job to help with the cut in income and he's really dragging his feet. He's been a little more proactive in the past week. Please keep me in your thoughts and hope that he gets anything, even just a part time to supplement the income. He needs to be the provider, not me w my cancer, it's too much for me! Well just had to get that out! Hopefully some good will come in the nest few weeks and a job will be found that he can enjoy and will help w finances.

I'm glad to have you guys to vent to, I don't know where I'd be without the support. It is so scary and it helps having this online group.

Cristina Dx 2/16/2012, IDC, 5cm, Stage IIA, 1/4 nodes, ER+/PR+, HER2- Chemotherapy 3/20/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 6/16/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/2/2013 Reconstruction (left); Reconstruction (right) Hormonal Therapy 10/14/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/23/2015 External: Bone Hormonal Therapy 5/7/2015 Arimidex (anastrozole) Hormonal Therapy 8/5/2015 Faslodex (fulvestrant) Targeted Therapy 8/8/2015 Ibrance (palbociclib) Chemotherapy 5/31/2016 Xeloda (capecitabine) Chemotherapy 7/28/2016 Carboplatin (Paraplatin), Gemzar (gemcitabine) Radiation Therapy Breast, Lymph nodes
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Sep 25, 2015 03:22AM GoldenGirls wrote:

My mother just got some news and I am hoping others might have some input to share. She's had several scans in the last 6 months because of pain that comes and goes. None showed progression. Two MRIs were ordered to get a better look at the pelvis where her pain is focused and a possible sacral fracture was found, but no progression was indicated. A CT was ordered to compare and get a better look and she went in for results today. She was told that the bone that connects her leg to her hip (sorry, her English is bad so this was the best she was able to explain it) has collapsed and is probably what's causing the pain. Her onc then told her that even though scans show no progression, he will take her off her current treatment and switch her to something new after she has radiation for the pain. He said that even though the scans don't show progression, he feels that the cancer must be progressing if her bone became weak enough to collapse.

They don't do PETs here and I know that CTs, MRIs, and bone scans can not accurately assess the size of bone mets, but taking her off an easy treatment that may be keeping her stable seems premature to me. I'm sure I have read about others on here who have gone on to break a bone while stable.

Has anyone had experience with this?

Mom was originally dx in 10/2001. Mets to bones and 2 supraclavicular nodes in 01/2013. She passed away from complications from bone metastases Dec 2016.
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Sep 25, 2015 04:55AM - edited Sep 25, 2015 04:56AM by 50sgirl

See everyone, This is such an active thread it is tough to keep up.

Marilyn, I am happy you are stable.

Annie, keeping good thoughts for you that scan results will be great.

Gaia, sorry you are having such a difficult time. I hope you get answers and tx plan soon.

Rachel, I agree with everyone else here. It is important for you to go to your onc appt. You need to discuss current condition and symptoms so you can have the correct treatment plan. I know it is easy sometimes to throw up your arms and give up, but I firmly believe that there are still treatment options out there for you that will make you feel better. Maybe you should also talk to a therapist who can help you deal with everything that is happening. I am sure that it feels like things are falling in on top of you. It is scary for everyone.

Deanna- I hope things go well at UCLA. Tooth extractions are never fun.

Cristina, hugs to you. Feel free to vent anytime.

This has not been my best week. I have had an achy hip and achy legs for four days. I am hoping it is because I overdid things, increasing my walk too quickly from two miles a day to four. Really, I think I should be able to do four miles. Ugh! Unfortunately, the achy reminds me of the way my hip and legs felt last spring before the pain spread and worsened. I am trying to be positive - maybe too much activity, maybe pain from healing, maybe she from Arimidex, maybe a virus. See, I really do read this thread. Anyway, today I also have terrible nausea. I know many of you can relate to that. I am thinking it is a virus or nerves. I am scheduled for blood test, onc appt and first Zometa infusion on Tuesday. Hey, maybe the pain and nausea are just dress rehearsal for that infusion.

I hope everyone has a good night.

Lynne

Dx 6/5/2015, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 6/10/2015 Arimidex (anastrozole) Dx 8/9/2016, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone/liver/other, 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) Chemotherapy 10/2/2018 Xeloda (capecitabine) Chemotherapy 2/11/2019 Taxol (paclitaxel) Hormonal Therapy 11/12/2019 Aromasin (exemestane) Targeted Therapy 11/13/2019 Afinitor (everolimus) Hormonal Therapy 12/27/2019 Femara (letrozole) Chemotherapy 3/8/2020 Adriamycin (doxorubicin) Targeted Therapy 2/6/2021 Verzenio Chemotherapy 4/13/2021 Halaven (eribulin) Chemotherapy 9/30/2021 Cytoxan (cyclophosphamide), Methotrexate (Amethopterin, Mexate, Folex) Chemotherapy 2/11/2022 translation missing: en.treatments.chemotherapy.chemotherapy_regimen.options.short_drugs.epithilone.ixempra
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Sep 25, 2015 05:26AM txmom wrote:

Rachel, I have had my husband tell me results of tests rather than Drs. Sometimes it's better coming from someone that loves you.

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Sep 25, 2015 05:41AM - edited Sep 25, 2015 05:51AM by AmyQ

Well crap, shit and fudge - PET/CT show significant increase in metabolic activity throughout my spine, ribs, hips, shoulders, etc., places previously dx but now active again. I have an appointment already scheduled next week to figure out a new plan. I'm really stunned, sad, disappointed and tearful but the good news is it's not in my organs so I have a lot to be thankful for.

Shit shit shit -

Amy

Dx 2/7/2013, IDC, 1cm, Stage IV, Grade 2, 2/3 nodes, mets, ER+/PR+, HER2- Chemotherapy 4/9/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/19/2013 Femara (letrozole) Radiation Therapy 11/25/2015 External: Bone Hormonal Therapy 1/10/2016 Faslodex (fulvestrant)
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Sep 25, 2015 05:48AM 50sgirl wrote:

oh Amy, that really stinks. At least you can see the good side of things - that it is just in your bones. I am sure things will seem even better once you have your new plan in place. Sending hugs your way.

Lynne

Dx 6/5/2015, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 6/10/2015 Arimidex (anastrozole) Dx 8/9/2016, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone/liver/other, 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) Chemotherapy 10/2/2018 Xeloda (capecitabine) Chemotherapy 2/11/2019 Taxol (paclitaxel) Hormonal Therapy 11/12/2019 Aromasin (exemestane) Targeted Therapy 11/13/2019 Afinitor (everolimus) Hormonal Therapy 12/27/2019 Femara (letrozole) Chemotherapy 3/8/2020 Adriamycin (doxorubicin) Targeted Therapy 2/6/2021 Verzenio Chemotherapy 4/13/2021 Halaven (eribulin) Chemotherapy 9/30/2021 Cytoxan (cyclophosphamide), Methotrexate (Amethopterin, Mexate, Folex) Chemotherapy 2/11/2022 translation missing: en.treatments.chemotherapy.chemotherapy_regimen.options.short_drugs.epithilone.ixempra
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Sep 25, 2015 05:50AM LindaE54 wrote:

Deanna - Holding your hand in spirit and hoping all goes well and painless.

Rachel - You did not deserve this and it is not your fault! You have to go tomorrow - bring hubby for support and a second pair of ears. It's not easy to get an accurate biopsy from bone. I'm visualising good scan results for you. You've been through a lot lately - be kind to yourself. Sending you big virtual hugs. You can do this and we will be holding your hand in spirit tomorrow.

Bluefrog - If calcium is too low, you can't get the tx because it will further lessen the calcium. I have no experience with too low, mine are always too high and I don't supplement.

Cristina - vent away. Praying a new job comes along. Are you on disability or is it an option for you?

Goldengirls - I'm not sure what you mean by collapsed bone. Do you mean a fracture (aside from sacral area)? Could it be the femur? Did Onc suggest rads? I see your Mom is getting bi-monthly Zometa. Perhaps a switch to Xgeva? Sorry, I'm not being much help but not sure I fully understand. I don't know if Xeloda has a negative impact on bone density - perhaps someone has an answer. What would be the next tx?

Lynne - Sorry you're in so much pain. You may be increasing your walking too quickly. I got back in a walking mode lately, pushed myself a bit too much and have had increasing pain. It's not the first time I do this, I guess I may be a bit too stubborn. Anyway, I reduced the walking a bit, just enough to feel comfortable enough. Prior to dx, I used to walk 6 kms in the forest almost every day, sigh. Good luck with Onc appt and and Zometa. You will probably notice less pain once you start Zometa.

Annie - good shopping today?

Myra - how are you?

Sharon08 - been thinking of you lately. My hands are getting more painful and stiff.

Dune - I made it to Brownsville... Any news re the mark on your hand?

Well, I finally feel my normal self for the past couple of days. Feeling much better in fact. Have not heard from my nurse as to whether we would switch from Aredia to Xgeva, so infusion next week. Gosh it took me time to recover from that messed up infusion. BUT, I will make sure it is done properly this time, the control freak in me is waking up...

Linda - dx at 54. Decision to stop all treatments on 9 Jan 2018 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/liver/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/19/2013 External: Bone Hormonal Therapy 12/30/2013 Femara (letrozole) Hormonal Therapy 5/28/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/29/2014 External: Bone Radiation Therapy 8/28/2014 External: Bone Hormonal Therapy 9/25/2014 Femara (letrozole) Radiation Therapy 12/14/2014 External: Bone Hormonal Therapy 2/17/2017 Faslodex (fulvestrant) Chemotherapy 5/15/2017 Taxol (paclitaxel) Radiation Therapy 6/5/2017 External: Bone Chemotherapy 10/3/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
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Sep 25, 2015 05:54AM LindaE54 wrote:

Amy, shit, shit, shit. So sorry. Praying next tx stops everything in its tracks. Good news on no organ involvement though.

Linda - dx at 54. Decision to stop all treatments on 9 Jan 2018 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/liver/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/19/2013 External: Bone Hormonal Therapy 12/30/2013 Femara (letrozole) Hormonal Therapy 5/28/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/29/2014 External: Bone Radiation Therapy 8/28/2014 External: Bone Hormonal Therapy 9/25/2014 Femara (letrozole) Radiation Therapy 12/14/2014 External: Bone Hormonal Therapy 2/17/2017 Faslodex (fulvestrant) Chemotherapy 5/15/2017 Taxol (paclitaxel) Radiation Therapy 6/5/2017 External: Bone Chemotherapy 10/3/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
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Sep 25, 2015 06:14AM Xavo wrote:

Amy, indeed, cramp, shit, and fudge on the bad news! You have been doing fabulously with a short chemo and on Femara for two years, right? No wonder you are very disappointed. I would be. The doctors tend to think Femara most likely works from 6 months to 2 years. My onc would be thrilled if Femara would work for me for 2 years. And also indeed, that the mets is still confined in the bones is a very good news! So the new reality you are facing now is Femara became less effective, which allowed the mets to be a little more active. Next treatment will be in place soon and the mets will be knocked back immediately after, because you have responded to your treatments very well before, you should be able to continue responding well. Hang in there! Wish you NED again soon!


Dx 12/2002, IDC, Left, 4cm, Stage IIB, Grade 3, 5/12 nodes, ER-/PR-, HER2- Surgery 1/2/2003 Mastectomy: Left Dx 2/27/2015, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Chemotherapy AC Radiation Therapy Chest wall

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