Topic: Bone Mets Thread

Forum: Stage IV/Metastatic Breast Cancer — 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.

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 20, 2015 02:02AM KiwiCatMom wrote:

Chelle - you should come visit! You're welcome at our place anytime too - free place to stay is always good. :) I grew up in Rapid City, South Dakota, and we spent a lot of time in Denver (the big city!). :) So Colorado feels a bit like home too.

Deanna - thanks for the Patty update. Glad she's better. Hope Dune, Hope and Carla are doing ok also.

Marilyn - sending good thoughts your way for the MRI.

Msparki - welcome! I have mets in my femur, spine, ribs, and pelvis. I know there are some here with mets in their skull, arms, etc. So there's people who are spotty all over.

Thanks for the links TX and Deanna.

Milaandra stable scan! Whoot hoot!

Momallthetime, Glad you're switching oncologists. Can't imagine how hard this must be for you and Dani. Praying for a successful treatment for her.

Bosco, hope you get out of the hospital real soon and glad your counts are recovering and your cough is better.

Cjanet, I am also hoping that your increased pain is regression and not progression. My bones hurt like heck and I was sure it was progression but it was growing pains from healing bones. Praying yours is the same.

LindaE & Annie - glad you're both feeling better.

Wendy - we have similar health system in New Zealand. It's fantastic and awful all at the same time. Care is free, but "extra" care isn't available. I'm lucky to have a great MO.

Myra - counting the days to seeing the beautiful grand-daughter again?

Dee - hope you're doing ok!

Hi to all I've missed!

Sending hugs to all,


Dx 9/25/2006, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 10/18/2006 Lumpectomy: Left Hormonal Therapy 12/9/2006 Radiation Therapy 12/14/2006 Breast Dx 2/9/2013, IDC, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/18/2013 Femara (letrozole) Radiation Therapy 2/18/2013 Bone
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Sep 20, 2015 04:38AM GoldenGirls wrote:

rnsparki - My mom also has innumerable bone mets from her head to her feet -- or wherever it is that the bone scan cuts off. Her tumour markers are also not accurate for her and remained the same even when she had significant progression. Her onc alternates between CT and MRI every 6 months and if she is experiencing symptoms. We don't use PET scans here.

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 20, 2015 05:51AM Bosco19 wrote:

Thanks for thoughts. Should have said I was discharged yesterday. Platelets around 70 so much better. More tests next week. And so I made my shopping trip with BF. Too tired to go to a dinner I didn't want to go to that night though...more silver linings...

On the Zometa and flu, that did happen the first time about 48 hours after infusion but I was warned to expect it and took paracetamol in advance so very mild. On Claritin, I get that by infusion as part of a premed package. Will ask next treatment which premeds are for which drugs.

Mets to brain, bone and lymph nodes Dx 1/18/2013, IDC, Right, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Chemotherapy 2/4/2013 Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Surgery 4/11/2013 Lumpectomy: Right Radiation Therapy 5/6/2013 Breast Chemotherapy 7/14/2013 CMF Chemotherapy 1/7/2014 Taxol (paclitaxel) Dx 6/25/2014, IDC, Stage IV, mets, ER-/PR-, HER2- Surgery 7/8/2014 Radiation Therapy 7/20/2014 Brain Chemotherapy 7/29/2014 Xeloda (capecitabine) Targeted Therapy 7/30/2014 Avastin (bevacizumab) Dx 12/12/2014, mets, ER-/PR-, HER2- Radiation Therapy 1/19/2015 Bone Chemotherapy 3/2/2015 Gemzar (gemcitabine) Dx 3/3/2015, 1/3 nodes, mets
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Sep 20, 2015 06:35AM Kendrasue wrote:

Hello, Msparki. I, also, have multitude mets everywhere: shoulders, arms, spine, ribs, hips, femurs, and skull. Additionally, I haven't had tumor markers checked either, because they don't work for me; so far, my status has been checked with CT Scans and Nuclear Bone Scans. I've been taking Arimdex for five weeks, and begin Xgeva shots next week. Before I began treatment, I had intermittent bouts of pain in many different places at different times so intense that I was virtually unable to move on my own at times. Other times, I was unable to sit down in a chair for the entire day. Lately, however, I haven't been experiencing pain and can only attribute that to having begun Arimidex. I, also, wondered if I were alone in the massive spread of areas affected. xo, Valerie

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Sep 20, 2015 07:49AM Lynnwood1960 wrote:

Welcome Msparki! I also have numerous bone mets...humerous,femurs,ribs,skull,spine,sacrum. My last scan showed mixed lyric and sclerotic lesions. My onc says that shows healing in some areas. My tumor markers are very accurate ,203 at diagnosis, down to 58.6 after 5 cycles of Ibrance/ Femara. I also take Xgeva injections every 4 weeks. My initial pain was in my left arm, which led me to the doctor and the discovery of mets. Pet scan showed I had a fractured pain. My pain now is also erratic, mostly left arm, right ribs and back. Some days no pain, other days a lot. My onc says that Xgeva can cause bone pain, also bones hurt when they are "healing"/ repairing themselves. My original diagnosis was in 2008 with stage 2, no lymph node involvement. I completed 5 years of Femara and Tamoxifen. I have also wondered how they can tell if the bone mets are healing as well. My onc says they will always show up on scans, almost like a scar on the healed bone

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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Sep 20, 2015 08:06AM cjanet wrote:

Good morning ladies,

I did read up on the posts!

Deanna, thank you for getting in touch with Patty, I'm so glad you did. I'm glad she's doing better. I hope she will return here if she's able. I was ready to say let's take the next step and call the husband!

Welcome Msparki! I'm glad you decided to start writing so we can get to know you but glad you already have been lurking and know a lot about us. I don't have bone mets everywhere but looks like you do have company, my mets for now are all along my neck and spine.

Bosco- glad you have been discharged!

Thanks for the feedback on the pain, I"m really hoping it's what you guys are saying. I want to give this Ibrance a chance to do something before jumping to conclusions. Yesterday the pain was slightly less and then kicked up at bedtime. Let's see how today goes. I am going to try to take my kids to a work event in the afternoon.

Cristina Dx 2/16/2012, IDC, 5cm, Stage IIA, 1/4 nodes, ER+/PR+, HER2- Chemotherapy 3/19/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 6/15/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/1/2013 Reconstruction (left); Reconstruction (right) Hormonal Therapy 10/13/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/22/2015 External: Bone Hormonal Therapy 5/6/2015 Arimidex (anastrozole) Hormonal Therapy 8/4/2015 Faslodex (fulvestrant) Targeted Therapy 8/7/2015 Ibrance (palbociclib) Chemotherapy 5/30/2016 Xeloda (capecitabine) Chemotherapy 7/27/2016 Carboplatin (Paraplatin), Gemzar (gemcitabine) Radiation Therapy Breast, Lymph nodes
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Sep 20, 2015 08:43AM Myra1211 wrote:

Good morning ladies. I also have bone mets throughout. First scan said "too numerous" to count. Others have not said that. It is worst in my hips. Was very achy and unhappy last week since a huge low pressure, the remnants of Tropical Storm Grace, came roaring through. I felt like I had aching arthritis from my neck to my knees. I am very susceptible to the weather.

Welcome mspark, hope you are going to join in with this lovely group of women. As you can see, we all look out for each other, both in good and crappy times.

Annie and LindaE, glad you both are feeling better.

Terre, yes first week in Oct. off to see the baby. It is only a 2 hr. Plane ride. Done with 15 hour car rides!! Tush has just now recovered. Things take twice as long to recover as they used to.

Well, good day to all love, peace and understanding. BTW, pink washing has already started in FL. pink license plate holders. I HATE OCTOBER.

Hugs around, Myra

Dx 10/1998, IDC, Grade 2, 3/10 nodes, mets, ER+/PR+ Surgery 12/9/1998 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 1/15/1999 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy 5/19/1999 Radiation Therapy 7/9/2014 Bone Hormonal Therapy 7/10/2014 Femara (letrozole) Hormonal Therapy 11/9/2014 Faslodex (fulvestrant) Hormonal Therapy 3/8/2015 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Sep 20, 2015 09:50AM LindaE54 wrote:

Happy Sunday all,

I also heard from Patty last night. She says that she's feeling a bit better physically, but still exhausted and tired and feels she could sleep 20 hours a day. Thanking all for their concern and love. She may pop in MBC over the next few days if she feels up to it.

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 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/28/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/17/2017 Faslodex (fulvestrant) Chemotherapy 5/14/2017 Taxol (paclitaxel) Radiation Therapy 6/5/2017 External: Bone Chemotherapy 10/2/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
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Sep 20, 2015 10:04AM - edited Sep 20, 2015 10:29AM by gaia0132

Good Morning to all

I know I always say this, but this thread does move so fast I find it hard to be able to address everyone. And i'm sorry I feel like I still have more questions than comfort.... I hope to turn that corner soon.

Deanna and Linda E you both always provide such stable info. Thank you. I never interacted here when Patty was posting, but glad that you heard from her and that she is doing better.

TxMom great links TY

Bosco glad you are home and platlets are going up. How was shopping?

Momma- I hope this new MO/treatment plan is more effective for Dani- thinking of you.

Cjanet stay hopeful that it is regression that you are experiencing

Msparks welcome. I have mets to sacrum, illium, actetabulum, femur, L3&4, T8, sternum, collarbone- so multiple. I am 'new here' so just getting started on treatment.

I am hoping that what everyone shares is true that increased discomfort can be a response to treatment taking effect; I guess I don't fully trust it could be 'working' after just 3 weeks on Tamox. Had my first herceptin infusion last Monday, tomorrow is second. Also the 'pain/discomfort' I feel is more nerve like. It's not bone ache pain...

I also feel like my radiology reprot isn't complete somehow. Evryone here seems to know what type of lesions they have and the size in mm/cm Was that determined by your PET CT scan or a bone scan? I'm feeling confused and want more info than just the SUV, which is basically an uptake value of how much the areas 'lit up'. My MO says a bone scan would be redundant, but I know if I pressed he would get a script for one. I am waiting for approval from insurance for MRI to rule out bone damage/fractures ( please say prayer).

Also can anyone pipe in on the bone strengtheners? Pros/cons and your experiences? I know some are on Xgeva, some Zometa and some people are on Prolia..... I will ask MO his opion of pro/con of each of them tomorrow, but I like to hear from those who are experiencing in REAL LIFE.

I read this thread everyday and I'm wishing all an easeful day.

Dx 6/2015, IDC, Left, 5cm, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2+, Dx 8/2015, Stage IV, metastasized to bone Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Sep 20, 2015 10:57AM 50sgirl wrote:

good morning, everyone.

Welcome Msparks. I have bone mets in many places. My CT scan reports says that I have "diffuse mixed sclerotic and lyric lesions throughout the entirety of the axial and appendicular skeleton corresponding to diffuse osseous metastasis." It was not fun to read that, of course. I felt like I was pretty much one big met! The bone scan report has more specific information of the location of the mets as well as the areas that are most prominent. I was diagnosed in June. The good news is that the severe pain and lethargy that I experienced prior to treatment is gone. I am currently taking Arimidex and have no SEs. I will have my first Zometa infusion next week. I suspect that TMs will work for me since I had a sky high CA27.29 count of 947 before treatment. I hope to have a much lower count next week.

I am having trouble going to previous pages, but I think someone, maybe Valerie?, said she is going to start Zometa this week and would be well hydrated, take Claritin and ask for infusion slower than the 15 minute pace. I was also told that taking a Tylenol and Advil helps. I cannot take Advil, but I plan to do everything else recommended. I hope to have no SEs, but if there are any, at least they will be temporary.

I am continuing to walk daily. Today is beautiful here. The hot weather is gone, and it was a wonderful morning for a 3mile walk. I am hoping to walk another mile later today. We shall see.

Gaia, I hope that you are able to have the MRI so you have all the information you need. Knowledge is power.

Myra, The fall has always been my favorite season, but now that I learned the truth about mbc, I am not looking forward to October. I am hoping to look past the pink ribbons and hoopla and focus on the good weather and foliage. I don't fault the back "survivors" because most of them are as unaware of the truth of the disease as I was. I am happy they have been "cured"' but I am afraid for them, too.

I am sorry I can't address everyone individually. I hope that everyone experiencing pain finds relief, that those who are recovering from setbacks continue on that course, that those who have tests or scans this week have good results, and that those who are stable or seeing regression get better and better.


Dx 6/5/2015, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 6/9/2015 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 8/30/2016 Ibrance (palbociclib) Hormonal Therapy 7/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/2/2018 Xeloda (capecitabine) Chemotherapy 2/10/2019 Taxol (paclitaxel) Hormonal Therapy 11/12/2019 Aromasin (exemestane) Targeted Therapy 11/13/2019 Afinitor (everolimus) Hormonal Therapy 12/26/2019 Femara (letrozole) Chemotherapy 3/8/2020 Adriamycin (doxorubicin) Targeted Therapy 2/6/2021 Verzenio Chemotherapy 4/12/2021 Halaven (eribulin)

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