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 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.

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 1, 2015 03:22PM Leah_S wrote:

Mazal Tov on the new granddaughter Charlotte!

Grandchildren are THE BEST.


Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Oct 1, 2015 04:00PM exbrnxgrl wrote:

Mazel tov, Charlotte. I second Leah on how wonderful grandchildren are. I am expecting my second grandchild in late April.

Hope everyone else is finding some peace and comfort

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Oct 1, 2015 04:09PM Ellelou wrote:

Charlotte, congrats on becoming a grandma. My only grandchild-a girl-was born last year and she has added much joy to my life. Have fun with her. Heart problems too? Same here but a little different. My aortic valve needs to be replaced with a bovine valve soon. Not looking forward to the surgery and recovery. Anyone else had a aortic valve replacement?

Cristina, I hope your scan results are good and you get relief from the pain.

Aurora, good luck with your surgery and recovery.

Hugs to everyone!

Ellen Dx 6/11/2015, IDC, Left, Stage IV, metastasized to bone, 10/13 nodes, ER+/PR+, HER2- Hormonal Therapy 6/18/2015 Femara (letrozole) Targeted Therapy 6/18/2015 Ibrance (palbociclib) Surgery Mastectomy
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Oct 1, 2015 04:39PM LindaE54 wrote:

Aurora - Congratulations on your well thought out decision! You certainly will be in our thoughts and prayers until then and especially on the 16th when you have your surgery.

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 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant) Chemotherapy 5/14/2017 Taxol (paclitaxel) Radiation Therapy 6/4/2017 External: Bone Chemotherapy 10/2/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
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Oct 1, 2015 05:10PM dlb823 wrote:

Aurora, I think we all have fears about surgery. I know I did, especially the 7.5 hour one I had for my mx + Diep recon. But it's a risk worth taking. The one thing I would want to be sure is that you're as comfortable as you possible with your surgeon's experience and success record for this type of surgery. I'm sure you've checked those out, but that's the greatest concern I would have. If you have the best, then it's in God's hands. Beyond that, I echo what Linda just said -- many prayers on your behalf until this is behind you and you're on the road to recovery! (((Hugs))) Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Oct 1, 2015 05:18PM 3-16-2011 wrote:

Aurora, You know your life best. Best wishes to you on your surgery.

Charlotte. I like others hope you can post grandbaby pictures. She is the same size as my lovely daughter who was born 19 years ago. So sorry for your heart troubles. I am glad they figured it out so quickly.

Deanna When I recently complained of hip pain and worry despite many good scans. You wisely said my MO might want to repeat the MRI since it has. been more than 6 months. Well you were right he has ordered an mri and I am anxious to get some answers.

Also celebrating my bathroom remold finished today with a long hot bath :)

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 1, 2015 05:19PM Myra1211 wrote:

Chatlotte, congrats on your new grandchild!! Welcome to the club, it is a much better one than mbc club...LOL

Linda and Annie, congrats on your great news.

Aurora best of luck with your surgery

Looks like Hurricane Joaquin will stay away from the East Coast. HOORAY


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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Oct 1, 2015 06:47PM Sue2009 wrote:

steel rose thank u for your reply. So I now have another qx for everyone. I have been living w/bone mets for 3 yrs, grateful it hasn't gone anywhere else. Had Zometta infusions initially, hated how long it took, I actually had to change MO because I refused to apologize to nurse who told dr I wouldn't talk to her, she thought I was being rude. When dr called me to tell me I could not come back unless I apologized to his very deaf nurse. I laid into him about 2 sides to every story, how his nurse is so deaf she can't hear me anyway & yes I was pissed that my 15 min infusion took over 2 hrs cause they were understaffed. Sorry for my rant. Btw Zometta was easy to take, only SE I got was loose stools on day of treatment. So I gladly changed MO got her to change Zometta to Xgeva injection, along w/faslodex I got out in 30 min tops. Now w/ progression of bone mets I was told I need to decide what I want to try next. I have gone off Palbociclib to do some radiation to both hips My RO is offering a treatment of radioactive IV med called Quadromet. Has anyone tried this, know anything about it. Supposedly it has been around for yrs, kills cancer cells in bones. One time injection, may see drop in WBC, which was what got me w/Palbociclib. If anyone has had this treatment & would like to share experience I would be grateful. Thanks, Sue

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Oct 1, 2015 07:55PM - edited Oct 1, 2015 07:57PM by annieoakley

Aurora, I think you've made a good decision and I know you can do this. Prayers for a successful surgery and an easy recovery. 

Sue2009, I have no experience with Quadromet but I hope someone who does can come along and help you. You've done well and I'm sorry you've had a progression of your bone mets. Praying for you to be stable again.

Hugs to all, Annie

Surgery 5/7/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 8/22/2012 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 9/27/2012 Surgery 1/31/2013 Prophylactic mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 6/11/2013 Prophylactic ovary removal Surgery 9/3/2013 Reconstruction (left); Reconstruction (right) Dx 9/3/2014, IDC, 1cm, Stage IV, Grade 1, 0/0 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 9/3/2014 Femara (letrozole) Radiation Therapy 11/30/2014 Bone
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Oct 1, 2015 08:28PM momallthetime wrote:

Ladies where to begin? To be honest my stomach was turning to have to talk about all that has been going on. I keep a kind of diary with all the appointments and different txs bcs if not i would loose my mind (it's lost already), so i gotta catchup there also.

As I read your posts I am such awe of the camaraderie. Guys maybe a little long, but i wanna get to as many of you as possible.

First update -So on to new Onco, new aggressive tx started, many different chemos being used silmutaneously that's how this is done. Scary but we had to move and fast. Platelets are dangerously low, any ideas what we could possibly do?? Major nose bleeds etc..trying very hard to see how next wk blood draw goes in hope of reversing it. WBC tanked. Neutrophils tanked. ASt/ALT going up. And TMs rising quick. What is going on??? Excessive mets all over, just ridiculous. But, we have great faith and hope that it will turn around. Gotta wait on some better results then they want to move on to Rads. We are holding our breath.

Turns out that convo with ex Onco went extremely uneventful. Actually, it was horrible, this Onco supposedly treated my daughter all these years, and when she heard of one more MRI with more progression, all of a sudden appointment was hard to come by, YEP believe it, and then she told me on the phone that when we do come, we will need to discuss new options. When I called to cancel appointment, and told her that we are actually going more aggressive bcs I see the handwriting on the wall, she said,yes it's reasonable in a flat voice, and didn't volunteer much at all, and told ME to send my daughter her love. Dani is shook up to say the least, after all this time, that is all she had to offer? She said she was not even trying to fight for her. I have been seeing this coming for awhile, she just washed her hands off her bcs she was running out of options. I was just told bt a friend doc that doctors don't much like failure. So they push the ones they think are not winning bets away. So cowardly, This could have been so different, if she would have any balls at all!!. I can't even... I could have told her many many things but to be honest i was thinking who knows when and if i might need her someday, and also it would be tooooo many things to say.

Btw, BIGGIE onco in major NYC cancer center, also BIG time coward, all he kept saying is that we should stick to the other one's opinion, BUT i know that they had a kinda argument about different opinions. Shame shame. Disgusting. I was not asking for bashing the other Onco just an opinion ON A LIFE!!!. These ppl with their egos, but Karma guys, oh Karma, even if ppl don't get diseases they will get old, and kinda needy and someday it will come asking for payback ;) myabe like many docs that write books after they will say, oh NOW I KNOW what is like to be a patient. The hell with them.

Rachel1 my daughter sounds exactly like you, she wants to know but doesn't, neurosurgeon literally went after her in a different room just to ck her, bcs she was running away. then he came back and spoke with me, It's good for you to have the support you have.

Deana, cheering for your TMs!! btw regarding Radiologists reports, I know that they use type of pre Form Form...very disappointing, rarely will they actually write details. This business of just saying larger or more aggressive without any details. Deanna any ideas for your low Netrophils?

Wleeky1952 it's weird to see how few ladies here are HER2+ my daughter is, bcs of a biopsy done at her request (insistence), it showed that it changed from HER2- , what changed for you to get a biopsy?

Valerie you got company!

Annie so happy for you. Love your prayers.

LindaE what a great moment for you on stable TMs!

Cristina, good wishes on the MRI, it's really tough, and I think even worse with little ones around you. I can vouch for it, I see what my girl has to go thru.

Dee yep, it is good to be out there, but your remark was funny.

Terre thanks sweetie for your support.

Gaia 0132 - your feelings only proof that you are Human!! are you on Zometa and Xgeva? My daughter is on both is that a lot??

Dunnesleeper you are going thru such a hard time, everyone cares so much about you, take it easy.

Freebird53 I was paralyzed when i read what you wrote, we could all understand you. Its' insane, I hope we could change the course with Dani's really scary.

I would like to address all of you, i did read your threads last week also, but to put things down and write that is another story.

So sorry I am skipping someone, and I do wish you a peaceful weekend.

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