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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 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.

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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Oct 1, 2021 11:04AM GoKale4320 wrote:

Sunnidays - thanks for shedding some light on nutrition. I think we all hear different things from our doctors so it's nice to compare notes sometimes

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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Oct 1, 2021 12:37PM - edited Oct 1, 2021 12:38PM by Bmpntherd

so apparently these are healing mets, not active ones. If your therapy is working the bone scan done 3-6 months can show increased uptake because of isteoblastic healing. This occurs in about 20% The only way to know for sure is to see improvement on a f/u study in 3 months. I feel GREAT wi improved pain and stiffness. My largest lesion had a soft tissue mass associated with it and was both lyric and sclerotic. Now the mass is gone and the entire lesion is sclerotic- I take this as positive. Hate UNclear medicine Use a lot of judgement in interpreting these stidie

Chemotherapy 1/1/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 10/13/2014, IDC, 3cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 10/19/2014 Mastectomy: Left Dx 3/9/2021, IDC, Stage IV, metastasized to bone/liver/lungs/other, ER+/PR+, HER2- Chemotherapy 6/10/2021 Taxol (paclitaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal Radiation Therapy External Hormonal Therapy Arimidex (anastrozole) Targeted Therapy Verzenio
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Oct 1, 2021 10:33PM Positive2strong wrote:

Beth,

Will you also take Ibrance. I also have had 3 x shots of Faslodex and go on Monday for 4th. mine was so irregular with my surgery. I started then stopped then started again.
I get so little info from onc ….when I asked how many Mets she just said multiple we don’t countthem

Dx 8/23/2016, IDC: Mucinous, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR-, HER2- Surgery 10/9/2016 Lumpectomy: Right; Lymph node removal: Sentinel Dx 6/22/2021, Stage IV, metastasized to bone/liver/lungs, ER+ Radiation Therapy
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Oct 2, 2021 08:15AM Sunshine99 wrote:

I have a question: This was in the comments section of my recent nuclear med bone scan.

FINDINGS: When compared to prior examination, once again identified are multifocal areas of increased activity involving the spine at T6, T8, T9 and L5, as well as ribs involving right posterior first rib, left third, seventh, eighth and ninth ribs, and left fourth rib anteriorly as well as L5 vertebral body to the left of midline and left hip acetabular region on keeping with bony metastatic disease. In fact when correlated with the CT exam, there is significantly more sclerotic bony metastatic lesions however these are metastatic lesions that appear to be metabolically active. There also is focal area of activity noted within the right proximal numerus also likely an additional bone metastasis. Compared with the prior examination, there likely is not significant interval change.

This report is a little confusing. "Significantly more sclerotic bony metastatic lesions...appear to be metabolically active." And the comment "Likely not a significant interval change."

Any comments on this? The call from the MO's office said scans were stable.

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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Oct 2, 2021 09:04AM BevJen wrote:

This is why I hate these stupid nuclear bone scans. I've yet to read one that makes total sense.

I would be puzzled too. From my questioning of my oncologist. sclerotic means "healing." But the "metabolically active" stuff would make me think that that's not the case. As for the "likely not a significant interval change," I would guess that was a radiologist's CYA play --

I hope someone else can weigh in. As I said, I find these nuclear bone scans ridiculous.

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 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) 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 Immunotherapy
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Oct 2, 2021 09:54AM illimae wrote:

Bevjen, personally, I would consider that activity as part of it healing. In my experience so far, especially with bone scans, any sign of progression is documented as “suspicious” or “likely” to be active disease and is noted to be followed up. But, can you message your MO to explain that note in greater detail?

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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Oct 2, 2021 10:57AM beth1965 wrote:

Positive2strong - my doctor wants me to do fasolex shots with ribociclib not sure if i am spelling it right. She said it is similar to Ibrance she just preers it not sure what the difference is. Then hopefully the bone strenghthener soon as i seem to be breaking alot.

Looking for hope Dx 1/18/2012, ILC, Left, 6cm+, Stage IIIC, Grade 3, 17/29 nodes, ER+/PR-, HER2- Surgery 2/13/2012 Mastectomy: Left, Right Chemotherapy 3/5/2012 AC + T (Taxol) Radiation Therapy 8/12/2012 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/18/2012 Arimidex (anastrozole) Dx 8/8/2021, ILC, Stage IV, metastasized to bone Hormonal Therapy 8/19/2021 Faslodex (fulvestrant) Targeted Therapy 10/14/2021 Kisqali Targeted Therapy
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Oct 2, 2021 10:59AM Sadiesservant wrote:

Just to clarify, not all sclerotic mets are healing. In my case, I have only ever had sclerotic mets which have, at times, progressed. Bone scans, however, are completely useless for me as, for whatever reason, my mets don’t show up but on CT? Whoa! My theory is that it’s the nature of my slower growing cancer.

Not to say that it isn’t healing in your case Sunshine. The report does seem to indicate stable disease. Yeah!

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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Oct 3, 2021 03:23PM NewDay123 wrote:

I guess I don't want to get the scan or go into any medical locations right now. The staff are all only wearing loose surgical masks, no one is wearing N95 or better. Delta is suppose to be easier to transmit. :(

Update: Feeling kind of stupid, but what I thought was bad muscle/bone issues is really (not a doctor, my guess only, and seems accurate) is very bad lactic acid build up not just in the muscle but in the body. So, extra tired and brain fog. Apparently, one's lactic acid threshold can be reduced, and not like when we were young, the recovery is a lot faster and the lactic acid build up is less noticeable. Hope this might be helpful info.

Currently: Ribociclib, Fulvestran, Zolodex Dx 2016, Stage IIIB Dx 2021, Stage IV, metastasized to bone
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Oct 4, 2021 06:33AM GoKale4320 wrote:

Sunshine - I like what Mae said. So sounds like a pretty good report, and if your doc also thinks it's pretty good, then I would go with that.

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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Oct 4, 2021 08:41AM Sunshine99 wrote:

Thanks, everyone. I'll probably ask about it at my next visit, but I know if it were a big deal, she'd have called me personally.

Looks like I'm good until December 15 when I have my next set of scans. Time to get my car repainted. YAY! :)


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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Oct 6, 2021 11:38AM beth1965 wrote:

wondering if anyone else had this

I had sore neck area and one shoulder few days then I woke up in unbelievable pain Went to emergency pain is so bad I can’t stand or stay sitting up pain is too bad

Staying in hospital lots of pain meds and going to transport me everyday for radiation on Mets in this area

I literally am bedridden at moment this is worrying me. Just wondered if anyone else had this happen


Looking for hope Dx 1/18/2012, ILC, Left, 6cm+, Stage IIIC, Grade 3, 17/29 nodes, ER+/PR-, HER2- Surgery 2/13/2012 Mastectomy: Left, Right Chemotherapy 3/5/2012 AC + T (Taxol) Radiation Therapy 8/12/2012 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/18/2012 Arimidex (anastrozole) Dx 8/8/2021, ILC, Stage IV, metastasized to bone Hormonal Therapy 8/19/2021 Faslodex (fulvestrant) Targeted Therapy 10/14/2021 Kisqali Targeted Therapy
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Oct 6, 2021 11:44AM moth wrote:

beth, sorry you're in pain. what did ths scans show? where are your mets - in the cervical spine?

I think if the met is pressing on the nerve it can be the cause of pain. I hope the rads start working quickly!

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Oct 6, 2021 12:32PM beth1965 wrote:

thanks moth

Yes I have a lot of Mets at top of spine and doctor said same thing as you about probably pressing on nerve

I am hoping I am fixable

Looking for hope Dx 1/18/2012, ILC, Left, 6cm+, Stage IIIC, Grade 3, 17/29 nodes, ER+/PR-, HER2- Surgery 2/13/2012 Mastectomy: Left, Right Chemotherapy 3/5/2012 AC + T (Taxol) Radiation Therapy 8/12/2012 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/18/2012 Arimidex (anastrozole) Dx 8/8/2021, ILC, Stage IV, metastasized to bone Hormonal Therapy 8/19/2021 Faslodex (fulvestrant) Targeted Therapy 10/14/2021 Kisqali Targeted Therapy
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Oct 6, 2021 12:44PM Sadiesservant wrote:

Hi Beth,

Sorry you are dealing with pain but I can say, from personal experience, that radiation is a god send. I have extensive bone mets and have had to have multiple zaps over the last four plus years. The last was November 2020 when I suddenly started having blinding headaches. Radiation to my c-spine and base of my skull took care of those headaches completely. I've had hip pain, sciatica - you name it. My RO is practically on speed dial. LOL.

Now I'm dealing with significant pain in my right shoulder blade with some issues in my right arm. It may be referred pain from the liver so I am waiting to see if chemo knocks it back. If not, I'll explore possible bone mets on the scapula (which I also have).

Hope you can get the pain under control soon.

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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Oct 6, 2021 01:22PM beth1965 wrote:

sadiesservant sounds like you have been through a lot so glad to hear rads helped so much definitely needed to hear that today

How long did it take for you to feel the relief with rads? Just wondering

Looking for hope Dx 1/18/2012, ILC, Left, 6cm+, Stage IIIC, Grade 3, 17/29 nodes, ER+/PR-, HER2- Surgery 2/13/2012 Mastectomy: Left, Right Chemotherapy 3/5/2012 AC + T (Taxol) Radiation Therapy 8/12/2012 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/18/2012 Arimidex (anastrozole) Dx 8/8/2021, ILC, Stage IV, metastasized to bone Hormonal Therapy 8/19/2021 Faslodex (fulvestrant) Targeted Therapy 10/14/2021 Kisqali Targeted Therapy
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Oct 6, 2021 01:48PM LGP1111 wrote:

Hi friends. I just today received confirmation of a 1.5 cm bone met to my left sacrum (IDC, 95% ER+, PR-, HER2-). I visit my oncologist tomorrow and am currently making list of questions and doing mad research in advance. If you have any words of wisdom or suggestions of must-ask questions, I would be so very grateful.

I previously had 3 yrs of Zometa (2x year). Ovaries have been out since 2014 and I've been on Tamoxifen ever since (although my onc and I revisited this every year and debated switching to an AI. Now I'm regretting that I didn't.)

I'm anticipating that I'll go on some type of AI plus a CDK inhibitor and possibly have radiation. Maybe also Xgeva?

Thank you so much. Putting good energy out into the universe for every single one of us.

Dx 12/22/2013, IDC, Right, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- (FISH) Surgery 1/2/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/2/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 2/24/2014 AC + T (Taxol) Radiation Therapy 7/7/2014 Breast, Lymph nodes Hormonal Therapy 8/17/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/15/2014 Prophylactic ovary removal Surgery 4/1/2015 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Dx 10/6/2021, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2- (FISH)
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Oct 6, 2021 02:13PM moth wrote:

LGP sorry you are joining us here in the stage IV group. That really sucks. Is your met painful? With only the one met, you are oligemetastatic and my only words of wisdom would be to read up on that and push for aggressive treatment at the outset (like SBRT for the met if you can get it), but that's just my opinion. Evidence on oligomets is still scant.

I think you're anticipating correctly and yes. they usually do want either a bisphosphonate or xgeva for bone strengthening when there are bone mets.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Oct 6, 2021 02:47PM Sadiesservant wrote:

Beth, my pain relief was almost immediate in most cases. It was rather miraculous really. Killed the little blighters and took pressure off of nerves. It does depend a bit on the location. In some cases there is a bit of pain from the procedure which takes a few days to resolve but overall I have had really good experiences with radiation. (I should say that in the case of the cervical mets I lost my sense of taste for about two months... that sucked... but it did come back.)

LGP, sorry you are joining us. I agree with Moth, I would push for radiation for that met to try to eliminate it. And don't beat yourself up about not switching hormone therapies. There is no way to know if it would have made any difference and you clearly threw everything at it with the chemo. Unfortunately, it's a crap shoot. I had almost 16 years between my initial stage 2 diagnosis and MBC. There is just no way to know. Wishing you good success with the bone met.

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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Oct 6, 2021 03:02PM - edited Oct 6, 2021 03:06PM by LGP1111

moth - Thank you so much -- I really appreciate the insight. I will read up more on that. My very best to you!

Dx 12/22/2013, IDC, Right, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- (FISH) Surgery 1/2/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/2/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 2/24/2014 AC + T (Taxol) Radiation Therapy 7/7/2014 Breast, Lymph nodes Hormonal Therapy 8/17/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/15/2014 Prophylactic ovary removal Surgery 4/1/2015 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Dx 10/6/2021, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2- (FISH)
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Oct 6, 2021 03:05PM LGP1111 wrote:

Sadiesservant - thank you so much! Appreciate the kind words. It's hard not to replay everything all of us do/have done to prevent a recurrence and not ask 'What did I miss?' It's crazy making. But you're right, it's a crap shoot. Take good care.

Dx 12/22/2013, IDC, Right, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- (FISH) Surgery 1/2/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/2/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 2/24/2014 AC + T (Taxol) Radiation Therapy 7/7/2014 Breast, Lymph nodes Hormonal Therapy 8/17/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/15/2014 Prophylactic ovary removal Surgery 4/1/2015 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Dx 10/6/2021, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2- (FISH)
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Oct 6, 2021 05:05PM Katyblu wrote:

LGP, so sorry you’re here with us but welcome! The ladies here are wonderful and full of advice and understanding. I hope you get all your questions answered. Good luck at your MO tomorrow, we’ll be thinking about you

Dx 5/3/2017, ILC, Right, 5cm, Stage IIIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- Surgery 5/16/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 6/21/2017 AC + T (Taxotere) Dx 8/19/2021, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 9/10/2021 Arimidex (anastrozole) Targeted Therapy 9/10/2021 Ibrance (palbociclib) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Oct 6, 2021 05:05PM beth1965 wrote:

Sadiesservant thanks so much for the reply that is amazing news even to know there is a chance I may feel relief quickly or some pain and loss of taste I can deal with if I know there is a light at the end of the tunnel where the pain goes away. I am glad to hear how well it went for you I really needed to hear this today

I am presently unable to stand or sit up for more than about 20 minutes and I am going a bit crazy lying here in the hospital I can do nothing but think cause I can’t move and have got myself all worked up with fear and frustration you taking the time to tell me this already has me in a totally different mindset good mindset feeling so much better thanks so much

❤️Bet

Looking for hope Dx 1/18/2012, ILC, Left, 6cm+, Stage IIIC, Grade 3, 17/29 nodes, ER+/PR-, HER2- Surgery 2/13/2012 Mastectomy: Left, Right Chemotherapy 3/5/2012 AC + T (Taxol) Radiation Therapy 8/12/2012 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/18/2012 Arimidex (anastrozole) Dx 8/8/2021, ILC, Stage IV, metastasized to bone Hormonal Therapy 8/19/2021 Faslodex (fulvestrant) Targeted Therapy 10/14/2021 Kisqali Targeted Therapy
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Oct 6, 2021 05:55PM Sadiesservant wrote:

I’m glad to hear you are feeling a bit more optimistic Beth. I can’t say that I have ever been as bad as you seem to be at the moment but the body is a funny thing. It kind of cascades when we have a problem in one area, mushrooming into a “whole body experience”. Your muscles will try to compensate, often not very effectively. Next thing you know…. oy vey!

Hopefully your team will get on top of the pain and find a way to deal with the cause. Hugs

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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Oct 6, 2021 06:40PM beth1965 wrote:

lgp

This is the best place be everyone here is helpful kind and understands what your going through

I am still pretty new to Mets DX and it is hard to get used to so sorry you are here

Looking for hope Dx 1/18/2012, ILC, Left, 6cm+, Stage IIIC, Grade 3, 17/29 nodes, ER+/PR-, HER2- Surgery 2/13/2012 Mastectomy: Left, Right Chemotherapy 3/5/2012 AC + T (Taxol) Radiation Therapy 8/12/2012 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/18/2012 Arimidex (anastrozole) Dx 8/8/2021, ILC, Stage IV, metastasized to bone Hormonal Therapy 8/19/2021 Faslodex (fulvestrant) Targeted Therapy 10/14/2021 Kisqali Targeted Therapy
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Oct 6, 2021 08:47PM LGP1111 wrote:

Katyblu and beth1965 -- thank you both. Your kindness means so much.

Dx 12/22/2013, IDC, Right, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- (FISH) Surgery 1/2/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/2/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 2/24/2014 AC + T (Taxol) Radiation Therapy 7/7/2014 Breast, Lymph nodes Hormonal Therapy 8/17/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/15/2014 Prophylactic ovary removal Surgery 4/1/2015 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Dx 10/6/2021, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2- (FISH)
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Oct 7, 2021 05:24PM - edited Oct 7, 2021 05:26PM by prairiesea

Things have been very hectic so I've just been reading lately....welcome to new folks like Beth, LGP. Beth I was shocked like everyone at your awful palliative care doctor who doesn't seem to understand his own field. And sorry for all your pain, I hope they find a source and a solution soon!

I had a lovely hiking vacation during which I took 3 days off Verzenio, so thanks to all of you who encouraged that. Paying for it now by being behind at work, but totally worth it. My ANC and WBC bounced back amazingly, almost to over 1.0. But Onc wants me to stay on top dose because he thinks the cancer's interference w/ my bone marrow means anything will tank my numbers. When he laid out the alternatives of going on med regimes that seemed less likely to be effective I thought, well, I'll put up with this awhile, be as careful as I can. BUT that was when he also agreed to do a PET CT, last one was 8 months ago during diagnosis when they still were thinking Multiple Myeloma. Then the $*#* insurance company denied it, saying "Your records show that you have been treated for cancer in your breast(s)" and "Your records do not show results of recent standard picture studies that were unclear." What does this insurance company MD not understand about having MBC, and what I understand as the standard monitoring? In fact I am being treated not for cancer in my breasts but for systemically for the whole disease, which has been mainly in my bones. I have been in treatment (on and off admittedly with med changes, but still) for 6 months. Isn't this a standard time for a re-scan.? Any similar experiences and what to do would be welcome.

I'm kind of holding off as I have an appointment with MO in a week and a half and figure we can take it up then. But I'm worried that he hasn't been particularly valiant about going up against the insurance company before (when they turned down Foundation One, again allegedly because they were sure I had a firm diagnosis that was wrong). I feel this is so ridiculously misconceived it must be easy to fix....also that they obviously didn't look all that carefully into my records. Without any scans it's kind of hard to evaluate how necessary it is to keep taking meds that tank my wbc.

Sigh....anyway, in brighter news, 7 of my childhood friends that I still keep in touch with are coming to visit next week (we're renting a house a couple miles from mine). Got to get all my midterm grading done so I can just bask in their care and concern.....

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Oct 7, 2021 05:41PM moth wrote:

prairiesea, fwiw, I get a CT and nuclear bone scan every 3 months.

If you haven't had a scan since initial dx & starting treatment that is very concerning IMO.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Oct 7, 2021 07:28PM emac877 wrote:

Prairiesea - I agree with Moth. I also get either a bone scan or a CT scan, sometimes both, every 4 months and meet with my MO on that same schedule. So I agree that seems concerning. Is there a nurse navigator or case manager either with your MOs office or the insurance company you could work with? I know each company is different but many of them hire case managers who are usually RNs or someone with medical background to look into your medical record and look for things that may be incorrect and help patients navigate the complexities of insurance. That might be something to investigate.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/22/2018 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Chemotherapy 6/8/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/26/2018 Whole-breast: Breast, Chest wall Dx 12/4/2019, IDC, Stage IV, metastasized to bone Radiation Therapy 12/23/2019 External: Bone Surgery 12/31/2019 Hormonal Therapy 1/6/2020 Faslodex (fulvestrant) Targeted Therapy 1/7/2020 Verzenio Hormonal Therapy 12/9/2020 Aromasin (exemestane) Hormonal Therapy 6/23/2021 Faslodex (fulvestrant)
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Oct 7, 2021 07:41PM - edited Oct 8, 2021 12:26PM by Snow-drop

prairiesea, I am glad you had a good time. you are not alone with insurance headaches, after 2 years stupid insurance md denied my scans, he didn't bother to review my documents, don't know in which fantasy world this dumb circulates...

I hate to see those clueless outdated male physicians -who kicked out their practices btw- made their way to insurance companies and downgrade breast cancer as non important disease, I wanted to write him what about prostat cancer duh? With all of those, I blame pink October more than ever, this movement brain washes public opinion about BC to a girlie pinkie simple thing, in another thread someone commented breast cancer isn't pretty and pink, it's ugly and black...

De Novo stage IV Dx 9/2019, IDC, Left, 4cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (IHC) Radiation Therapy External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Zoladex (goserelin)

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