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 04:09AM - edited Oct 28, 2021 03:22PM by moderators

Posted on: Jun 22, 2012 04:09AM - edited Oct 28, 2021 03:22PM 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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Oct 2, 2015 02:35PM 50sgirl wrote:

Deanna, Congratulations for the lower TMs, lower is good regardless of how much lower. I am still waiting for my results.


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)
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Oct 2, 2015 02:39PM KiwiCatMom wrote:

Dune - hope you get some pain relief soon. Chronic pain is just awful.

Myra - looks like the hurricane will miss the US. Fingers crossed. Enjoy that baby!

3/16 - Just horrifying the way the former MO treated Dani. I had the same thing - my original MO had me written off before we even started treatment. So glad you fired her.

Dee - wow! Moving a raised bed is lots of work. Glad you're feeling well enough to do it.

Deanna - always love your fantastic advice.

Annie - hope the two tummy pills and Celebrex works for you.

I got to meet Woody and his step-kittens last night as I had to stop by the Kitten Inn to drop some stuff off. They're too little to handle, but got to pet the momcat (the little fluffy tortie) and look at the babies. She has five of her own; all fluffy and cute, mostly torti or black-ish. But one is black and white with a tiny black spot under his chin. And he's huge. He's like double the size of the others! Too dark to get pictures, so you'll have to trust me on this. Woody has fitted right in and the momcat has taken him on as her own. Just love their little ears. Got to also pet five pregnant moms; they're all about ready to pop. And peeked in on some two day old babies. Hate seeing all these pregnant cats - people really need to spay and neuter. But will admit to having my heart explode a bit when I see the wee babies.

On a less happy note, I have now been diagnosed with diabetes. It's not bad; 50 is the cut-off and my blood sugar was 52. Explains why I've been so exhausted and occasionally dizzy lately. So now I have to monitor my blood sugar four times a day for two weeks. Am not fond of sticking my finger and making it bleed. My eating habits have been atrocious lately and it's bitten me in the bum. So I think it should be easy to control by just cleaning up my act quite a bit. Lesson learned.

Sending hugs to all,


Dx 9/25/2006, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 10/19/2006 Lumpectomy: Left Hormonal Therapy 12/10/2006 Radiation Therapy 12/15/2006 Breast Dx 2/9/2013, IDC, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/19/2013 Femara (letrozole) Radiation Therapy 2/19/2013 Bone
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Oct 2, 2015 02:47PM - edited Oct 2, 2015 03:12PM by LindaE54

Deanna - Congrats on dropping TMs!

NYC - Contrats! Thank you for posting pics of Leah - she's simply adorable.

Dee - I know, I also tried searching on that thread. Leggo and I have advised the Mods - we'll see. There are 2 sites I regularly visit: and

In fact, I just got off the phone with the site (Ville Marie Medical Centre in Montreal) that offers the MonaLeesa-3 clinical trial (ref NCT02422615). I thought I could qualify but inclusion criteria says progression with only one line of endocrine therapy. I had a mix of Femara and Tamoxifen.

Another interesting trial is the Sandpiper (ref NCT02340221). I started a thread but not much response. I think I would fit in that one but the 2 Montreal locations are no longer recruiting.

The above clinical trials are also available in the US and other countries. Still, I will take them to my Onc on Monday and see what she says.

There's also an interesting trial at the Dana Farber in the US only (ref NCT02448771) using Ibrance + Bazedoxifene. Bazedoxifene is an endocrine therapy, blocking estrogen stimulation. That's also on my list of questions - can it be used alone and what is its efficacy?

edited to remove FDA/Health Canada approval

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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Oct 2, 2015 03:12PM Lindalou wrote:

Deanna, TM's down is a celebration! So good to hear the Ibrance and Faslodex are doing their job.

Charlotte, Leah is so precious. What a nice gift after all you have been through. You and Myra must be on cloud 9.

Terre, I swear if I lived closer I'd be taking some kittens home. Diabetes? Can you control with diet right now or will you need to start medications? I've been eating a fair amount of chocolate lately. Hmm...guess I can curb that!

Lynne, Hope you get results today.

A good weekend to all.....I'm seeing an old college friend tomorrow which is the best medicine ever.

Linda Dx 11/1/2007, ILC, Left, Stage IIB, Grade 3, ER+/PR+, HER2- Dx 8/2009, Stage IV, metastasized to bone Dx 5/13/2014 Targeted Therapy 4/21/2017 Ibrance (palbociclib) Chemotherapy 10/2/2017 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 10/23/2017 Xeloda (capecitabine) Radiation Therapy External: Bone Radiation Therapy External: Bone Surgery Mastectomy: Left, Right Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Radiation Therapy External: Bone Radiation Therapy Bone
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Oct 2, 2015 03:22PM Myra1211 wrote:

NYCchutzpha, Mazel Tov. Too bad our two girls don't live closer. It is an amazing feeling!!!

Terre, please take care of yourself. Diabetes is insidious too.

Linda, thx for all that great trial info.

Love to all, myra

Dx 10/1998, IDC, Grade 2, 3/10 nodes, mets, ER+/PR+ Surgery 12/10/1998 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 1/16/1999 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy 5/20/1999 Radiation Therapy 7/10/2014 Bone Hormonal Therapy 7/11/2014 Femara (letrozole) Hormonal Therapy 11/10/2014 Faslodex (fulvestrant) Hormonal Therapy 3/9/2015 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Oct 2, 2015 03:55PM KiwiCatMom wrote: did I miss an entire page? Leah is stunning! What a sweet baby. Made me say Awwwww...

Patty and Bosco - welcome back. Sorry about your hospital time and hoping you both get back on your feet soon.

Deanna - Hooray! -10 is better than +anything.

Lindalou - have fun!

LindaE - cool info on trials. We have like nothing here in NZ. I think I posted a link to a facebook page about the Karen Louisa Foundation; they're trying to get clinical trials into NZ as one of their main missions. People here who want to do trials generally have to have major $$ or do a go fund me page (or similar) to go to Australia or Europe. There's no reason not to have them here that I can see; we have some amazing research and doctors here through the universities in particular. My MO is good at keeping up with things, but I've found info there that was new to him. So thanks!

At this point the diabetes is controllable with diet (we think). I have been eating way too much sugar the past two months. I don't normally crave sugar/sweets, but have been this winter for whatever reason. So, I'm reasonably sure that by cutting out sweets and watching my carbs that I'll have it under control quickly. I don't want shots or pills. So I'm quite determined. Interestingly enough, I've lost 7 kg in 3 months. So I'm back down to the weight I was when I moved to NZ seven years ago. Still have a lot to lose, but at least it hasn't gone up. The only symptom I have from the diabetes is fatigue. No excess thirst, no tingly toes, etc. But this does likely explain why I've been so unbelievably tired the past few months. I was terrified it was the cancer recurring, but my tumour markers are stable, which is great news. And all my other blood work was "perfect". So not all bad news. And compared with what so many of you are dealing with, this is a no big deal thing, and will be fine.

Sending hugs to all,


Dx 9/25/2006, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 10/19/2006 Lumpectomy: Left Hormonal Therapy 12/10/2006 Radiation Therapy 12/15/2006 Breast Dx 2/9/2013, IDC, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/19/2013 Femara (letrozole) Radiation Therapy 2/19/2013 Bone
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Oct 2, 2015 04:46PM momallthetime wrote:

Terre at least you got a good run, you could also ask for the A1C that is a true show of your blood sugar level, most place above 6 they will consider you diabetic, my hubby with no history and a terrific diet had his numbers creep up, so when doc said it was close to 6, i was hoping he would not consider him diabetic, doc told me no such a thing as a little bit pregnant. (A1C runs 3 months back)

Deanna - so happy for you, about time this thing calms down! Her WBC is 1.5 her abs. neutro 1.0, they called she should go on Neupogen which she has at home and she gives it herself, platelets 57. She went to a great and nice ENT for the nose bleeds it was cateurized for now, hope it will hold!! Yes, I mentioned to him about the site you sent me, i gotta ask again on Wednesday, her next appointment.

Pattypeper you are so missed, come home real soon.

Annie , LindaE thanks so much for your warm wishes, trust me i am no saint!!, nights are no nights any more, i get like 3 hrs of good sleep, and the rest I am on my guard,, you would all do the same.

i am always so emotional when i read your posts, so sincere and warm, thanks for all your gentle nudges I had a lot of support.

Bosco it's a gr8 idea, i will def ask if it's something he could give, this business of watching for not too much blood loss it's not easy.

Amy I am so glad you are doing better, and Deanna giving us the news with the tx should give hope.

Hey Charlotte, a big Mazal Tov, so nice for the new life, it brings a smile to all of us.

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Oct 2, 2015 05:05PM ShetlandPony wrote:

Hello. I'm just visiting this thread to see if any of you who have bone mets from lobular breast cancer can give me some input. If you have ILC bone mets, could you tell me what imaging shows them? As we know, ILC can be hard to detect. My upper arm has been hurting for quite a while, but my PET-CT and an arm x-ray show my arm and other bones looking normal. Do I need a bone scan (had one a year ago) or an MRI? Or should I just pursue this with my PCP and look into other causes for my arm pain, such as a muscle problem? It doesn't hurt at rest, but using it in certain ways hurts a lot.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Oct 2, 2015 05:29PM - edited Oct 2, 2015 06:03PM by 3-16-2011

Shetlandpony Sorry I have no wisdom for you but I hope someone chimes in soon to help you with your pain and worry.

NYCchutzpah: Thank you for sending the beautiful grand baby pictures. She looks right at home. in your arms.

I am wondering if anyone else suffers from random acts of crying. I was complimenting my son at a school meeting and the waterworks just started. and took me by surprise. I guess I let myself think about what I COULD miss. Not helpful thoughts. Any helpful hints would be appreciated.

Before I go dbl so happy tumor markers are down. Patty so great. to see you post. I am really sending positive energy your way

momallthetime Your post is a bit. more hopeful today. I imagine your daughter is more comfortable with the nose bleed treated. Sending both of you positive thoughts.

3-16-2011 Dx 3/16/2011, IDC, 2cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Chemotherapy 5/3/2011 AC + T (Taxol) Surgery 10/18/2011 Prophylactic ovary removal Radiation Therapy 11/10/2011 Surgery 10/10/2012 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Dx 11/5/2014, Stage IV, ER+/PR+ Hormonal Therapy 1/1/2015 Aromasin (exemestane) Targeted Therapy 10/15/2015 Afinitor (everolimus)
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Oct 2, 2015 06:16PM Lynnwood1960 wrote:

Shetland, I have ILC bone mets. Ironically it was pain in my left upper arm that sent me to the doctor. X-ray was negative/normal. Dr convinced it was a rotator cuff injury. Next step MRI which showed the mets. Next step bone scan which showed extensive mets. Next step Pet/ct scan which confirmed mets confined to bone only. My arm hurt all the time, worse at night and I couldn't lay on it without pain. When I reached behind my back one day to scratch it, the pain was severe and that's when I knew I had to get to the doctor. In your case, I would think that the pet/ct scan would pick up mets in your arm. 3-16, I have those crying spells also! No warnings, but will just be moved to tears from a simple everyday moment. This whole cancer thing is rough ....let the tears fall when they need to.

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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