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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 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.

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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Jun 27, 2021 09:47PM star2017 wrote:

Thank you, RK2020. I really appreciate the explanation and resource.


I remember people taking Claritin to help with Neulasta.

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 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 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy 8/4/2021 Verzenio Targeted Therapy Lynparza Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant)
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Jun 28, 2021 11:39AM Sunshine99 wrote:

Star, I've been on monthly infusions of Zometa since May 2020. The first one was the roughest with pretty bad nausea the night after the infusion. Compazine didn't really help much, but at least I never vomited. The second infusion was a little better, and after that, I've really had no side effects other than the occasional mild fever for 24 hours or so. My infusions take about 30 minutes.

Regarding the ONJ (osteonecrosis of the jaw), they always ask if I plan to have any dental work, like extractions or root canals. The nurse told me that I should be off Zometa for 3 months before any invasive dental work. I have cleanings every three months, but have not had any jaw issues to date.

I take a Claritin (or generic) daily, mostly to help with my perpetually drippy nose.

Carol

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 28, 2021 01:26PM prairiesea wrote:

Star....I'm also on Zometa monthly. Like many others, the first time was rough, with bad nausea afterwards. At my infusion center they were doing the infusions over 20 minutes so I asked the next time for 30 minutes instead. I also tried harder to be well hydrated the day of. I've also tried the Claritin but I usually forgot to take it until the day of so I'm not sure it has much effect. I really haven't had any difficulty since the first one. I made sure I was up to date on dental work before I started, and my dentist was very clear that the biggest risk was extraction. Usually your oncologist will ask if you've been cleared by a dentist before starting Zometa.

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Jun 30, 2021 01:21PM thebar1957 wrote:

I'm on my second cycle of Ibrance (125 mg) and Faslodex injections. I have hardly any side effects except for mild fatigue. My white blood cell count went from 6.5 to 3.2 after the first round but my doctor has not decreased my dose. I take it within 30 minutes of my dinner each night as the pharmacist suggested. My dr mentioned Xgeva at our last appointment but hasn't started me on it yet.

Surgery 8/16/2013 Mastectomy: Left; Prophylactic mastectomy: Right
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Jun 30, 2021 02:52PM GoKale4320 wrote:

thebar1957- sounds like you’re doing great with Ibrance. The white blood cell count is excellent and no reason to lower the dose. I’m on monthly Xgeva shots and so far, so good. I just started my 4th cycle of Ibrance so not a ton of experience, yet.


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 30, 2021 07:58PM - edited Jun 30, 2021 07:59PM by Docy

Hi all,

Just got bad news today.

I have been having pain in both of my thighs for about 4 months , started after my 3 rd cycle of TCH and been asking doctors about the pain. No one paid attention.

My pain got worse 2 months after finishing the chemo, finally I convinced my pcp to do MRI and looks like I have Mets in both of my thigh bones ( Femur)

I 'm scared because I may have turned from HER 2 + to TNBC.

I may have to go through bone biopsy after scans are done.seeing MO tomorrow.

please guide me. scared and worried not for me but more for my husband. We both are in 70s

And lot of stress on him caring for m

Thanks

Docy Dx 12/2/2020, IDC, Left, 1cm, Stage IIB, Grade 2, 1/5 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 12/20/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/13/2021 Lumpectomy: Left Targeted Therapy 6/16/2021 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 6/21/2021 Whole-breast: Breast, Lymph nodes
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Jun 30, 2021 08:41PM Olma61 wrote:

hi docy- why do you believe that your receptor status has changed to TNBC?

If you’re worried about the bone biopsy procedure itself - try not to be. It isn’t as bad as it may sound. You’ll have anesthesia and it is over quickly.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Jun 30, 2021 08:51PM cyathea wrote:

Hi Docy, I’m sorry to hear this news.

I don’t have bone mets in my femur, but like you, I had a bone mets progression very early (actually found after my second round of chemo). Give yourself some space and time to process this and know that it does get easier.

Why do you think you have switched from HER2+ to TNBC? Since you are on Kadcyla, it seems like your MO still thinks you are HER2+. My MO also started me on Kadcyla after chemo, but I didn’t tolerate it well, so he let me just do Herceptin and Tamoxifen. Many people do very well on Kadcyla, and my MO was/is very optimistic about it’s ability to keep the mets under control. If my spine met progressed, I would be willing to go back on Kadcyla.

My MO also encouraged me when the spine met was found by saying that he has lots of treatment options at his disposal. Based on my research, I don’t think he was “sugar coating” things. There really are lots of options at the beginning of this disease. I try to focus on the present (not easy, but it helps).

This was not the retirement that you and your husband planned, but I hope you are one of the people who does really well on the treatment and gets decades of additional time to be with family. Check out the long term bone mets thrivers on this forum; it’s very helpful and comforting

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 10/9/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/18/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/16/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/21/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Jun 30, 2021 08:51PM star2017 wrote:

Hi Docy, I agree with Olma that the bone biopsy is not so bad. I hope it will be easy for you. I'm so sorry that the doctors didn't take your pain seriously. That is so frustrating. Now that it is identified, lets hope a new treatment plan will help.

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 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 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy 8/4/2021 Verzenio Targeted Therapy Lynparza Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant)
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Jun 30, 2021 09:30PM Docy wrote:

thank you Cynthea and star 2017 for your kind words and encouragement.

Cynthea, I had weakly positive HER2 by FISHtest, breast tumor responded completely with TCH, but had micrometastasis in lymph node, That was neg for HER 2, by FISH test. That is why I definitely need bone bx. If i have TNBC.

My case has been mis managed from the beginning. My doctors never did lymph node bx and tagging on positive 2 lymph nodes on Scans. The sentinel nodes that were removed had micrometastasis in one out of 5.

So we do not know if the surgeon got those positive nodes that were seen on scan.
I took 3 opinions. One said I should have ALND and other 2 said, radiation. So I chose radiation.



Docy Dx 12/2/2020, IDC, Left, 1cm, Stage IIB, Grade 2, 1/5 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 12/20/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/13/2021 Lumpectomy: Left Targeted Therapy 6/16/2021 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 6/21/2021 Whole-breast: Breast, Lymph nodes
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Jul 1, 2021 07:26AM KBL wrote:

Docy, I’m sorry you find yourself here. I want to let you know I’m also one who was not diagnosed immediately. Long story short, it took six years to even identify what was storming through my bones and bone marrow, until it finally spread to my stomach. I have cancer through my whole skeleton, including my skull and down to my femurs, as well as my stomach. I was diagnosed Stage IV from the get go and have been on treatment for two years. I want to give you hope. It will be eight years in August for me since I was first told it looked like I had metastatic cancer. I’m still here. Hugs to you.

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 9/26/2021 Xeloda (capecitabine)
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Jul 1, 2021 10:52AM BevJen wrote:

Docy,

You may want to consult with an oncological orthopedist regarding the cancer in the femur. I had this in both femurs, and it arose rather suddenly after I was on immunotherapy for a short time. An oncological orthopedist can advise as to how serious any injury is and whether surgery might be appropriate. Not trying to scare you -- just trying to make sure that you don't solely rely on your MO for this.

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) 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 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC 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 Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Jul 1, 2021 11:02AM GoKale4320 wrote:

Hi Docy- please do not fret about the bone biopsy. They give you plenty of pain relief and relaxing medicine.

As for the lymph nodes they left behind, that might actually work in your favor. Because the lymph nodes are important for the immune system. The chemo you received should help those affected nodes.

Radiation for the bones should help you with reducing the pain. It helped the bone mets in my hips a lot.


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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Jul 1, 2021 12:27PM Docy wrote:

KBL,BevJen,GoKale,

Thank you all for your response.

I will definitely ask for oncological ortho, great suggestion.

Hoping I can continue on Kadcyla , target therapy for HER2 not on big guns such as AC. I do not know if I will tolerate another round of strong chemo at my age.

I finally feel that I have come to terms with this cancer and ride along what ever it brings.

Thanks again.

Hugs

Docy Dx 12/2/2020, IDC, Left, 1cm, Stage IIB, Grade 2, 1/5 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 12/20/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/13/2021 Lumpectomy: Left Targeted Therapy 6/16/2021 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 6/21/2021 Whole-breast: Breast, Lymph nodes
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Jul 1, 2021 01:02PM carolina_girl63 wrote:

Well ladies I had the bone biopsy yesterday and it was no fun! Apparently the fentanyl and versed combo does not work great for me. I felt pain even though they gave me a little extra when I said that I could feel it. Later the radiologist was surprised that I said I was awake and could hear them and could feel it. He said that I got so quiet that he thought I was asleep. Well, no I was not!. I was just trying to lie really still since there was a needle in my back. What I would like to know from those of you who have had the procedure is what kind of pain you had after. I have been in quite a bit of pain since right after the procedure. I can't even take a deep breath without awful pain. Last night I had little sleep. I could not find a position that I didn't have any pain. Anyone else have this??

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Jul 1, 2021 01:18PM Sunshine99 wrote:

Carolina, I'm so sorry the procedure was rough on you. Mine was on T4 of my spine. Was yours on your femur? Tylenol seemed to help my after-procedure discomfort,

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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Jul 1, 2021 01:36PM GoKale4320 wrote:

Carolina-girl 63 - My bone biopsy was in my sacrum so it was sort of on my very lower back to one side. So breathing did not cause me pain. I think I took Tramodol for the pain. I suggest calling your MO to see what they suggest for pain. My MO said he doesn't want me to just "suffer through" pain if it can be helped with meds. I think it's also suggested to take pain medicine before it gets too bad; better to stop the pain before it gets too high of a level.


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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Jul 1, 2021 01:54PM carolina_girl63 wrote:

Sunshine99 It was on my T11. So just about center of my back. So far over the counter has not helped. But hoping in a day or two the pain will subside. I was honestly so surprised that the little "cocktail" they gave me did not work or make me sleepy. Usually anything like that works really well for me.

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Jul 1, 2021 07:28PM star2017 wrote:

I didn't have much pain after my biopsy, maybe a little more than was already happening. However, my biopsy was on the pelvic bone.


Turns out I had my bone med wrong -- the MO is recommending Xgeva, not Zometa. I'm still worried about the ONJ, but the MO feels pretty strongly I should take Xgeva. I just wonder if I really need it. I will be seeing my orthopedic oncologist next week, and may bring it up to him too. My guess is he will agree with the MO. I guess it's time for some dental check ups!

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 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 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy 8/4/2021 Verzenio Targeted Therapy Lynparza Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant)
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Jul 1, 2021 08:34PM buttonsmachine wrote:

star, those drugs do help prevent fractures and breaks that might happen because of the cancer. I think whether it's worth it partly depends on how extensive your bone mets are, and how fast growing they are.

For me, I've been on Xgeva for a while with no side effects. However, I still have some worrying progression in my bones - I'd hate to think about how much worse it would be if I were NOT on Xgeva. But that's just my situation. Others here are very stable with limited bone involvement, and these bone meds might be overkill for them. 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 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole-breast Hormonal Therapy 3/31/2017 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 1/14/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Jul 1, 2021 09:09PM star2017 wrote:

Thank you for the insight, buttonsmachine. It's very helpful. I wish you the best.

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 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 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy 8/4/2021 Verzenio Targeted Therapy Lynparza Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant)
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Jul 2, 2021 08:12AM NicoleRod wrote:

My MO and I will not do bone biospy they are not reliable enough so I cant help you there....sorry you had pain.

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 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jul 2, 2021 08:47AM JoynerL wrote:

Do y, 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 1/1/1991 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Saline implant Chemotherapy 1/14/1991 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 1/8/2019 External: Bone Chemotherapy 1/16/2019 Xeloda (capecitabine) Radiation Therapy 10/26/2020 External: Lymph nodes
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Jul 2, 2021 12:14PM S3K5 wrote:

Nicole, why do you say "My MO and I will not do bone biopsy they are not reliable enough"? Did your MO say that they are not reliable?

Bone biopsy was the only way they could confirm about my metastases to the bone.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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Jul 2, 2021 12:19PM NicoleRod wrote:

all the research I have done...shows that bone biopsy are not nearly as accurate as soft tissue...My MO agrees based on the fact that she has done thousands of each. That doesn't mean she wouldn't do it...but would prefer soft tissue and I would as well.

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 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jul 2, 2021 09:38PM RK2020 wrote:

NicoleRod - Many of us are bone mets only so a bone biopsy is the only option.

Dx 5/2016, IDC, Right, 1cm, Stage IIA, Grade 3, ER+/PR+, HER2- Chemotherapy 6/19/2016 AC + T (Taxol) Hormonal Therapy 12/31/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/2020, IDC, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 3/10/2020 Faslodex (fulvestrant) Targeted Therapy 3/26/2020 Ibrance (palbociclib) Radiation Therapy External: Bone
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Jul 3, 2021 12:01AM Nkb wrote:

Bone biopsies have gotten better also- they use a different method to decalcify the bone. I did hear that they were not very accurate as far as PR goes- and they did read mine as unsure if PR-.

I had the bone biopsy in the front hip bone- no pain during the procedure just felt the pressure. did puke afterwards but, went home without pain meds. so sorry you had such a bad experience.

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+ Surgery 2/4/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/28/2012 AC + T (Taxol) Radiation Therapy 9/11/2012 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)
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Jul 3, 2021 02:09AM - edited Jul 3, 2021 02:09AM by Olma61

Agree about the PR possibly not being accurate, my breast sample was highly PR+ but the bone sample was zero. If you only have bone mets though, they test to confirm what they saw on a scan. I can see it being easier to get a good sample from the soft tissue compared to bone, if you do have other mets,though.

About pain, my bone biopsy was supposed to be to my L1 vertebrae and right hip. When it was over I had sharp pain in my left hip. They got the spine sample but were unable to get the sample from my hip and I really suspect they stuck me in the wrong place - probably harder to pierce healthy bone with a needle compared to a cancer lesion. The anesthesiologist came in and asked how I was feeling and I said why does my left hip hurt. He said no they stuck you on the right. Doubt it. Anyway, the pain didn't last thankfully. Hip and back were a little sore for a day or two that's it

Hope anyone hurting from this procedure gets some rest and quick relief.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Jul 5, 2021 03:17PM Jsniffs wrote:

Hi all - question for this group - In the metastatic setting (especially oligomets to bone), has anyone gone from using Letrozole only (not counting bone strengthener) to Fulvestrant/Faslodex only (no Ibrance/Kisqali/Verzenio)? One doctor I see said they wanted to possibly keep the CDK 4/6 inhibitors (Ibrance/Kisqali/Verzenio) on reserve. Another one said to hit the oligomets aggressively with systemic treatment using a CDK 4/6 inhibitor. I know the standard of care is to add Ibrance or equivalent. I'm currently planning to add Ibrance, but I'm curious if anyone went from Letrozole (or another AI) to Faslodex without a CDK 4/6 inh. and had a good experience?

Thanks!

Original dx at 36 while pregnant. My daughter and family give me hope. You never know what you can get through until you have to. Dx 1/2016, IDC, Right, Stage IIIA, 7/39 nodes, ER+/PR+, HER2- (IHC) Dx 12/2018, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 1/15/2019 Femara (letrozole) Radiation Therapy 9/1/2019 External: Bone Dx 4/2021, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 5/31/2021 External: Bone Hormonal Therapy 6/15/2021 Faslodex (fulvestrant) Targeted Therapy 8/1/2021 Ibrance (palbociclib)
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Jul 5, 2021 03:51PM Sadiesservant wrote:

Hi Jsniffs,

Not quite what you are asking but close in my case. I started out on Arimidex, adding Ibrance. Unfortunately, my body couldn't tolerate the Ibrance as I ended up with severe anemia. When I had progression I had a brief stop on Xeloda and then my MO put me on Faslodex which I was on for 20 months. The median progression free period on Faslodex is about 8 months so, when Verzenio came available in Canada, I decided to layer that on. I was concerned that if Faslodex failed I would not be able to access Verzenio as a monotherapy. I remained on that combo for another 14 months before spread to my liver.

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) Chemotherapy 10/8/2021 Navelbine (vinorelbine) Chemotherapy 1/7/2022 Halaven (eribulin)

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