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 03:09AM - edited Oct 28, 2021 02:22PM by moderators

Posted on: Jun 22, 2012 03:09AM - edited Oct 28, 2021 02:22PM 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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May 23, 2022 05:36PM rosie24 wrote:

Emac, I’m not naturally an assertive person with medical people, but I do ask a lot of questions. But now, when that next Zometa infusion comes up I’ll definitely insist on the full 30 minutes. I don’t know for a fact that the 15 min infusion time directly caused my side effects but no more agreeable Rosie, lol. I have an MO appt in a couple weeks and will hear what he has to say. I’ll make a quick decision on whether to bring up the drip time of 15 min.

I’m happy to say that I got my treatment as planned today. My temp was normal at intake and labs were fine. I’m feeling much clearer headed than I was, although I still feel a little sluggish body-wise. I sure hope the string of fever days are over


Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy; Lumpectomy (Left) Surgery 12/3/2019 Lymph node removal Radiation Therapy 3/18/2020 Whole breast Dx IDC/DCIS, ER-/PR-, HER2-
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May 23, 2022 05:40PM bevjen wrote:

rosie24,

I would insist on the longer infusion time. I do push for that -- I had to laugh on my last notes that it said "patient requested longer infusion time." I know it didn't mean anything, but you get I did. I also drink a lot of water and make sure that I've eaten prior to the infusion -- and I take a Claritin.

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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May 23, 2022 07:53PM sharware wrote:

Hi Anne16 - Yes, in theory the extra saline is supposed to help lower my calcium levels but I’m not sure that one bag is doing much....when I was hospitalized for a few days, they ran continuous bags of saline (about a dozen or so) over that time period and it definitely made a difference....this hypercalcemia is serious business as I just learned last week from my kidney doctor (I didn’t have a kidney doctor until this event) that my kidney function went down to 6% when the MO said I had to be hospitalized....SIX PERCENT!! Both my kidneys had failed so now the MO is watching my calcium more closely....it is still running 10.7 currently and I think 10.4 is the top normal....so I still have something going on.

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May 24, 2022 08:37AM - edited May 24, 2022 08:39AM by rk2020

After last week's vague CT and bone scan reports, I called my MOs office and since she was out Of the office, they set me up with an appointment yesterday. By the time I got there, she had reviewed my report and already asked the radiologist for clarification AND ordered a PET scan. In preparation for my appointment, I had done a thorough review of ALL my scan results and typed up a list of specific questions. When I was dx MBC, my lifestyle was somewhat nomadic so this is my 3rd MO and my records are scattered amongst 3 facilities. Doing this analysis helped me articulate well thought out concerns while also bringing in some facts that my doctors might overlook because, let's face it, nobody is going to review ALL my scans in their entirety to really understand my complete journey. For instance, saying that I have a lesion on T11 isn't good enough for me. That poor guy has been through so much and just how much more damage can it take before collapsing? It showed up on my very first scan over 2 years ago, has been radiated with limited success, has developed a secondary lesion and my last PET showed it hotter then ever. I want answers and I don't want the details of my condition to fall between the cracks.
I left my appointment with mixed feelings. Yes, my MO was proactive in requesting better results but she also made what I feel were some lame excuses for the radiologist. She said that they don't report on every lesion because then we can get caught up in the details instead of focusing on the big picture. Ummm…I'd like all the details and then I can back up and focus on the big picture all by myself. I paid for the test. i subjected my body to the test. I expect a comprehensive report. She also said that sometimes they count the vertebrae incorrectly because it can be difficult to determine for instance L1 vs L2. Sigh. Nonetheless, the bone scan will get a better read, we are moving my PET scan to a different facility and my list of specific questions is being given to the PET scan radiologist. She requested the PET stat but June 7 was the earliest I could get. On the bright side, my liver does seem to be getting better.

Surgery 5/1/2016 Lumpectomy (Right); Lymph node removal (Right): Sentinel Chemotherapy 6/20/2016 AC + T (Taxol) Radiation Therapy 9/1/2016 Whole breast: Right breast Hormonal Therapy 1/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 3/10/2020 Faslodex (fulvestrant) Targeted Therapy 3/28/2020 Ibrance (palbociclib) Radiation Therapy 2/22/2021 Other part Hormonal Therapy 9/1/2021 Arimidex (anastrozole) Targeted Therapy 9/1/2021 Verzenio Chemotherapy AC + T (Taxol) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External Radiation Therapy Whole breast: Breast, Lymph nodes Local Metastases Radiation therapy: Bone
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May 25, 2022 01:23PM emac877 wrote:

Rosie - I can understand that. I'm not super assertive either and I'm in medicine. LOL. I don't want to be perceived as stepping on toes or being critical but at the same time, if I know something can be done differently and it works better for me I have learned to ask. I was having a lot of pain with my faslodex shots and had to ask that they find other spots because It had gotten to a point that it hurt to wear a belt or sit down against a hard backed surface due to the little lumps left behind. I also had to ask that they inject slower and allow for the vials to warm a little. It made a world of difference.

RK2020- I'm glad you are getting the PET scan and had some of your concerns listened to. I'm glad the liver is improving and I hope the PET clarifies some things for you.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 3/22/2018 Lumpectomy; Lumpectomy (Right); Lymph node removal Chemotherapy 6/7/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/26/2018 Whole breast: Breast, Chest wall Dx 12/4/2019, IDC, Stage IV, metastasized to bone Surgery 12/11/2019 Radiation Therapy 12/22/2019 External Local Metastases 12/22/2019 Radiation therapy: Bone Targeted Therapy 1/6/2020 Verzenio Hormonal Therapy 6/22/2021 Faslodex (fulvestrant)
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May 25, 2022 01:47PM kc54321 wrote:

Hello to all. I’ve had MBC for nearly 5 years, but only Mets to one lymph node and to liver. About 8 months ago, the disease progressed to my bones (spine, ribs, hips). I’ve been on two lines of treatment since progressing to bones (Afinitor and now Gemzar/Carboplatin) which I don’t feel is working. I know I have at least three fractures in my thoracic spine and I believe more in my rib cage. Im getting a CT this week to get a better picture of what’s going on in my back. Hopefully I’ll change systemic treatments and get radiation to my spine as I’m in considerable pain which doesn’t seem to be helped with Opiates. Ugh. My question is, has anyone had fractures to their thoracic spine that has been helped with taking Kisquali or by receiving radiation? I feel very lost with bone Mets as it’s like a whole new disease I’m dealing with, compared to liver Mets. I feel like my doctors think I should know everything about bone Mets because I’ve had MBC for almost 5 years but that’s not the case. I feel like things move much more quickly with bone Mets. I can feel ok one day and the next it’s like the worst pain I’ve ever felt. Last week I was walking fine and this week. I need to use a wheelchair for my back.

I appreciate any feedback you all have to offer! I’ve learned more through this site,and from people like you, than I have from any one of my doctors or nurses. I wish you all a pain free and joyous day!

Dx 8/2/2017, DCIS/IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy 8/16/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/16/2019 Arimidex (anastrozole), Faslodex (fulvestrant) Chemotherapy 1/5/2020 Xeloda (capecitabine) Radiation Therapy 2/25/2020 Local Metastases 2/25/2020 translation missing: en.treatments.local_metastases.local_metastases_types.short_options.liver_stereostatic-body-radiation-therapy: Liver Hormonal Therapy 12/19/2021 Aromasin (exemestane) Targeted Therapy 12/19/2021 Afinitor (everolimus) Chemotherapy 3/6/2022 Chemotherapy 3/7/2022 Other Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Ibrance (palbociclib) Chemotherapy Other
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May 25, 2022 03:57PM nkb wrote:

It's odd about the nurses and the Zometa and the Faslodex. My first nurse told me people do better with a 30 minute infusion and extra fluid at the end- but, said I could technically do 15 min infusion and no fluid. Also one of the nurses said to warm the faslodex and inject super slowly - after that with new nurses - I just said I do better with 30 minutes and the fluid afterwards - and slow infusion of warmed faslodex and they went a long with it. It is hard to be proactive for yourself- I found it easier to be the proactive person for my mom's care. but, you know your body and you have the cancer- not them. sigh...

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Targeted Therapy 6/1/2017 Ibrance (palbociclib) Targeted Therapy 3/13/2019 Afinitor (everolimus) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Chemotherapy 3/10/2020 Xeloda (capecitabine) Targeted Therapy 9/13/2022 Enhertu (fam-trastuzumab deruxtecan-nxki)
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May 26, 2022 01:09PM emac877 wrote:

KC54321 - You are in the right place for questions. Several of us here have had fractures to the spine and radiation. I have several throughout the spine but the only documented fracture is to T8 and I did have palliative radiation to that area. I saw a neurosurgeon because when it fractured I had some encroaching on the spinal cord but was not a surgical candidate. We just keep an eye on it. He told me that the fracture likely won't "heal" in the traditional sense because a large part of that vertebra was eaten by the bone met. I do have pain there but the spine is stable. I have to continually work on core strength and posture to keep from naturally wanting to curve forward. My back pain does sometimes make walking and long periods of sitting painful.

I have mets to the lumbar spine, sacrum, and right hip. I did radiation to the hip. I am 2.5 years on Verzenio/Faslodex and have been stable since my MBC diagnosis. My MO doesn't consider me NEAD as I still have activity on bone scans but my last PET showed no progressive disease. I'm reasonably functional. I think the radiation to my hip and femur caused the muscles to be chronically stiff. It does that. I use heating pads, baths and stretching in addition to tylenol/ibuprofen and Norco when needed. I think the hard part about bone mets is that the painful ones really limit mobility. Sorry to be so verbose. I hope it helps and that the Kisquali offers some reduction in the tumor load for you.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 3/22/2018 Lumpectomy; Lumpectomy (Right); Lymph node removal Chemotherapy 6/7/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/26/2018 Whole breast: Breast, Chest wall Dx 12/4/2019, IDC, Stage IV, metastasized to bone Surgery 12/11/2019 Radiation Therapy 12/22/2019 External Local Metastases 12/22/2019 Radiation therapy: Bone Targeted Therapy 1/6/2020 Verzenio Hormonal Therapy 6/22/2021 Faslodex (fulvestrant)
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May 27, 2022 04:01PM kc54321 wrote:

Thank you so much Emac877, for sharing your information. This is all so tough, for every single person afflicted with this horrible disease. I’m so glad I have found support here.

-Kc

Dx 8/2/2017, DCIS/IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy 8/16/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/16/2019 Arimidex (anastrozole), Faslodex (fulvestrant) Chemotherapy 1/5/2020 Xeloda (capecitabine) Radiation Therapy 2/25/2020 Local Metastases 2/25/2020 translation missing: en.treatments.local_metastases.local_metastases_types.short_options.liver_stereostatic-body-radiation-therapy: Liver Hormonal Therapy 12/19/2021 Aromasin (exemestane) Targeted Therapy 12/19/2021 Afinitor (everolimus) Chemotherapy 3/6/2022 Chemotherapy 3/7/2022 Other Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Ibrance (palbociclib) Chemotherapy Other
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May 30, 2022 09:48AM cowgal wrote:

Just wanting to get the word out about a new weekly Zoom meeting getting set up. You do not need to be working to attend this meeting but the intention is to have a time that will work for those of us that can't make the current Zoom meeting times that are held during the work day. Here's a link to the thread for the input on a time and day that works for you: community.breastcancer.org/for... . Thank you!

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