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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 4 or Mets.

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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Page 862 of 885 (26,531 results)

Posts 25831 - 25860 (26,531 total)

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Jun 24, 2021 12:58PM BigPeaches wrote:

I had a similar experiance as GoKale, they numbed the area, gave me some good pain meds and it was over in a flash, about 10 minutes and that was the first time in months I was actually NOT in pain.

Dx 6/11/2008, IDC, Right, 2cm, Stage IIA, Grade 2, 0/0 nodes, ER+/PR+, HER2+ Surgery 7/17/2008 Mastectomy: Right Chemotherapy 8/18/2008 AT Targeted Therapy 8/18/2008 Herceptin (trastuzumab) Hormonal Therapy 12/31/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/27/2018, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2+ Radiation Therapy 3/28/2018 External: Bone Chemotherapy 5/15/2018 Taxotere (docetaxel) Targeted Therapy 5/15/2018 Perjeta (pertuzumab) Targeted Therapy 5/15/2018 Herceptin (trastuzumab) Hormonal Therapy 8/29/2018 Arimidex (anastrozole) Hormonal Therapy 8/30/2018 Zoladex (goserelin)
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Jun 24, 2021 02:16PM carolina_girl63 wrote:

No pain would be nice. My back has hurt for so long I actually can't remember what it is like not to be in pain!

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Jun 24, 2021 02:19PM carolina_girl63 wrote:

NicoleRod- I definitely am grateful for no organ involvement. My brain is just trying to process that the cancer is back. Just found a week ago and have pretty much carried on as usual.

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Jun 24, 2021 02:24PM carolina_girl63 wrote:

GoKale4320- I have been doing some research on treatments and the ones that you mentioned are the ones my MO said that I would most likely be on. If you don't mind me asking did you have any issue with the insurance company paying for the medication? When I looked these drugs up on my insurance companies website most were not covered. I try to cross a bridge when I get to it but this is concerning for me as I realize most of these are very expensive drugs!

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Jun 24, 2021 03:37PM RK2020 wrote:

carolinagirl- If you are like most of us, you will need time to let this news sink in and grieve. My bone biopsy was to my right iliac and it was easy, peasy. I was asleep and woke up with a small bandaid and a little bruised feeling. Heck I’ve had shots worse then that. I’m also HR+ and was taking tamoxifen since I completed my stage 2 treatments 3.5 years earlier. Since I failed on tamoxifen my first line of treatment was Ibrance, Fulvestrant and Zometa (similar to xgeva). I never checked with my insurance prior to my doc ordering the meds but MAYBE you can’t find these drugs on your approved list because they are specialty drugs? MyIbrance comes from a specialty pharmacy. Normally, I have to get my mail order prescriptions from ExpressScripts but I get Ibrance from Accredo. I know there are women who get financial assistance from Pfizer, the maker of Ibrance. And if you do find you need financial assistance, your cancer should also have a social worker who can help you.

https://www.pfizeroncologytogether.com/patient/financial-assistance

Dx 5/2016, IDC, Right, 1cm, Stage IIA, Grade 3, ER+/PR+, HER2- Dx 3/2020, IDC, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Chemotherapy AC + T (Taxol) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone
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Jun 24, 2021 07:07PM illimae wrote:

Carolina girl, I had a bone biopsy at diagnosis in 2016. It was under twilight sedation and I only recall some pressure but didn’t see anything as I was laying on my stomach. I believe I just rested for a couple days but no pain or impact to normal life. One one mistake was googling the procedure, do not do that, I freaked myself out for no reason.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Jun 24, 2021 07:53PM cyathea wrote:

Hi carolina_girl63, sorry that you are here with us. It’s definitely an adjustment, but it will become easier than it is right now.

I also had a bone biopsy of a T11 lesion. I was awake and they gave me local anesthesia. The anesthesia is administered as you lie on your back. The procedure didn’t take very long. I don’t remember having any precautions after the procedure other than to just rest.

I don’t know if I didn’t have enough anesthesia or if the needle hit a nerve, but I got a back spasm during the procedure. The muscle on the right side of my upper back contracted and was very sore. Unfortunately I still have pain, and it’s been over a year since the procedure. My MO thought that my back pain might be from the mets but after multiple CTs and MRIs, he now thinks my pain is just muscular. I don’t know if my current pain is from the procedure or something else but it is in the same place (near T11). I also had radiation to T11, so perhaps that aggravated the muscle that was already constricted from the bone biopsy.

I don’t mention this to suggest that you might have a problem with the procedure. Please know that most people sail through these biopsies without any issues at all. I only mention it so that you can talk to your medical team and be completely informed.

We are in the oligometastatic category. I only had 1 lesion and it sounds like you only have two. The prognosis is good when we only have a few mets, and some women live for a decade or more without progression to other bones or organs. That said, dealing with treatment is never easy. I hope that you find comfort as I do from others on this forum, many of whom have extensive mets and far more experience than I have.

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/8/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/17/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/15/2020 Other Radiation Therapy 5/31/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/20/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Jun 24, 2021 09:01PM SF-Cakes wrote:

Carolina Girl, I had a CT-guided bone biopsy of T9 lesion in my spine. Nurses got me comfortable on my stomach with pillows, etc (a little more difficult post-mastectomy) and then I was given a little sedation. Definitely awake during the procedure, but not anxious. Felt pressure and once a bit of pain, maybe two seconds worth, at which point they gave me more IV meds. They kept me for observation an hour afterwards, I felt fine, had a friend pick me up afterwards and then we ate donuts in the car. Felt tired the next day, I think honestly more from the anxiety I'd been having about the procedure and insomnia leading up to it. Results took about 10 days, apparently takes longer with bone biopsies (literally harder tissue to sample). Hopefully yours will go smoothly!

Dx 6/2020, ILC, Left, 6cm+, Stage IIB, Grade 3, 2/4 nodes, ER+/PR-, HER2- Surgery 7/1/2020 Mastectomy: Left Chemotherapy 8/4/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/3/2020 Chest wall Dx 1/2021, ILC, Left, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 2/10/2021 External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jun 25, 2021 07:07AM KBL wrote:

I also had a CT guided bone biopsy in August of last year. When they put the meds in, I told them I didn’t feel any different. The next thing I knew, they were waking me up after. I guess they gave me a little more, and it put me out. I have also had a bone marrow biopsy, and I was more sore after that. I hope you have a nice, easy procedure and get your results quickly. The waiting is the hardest.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 25, 2021 08:42AM GoKale4320 wrote:

Carolina girl - I did not check my insurance to see if it was covered, but the cancer center handled all of that. They also reached out to me about financial help with Xgeva that I didn't even know was available.

I had radiation in early April. That helped me so much with the pain. I had to ask for radiation, and let them know that I was miserable and needed it. So one week of radiation daily and after 6 weeks, the pain subsided. I get by with a daily Alleve and a Tramadol and can do just about everything I used to do except run.



Dx: January 2017, IDC, Stage IIa, 1/23 nodes, <1cm Chemo 2/16/17 Cytoxan Taxotere x4 Radiation 6/8/2017, natural alternative to tamoxifen 3/2021 Stage 4 - mets to bones. Ibrance and Letrozole and Xgeva Dx 1/2017, IDC, Right, <1cm, Stage IIA, Grade 2, 1/23 nodes, ER+/PR+, HER2-
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Jun 25, 2021 11:30AM Sunshine99 wrote:

As I recall for my L4, L5 biopsy. they put the IV line in me when I was in the prep room and when they took me into the procedure room, they had my lie on my stomach. Then the nurse said something like, "Here's your party juice" and that's all I remember until I woke up in recovery. Stayed there about an hour, I think, and then they took me out to the spot where my husband was waiting for me.

I don't remember any real pain afterwards, but I feel like there's a bit of a lump still there in the area of the biopsy - unless it's just a nice little roll of fat!

I did have a moment of concern when both the tech and the doc said that I was there for a bone marrow biopsy. I said, "No, you're going to biopsy L4 and L5". They double checked and sure enough, I was right. The other thing was I told the tech not to use my right arm for needles, etc. He even put a warning band on my right wrist, but then started to use that arm for the IV line! Really??? I "reminded" him, and he apologized and then used my left arm.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Jun 25, 2021 01:00PM carolina_girl63 wrote:

Thank you so much for all of the responses and wonderful advice. I don't feel as nervous now about the biopsy. I'm ready to get this thing done and move on to the next step. Coming here has always been my best source of advice and reassurance.Hug

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Jun 25, 2021 01:25PM NicoleRod wrote:

Carolina girl... I see you are from Lexington SC...I was almost there this weekend. My cousins moved there about 3 years ago from NY and they are having a graduation party for thier son this weekend...but we were not able to make it.

I will take some time for you to process it all...but you will. Seems like you are on the right track... :)

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/29/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jun 25, 2021 02:59PM carolina_girl63 wrote:

NicoleRod- Too bad you weren't able to make it to Lexington. It is a wonderful place. Was the graduation a high school graduation? My three all graduated from Lexington High School. If you ever make it here please let me know.

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Jun 25, 2021 03:35PM NicoleRod wrote:

Yes it was a HS Graduation. I have been there 2 times it's very nice. My cousins also just opened a fitness center...not a big gym. Its called PX-7 . If I am ever back there I will definitely let you know :)

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/29/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jun 25, 2021 05:56PM JoynerL wrote:

Carolina, I have had two bone marrow biopsies. They sound dreadful. They are not. The idea is so much worse then the procedure. I agree with what others have said: You are put into a twilight sort of mode with drugs similar to those used for colonoscopies. I felt no pain, except for the emotional pain of anticipation. Try not to be afraid of the actual biopsy procedure.

--Lynn Dx 12/1990, IDC, Left, <1cm, Stage IIA, ER+ Surgery 1/2/1991 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Saline implant Chemotherapy 1/15/1991 CMF Hormonal Therapy 6/30/1991 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/31/2002 Evista (raloxifene) Dx 2/9/2017, IDC, Left, 1cm, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 3/5/2017 Faslodex (fulvestrant) Targeted Therapy 3/5/2017 Ibrance (palbociclib) Radiation Therapy 1/9/2019 External: Bone Chemotherapy 1/17/2019 Xeloda (capecitabine) Radiation Therapy 10/27/2020 External: Lymph nodes
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Jun 26, 2021 05:47PM Hopfull2 wrote:

Hi ladies. It’s been a while since I posted here. I took a break trying to enjoy and stay busy. Hopefully everyone is ok and keeping faith. I just had a CT Thursday to my chest ,pelvic and abdomen. My MO orders it every 3 months. Report shows 2 lesions in my liver. Reads , new low density hepatic lesions suspicious for interval development of hepatic metastatic disease. I got this on my portal today. I’m a mess. Super scared. I’m sure my MO will contact me Monday. I know some of the ladies on this board have bone Mets along with liver Mets. I’m praying it’s wrong. Maybe just a cyst. I feel a mess, the same way I felt when I first found out I had bone Mets, it will b a year in about two weeks since my stage IV diagnosing . Anyway. Hug

E🌺41yes.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/7/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Dx 7/2020, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 9/7/2020 External: Bone Targeted Therapy 1/19/2021 Verzenio Radiation Therapy External: Bone, Brain Hormonal Therapy Femara (letrozole) Hormonal Therapy Zoladex (goserelin)
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Jun 26, 2021 06:05PM candy-678 wrote:

Hopfull2- I am one of those with bone and liver mets. We found mine (bone and liver) at the same time. They may want to do a liver biopsy on yours to verify it is MBC--- if it is a large enough lesion and in an area they can get to without a problem. I had a liver biopsy at diagnosis to verify the MBC in the liver and not another reason for the liver lesion. Prayers to you. Keep us informed and you can check out the Liver Met Thread too-- I am on there also.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jun 26, 2021 06:52PM RK2020 wrote:

Hopfull2 - Hugs. ❤️

Dx 5/2016, IDC, Right, 1cm, Stage IIA, Grade 3, ER+/PR+, HER2- Dx 3/2020, IDC, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Chemotherapy AC + T (Taxol) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone
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Jun 26, 2021 08:11PM Sadiesservant wrote:

Sending hugs Hopeful. I know what a gut punch it is to have it spread to the liver. I was bone and right pleura until December. But don’t give up. Xeloda resolved my two mets quite quickly. Hang in there..

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine)
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Jun 26, 2021 08:40PM S3K5 wrote:

Hopfull2, it is always a shock when the cancer goes from the primary to other secondary places. Bone mets to liver is more common than I thought but treatment don't differ much. Most of the time the first line of treatment for the bone usually takes care of the liver mets.

I was bone only for 6 years but after that I got a similar report as you did - suspicious of liver mets (2 small lesions). Yes, that freaked me out! Got a second opinion immediately at a bigger cancer center. That doctor eased my mind saying that we don't know if it is mets and even if it is, there are plenty of options for non-chemo treatments. My biggest fear was getting on chemo. Ibrance plus faslodex had failed and I had to get on to something else. Needless to say, it was a relief and my next treatments kept me stable. I carried on with my life, my full time work, travel, etc.

It will take time to digest this new finding but hopefully it is not mets in the liver. Wish you the best in this journey.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/14/2008 AC + T (Taxol) Targeted Therapy 5/29/2013 Ibrance (palbociclib) Chemotherapy 1/31/2019 Xeloda (capecitabine) Chemotherapy 4/4/2019 Taxol (paclitaxel) Chemotherapy 10/29/2019 CMF Targeted Therapy 7/6/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/9/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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Jun 27, 2021 10:37AM NicoleRod wrote:

S3...wow 6 years bone only my gosh...I wish I could get even 4 months out of treatments... :(

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/29/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jun 27, 2021 04:04PM - edited Jun 27, 2021 04:05PM by star2017

hI everyone,

i found out last month that the pain i'd been having for months was caused by metastasis in the pelvic bone and sacrum. i was about 3.5 years from my initial bc diagnosis (took tamoxifen and then anastrazole). the month since diagnosis has been...rough. thank you all for sharing your stories, as i've felt less alone in reading them.

i feel a little better since the initial shock has warn off, and i've started treatment -- radiation, fulvestrant. eventually i'll be adding abemciclib and zometa. i'm really nervous about the zometa side effects. do the rest of you take it? how's it been?

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/16/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/28/2017 AC + T (Taxol) Surgery 4/17/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy 6/18/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio
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Jun 27, 2021 04:23PM Hopfull2 wrote:

Hi Star2017,, I have had about 3 rounds of Zometa. I go for another in about 2 weeks. I get absolutely zero side effects. I take Tylenol the morning of and i know lots of the ladies Take Claritin the night before and morning of. I see your on Verzenio,, I too am on that. Hope your SE are smooth.

E🌺41yes.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/7/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Dx 7/2020, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 9/7/2020 External: Bone Targeted Therapy 1/19/2021 Verzenio Radiation Therapy External: Bone, Brain Hormonal Therapy Femara (letrozole) Hormonal Therapy Zoladex (goserelin)
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Jun 27, 2021 04:47PM buttonsmachine wrote:

Hopfull2, sorry to hear about the new liver spots. I got liver involvement about 6 months after my MBC bone mets diagnosis. Similar to you I had two liver spots show up. Fortunately for me, chemo actually knocked out the liver spots completely. My bone mets are still extensive, on the other hand. This stuff is hard no matter how you look at it, but hopefully the liver spots are manageable and this can be dealt with. We're here for you! Please keep us posted!

Star, I'm on Xgeva (different but similar to Zometa), and I have zero side effects that I'm aware of. :-) Hopefully you'll do great on Zometa. Best wishes!

Diagnosed at 32. Local recurrences one year later, probably due to needle seeding at inital biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole-breast Hormonal Therapy 4/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal; Mastectomy: Right Chemotherapy 11/30/2017 AC Surgery 3/31/2018 Lymph node removal; Mastectomy: Right Radiation Therapy 4/30/2018 External: Lymph nodes, Chest wall Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 7/30/2018 Zoladex (goserelin) Hormonal Therapy 2/1/2019 Aromasin (exemestane) Hormonal Therapy 9/30/2019 Faslodex (fulvestrant) Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 8/30/2020 Ibrance (palbociclib) Dx 1/2021, IDC, Stage IV, metastasized to liver/lungs Chemotherapy 1/15/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Jun 27, 2021 05:08PM Hopfull2 wrote:

thank you for your replies. I feel a bit calmer today. Tomorrow hopefully MO calls me. I see my therapist tomorrow morning. Glad I’m seeing her,, just in time.

BUTTONS,,, after you found out about your liver spots. Did you do IV chemo ?

E🌺41yes.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/7/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Dx 7/2020, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 9/7/2020 External: Bone Targeted Therapy 1/19/2021 Verzenio Radiation Therapy External: Bone, Brain Hormonal Therapy Femara (letrozole) Hormonal Therapy Zoladex (goserelin)
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Jun 27, 2021 05:24PM buttonsmachine wrote:

I did do iv chemo, but it actually wasn't because of the liver spots. I started iv chemo because the cancer on my dura was getting to be a problem. It was a last ditch effort to avoid whole brain or whole dura radiation. Fortunately for me, chemo worked on my dura, and it worked on my liver too.

You can hopefully treat the liver spots without having to do iv chemo. :-)

Diagnosed at 32. Local recurrences one year later, probably due to needle seeding at inital biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole-breast Hormonal Therapy 4/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal; Mastectomy: Right Chemotherapy 11/30/2017 AC Surgery 3/31/2018 Lymph node removal; Mastectomy: Right Radiation Therapy 4/30/2018 External: Lymph nodes, Chest wall Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 7/30/2018 Zoladex (goserelin) Hormonal Therapy 2/1/2019 Aromasin (exemestane) Hormonal Therapy 9/30/2019 Faslodex (fulvestrant) Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 8/30/2020 Ibrance (palbociclib) Dx 1/2021, IDC, Stage IV, metastasized to liver/lungs Chemotherapy 1/15/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Jun 27, 2021 06:41PM KBL wrote:

Star2017, I’m on Zometa. I started out with monthly for six months and now once every three months. I have to say the first infusion was a doozy for me. I took Claritin and Tylenol, but I was in bed for three days. All my bones hurt, and it felt like I had the flu. I slept a lot when I could. I haven’t had any reactions since then. After the first time, they slowed the infusion to an hour. You can ask them to have it go slower than the norm. I’ve since been able to go back to a half hour. Having flu-like symptoms is common for the first time. I’d do it again if I had to. No regrets.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 27, 2021 07:40PM star2017 wrote:

Thank you all for sharing the zometa experiences. I suppose I am most concerned about the possible issues of the jaw bone.

What is the Claritin for?

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/16/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/28/2017 AC + T (Taxol) Surgery 4/17/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy 6/18/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio
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Jun 27, 2021 08:45PM RK2020 wrote:

star - the Claritin is for bone pain. After my first infusion which was hideous, I now take Claritan the day before, day of and day after. I also have them slow the rate to 45 minutes and get an extra bag of IV fluid too. Since side effects often fade over time, I went without the IV fluids last time and felt like I had the flu for a few days. Next time, I’m getting the extra hydration again.

This video is long and he speaks fast, but if you are interested in learning about Zometa, this video is worth your time investment. https://youtu.be/8AmoeY9ohoY

Dx 5/2016, IDC, Right, 1cm, Stage IIA, Grade 3, ER+/PR+, HER2- Dx 3/2020, IDC, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Chemotherapy AC + T (Taxol) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone

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