Topic: Bone Mets Thread

Forum: Stage IV/Metastatic Breast Cancer — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Jun 22, 2012 01:09AM - edited Oct 28, 2021 12:22PM by moderators

Posted on: Jun 22, 2012 01:09AM - edited Oct 28, 2021 12:22PM by moderators

Jac53 wrote:

I've started this thread after suggestions that it would be useful.

Mod Note: We have removed the original link as it is no longer viable. At one of our member's' recommendation we are offering this link as a resource for you.

Jeannie. "You only live once, but if you do it right, once is enough." Dx 6/19/1995, 10/15 nodes Dx 2/18/2011, Stage IV, mets, ER+/PR+, HER2- Dx 7/2/2012, Stage IV, mets, ER+/PR+, HER2-
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Sep 20, 2015 09:24AM aoibheann wrote:

rnspark, I have innumerable bone mets everywhere - skull, spine, ribs, pelvis, hips, arms, plus 4 compression fractures in my spine, several 'old' rib fractures, pelvic fracture, had a pin inserted in humerus - but I think my mets are mainly lytic. I have alot of pain both nerve and bone but tbh I can't tell the difference, it's a question of seeing how I repond to meds. I'm finding things more painful these days but whether that's a response (I hope) to femara and faslodex or something more sinister I don't know.

Gaia0132, I've never been told the size or number of my tumors or whether any of my bone lesions were healing. I've got to stable (touch wood) and my scans basically say' multiple bone lesions, no change, stable'. I'm on Zometa, originally it was every month, now it's every three months. The infusion normally lasts twenty minutes and I usually feel achy for a couple of days after. I wouldn't dare ask to have a longer infusion in my cancer centre, I feel a nuisance as it is.

Dx 8/20/2012, IDC, Stage IV, mets, ER+, HER2- Radiation Therapy 8/21/2012 Local Metastases 8/21/2012 Radiation therapy: Bone Hormonal Therapy 9/12/2012 Aromasin (exemestane) Hormonal Therapy 9/12/2012 Faslodex (fulvestrant) Radiation Therapy 10/1/2012 Local Metastases 10/1/2012 Radiation therapy: Bone Radiation Therapy 12/6/2012 Local Metastases 12/6/2012 Radiation therapy: Bone Chemotherapy 1/7/2013 Taxol (paclitaxel) Hormonal Therapy 4/29/2015 Femara (letrozole) Hormonal Therapy 5/21/2015 Faslodex (fulvestrant)
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Sep 20, 2015 11:25AM dlb823 wrote:

msparki, I also have diffuse and extensive bone mets. Without pulling out a report for the exact wording, what 50sgirl wrote sounds exactly like my situation. In fact, I smiled when I read her post b'cuz our radiologists use the exact same wording (which does seem to vary from facility to facility), as if they'd probably gone to the same med school.

It's interesting to me that so many of us are in this situation, which I didn't realize until msparki asked the question. I guess I thought there were a lot more who had a met here and a met there, as opposed to the scattered and diffuse scenario.

Hope everyone's having a good weekend! I had a relatively "normal" day yesterday. Was able to accompany my hubby to an out-of-town board meeting, did some antiquing in that area (about 120 miles away), and wasn't too much the worse for wear & tear after a full and busy day, although I did sleep in this a.m. We're headed out shortly to look for some bedding plants (we're in SoCa, so coming off a hot summer and into planting season). So very thankful for ordinary days!!!

Hugs to all, especially msparki who came out of lurking mode, and others who don't post often! Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Sep 20, 2015 11:38AM Bosco19 wrote:


Shopping was fun but expensive! I have lost over 20 kgs in weight since this began (much needed) so none of my clothes really fit - I was working my way back down the sizes as I had hoarded a lot of clothes but realised I couldn't carry on like that. So a spree was required - 2 coats, a dress and a skirt. Will probably also take a suit as well but ran out of time to try things on. Have spent today emptying closets of old clothes for the charity shop - no more hoarding! Need to lie down after all that

Good rest of Sunday to all

Mets to brain, bone and lymph nodes Dx 1/18/2013, IDC, Right, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Chemotherapy 2/3/2013 Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Surgery 4/11/2013 Lumpectomy: Right Radiation Therapy 5/6/2013 Breast Chemotherapy 7/14/2013 CMF Chemotherapy 1/7/2014 Taxol (paclitaxel) Dx 6/25/2014, IDC, Stage IV, mets, ER-/PR-, HER2- Surgery 7/8/2014 Radiation Therapy 7/20/2014 Brain Chemotherapy 7/29/2014 Xeloda (capecitabine) Targeted Therapy 7/30/2014 Avastin (bevacizumab) Dx 12/12/2014, mets, ER-/PR-, HER2- Radiation Therapy 1/19/2015 Bone Chemotherapy 3/2/2015 Gemzar (gemcitabine) Dx 3/3/2015, 1/3 nodes, mets
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Sep 20, 2015 11:59AM - edited Sep 20, 2015 02:47PM by Xavo

All, happy Sunday!

Wendy thank you for your welcome. Now my turn to welcome Misparki!

Cheers to all the improvements in pain management and good results of scans (have to be general, can't go back to get the names)!

Misparki, I believe I also have very widespread bone mets. I so far have done two sets of scans (CT and bone scan for each set done by two hospitals reapectively ) since the diagnosis in the end of Feb. this year. They all just tell their own stories without commenting each other. So I have to treat them all as separated sections of the base-line imaging. Currently I do not have serious bone mets pain. But I do still have minor discomfort (a kind of mild burning sensation) mainly at the ribcage (lower sides). I used to have severe pain surrounding my lower ribcage, sternum, and right shoulder prior to my treatment three times. Each episode begun after a long walk. Then the severe pain subsided by itself after about 6 weeks every time. My only thoracic MRI taken last month revealed my T9 has deformity and shows mild compression fracture. So now I understood why I had the tree strange injury like incidences (I was very puzzled why a long walk would bring so much muscle pull like severe pain). It was that my T9 has fractured three times and got healed each time basically on its own. The repeated compressional fractures, or, the gradual compression, caused the T9 to deform. The current mild fracture shown is the remaining of the third episode which probably will not completely healed eventually due to the advance of the disease. So, my impression of the pains caused by our bone mats is that the mets on the surface of the bones more likely would not cause very much pain. Severe compression and fractures are the major reason for serious pains. Deeper, more eat-in lesions (lytic lesions) damaging the bones like knife cutting in probably also cause noticeable bone pains. However, the pain I understand belongs to the physical, substantial pain caused by the physical damages, which is simple and easier to manage. The field under the name of pain is vast and much more complicated and the complicated part is beyond my experience and understanding. So, my thinking here is worth only 2 cents.

I would assume MBC tends to spread in multi focal form, sometimes very tiny but in large number, if it is the latter, it is called diffuse. It is probably quite common to have both focal and diffuse bone mets at the same time (mine is in this group). It seems also common to have both lytic and sclerotic lesion types. Lytic lesions are the result of the rather aggressive cancer activities. If the offense of the cancer is aggressive, the bone has no time to counter but retreat, leaving a hollow to the cancer. When the offense of the cancer is less aggressive, the bones have the time to fight back by producing more of themselves, we have the sclerotic lesions present. Then the bone healing also takes the form of producing more of themselves. So the sclerotic phenomenon on the bone scan imaging could be both cancer lesions and healing. I was very much worried about my T9 compression fracture, because my onc decided not to do any immediate local treatment. I did ask for the procedures such as bone cement. My onc said the prognosis of the procedures for mets patients is not good. I have to guess it is because the damage will not stop after the procedures. Then the occasional dull pain surrounding the T9 became milder and milder. Now it is not really noticeable if there is any. I think I got my onc's reason. He probably assumed that my mets is not yet becoming aggressive, given it took 13 years to show themselves, so the bone might have the time to heal under the systematic treatment (I am taking daily Letrozol and monthly Zometa).

As for Zometa infusion, I had terrible reaction to the first dose (severe whole body shaking and shortness of breath caused by very high body temperature, ended up in the ER). Then my onc told me to take 2 Tylenol and 2 Advil together prior to the infusion and after every 6 hours for one or two days. I am doing that and free of problems. SE of Zometa for me is very minimal. Just some general mild ache in a couple of days after each infusion.

Good luck to the Zometa newbies!

Dx 12/2002, IDC, Left, 4cm, Stage IIB, Grade 3, 5/12 nodes, ER-/PR-, HER2- Surgery 1/1/2003 Mastectomy: Left Dx 2/27/2015, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Chemotherapy AC Radiation Therapy Chest wall
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Sep 20, 2015 02:44PM Xavo wrote:

I forgot to mention that all my sscan reports also did not provide numbers of the focal mets, nor their sizes. I was not happy about that. I thought the bones cannot be that large to contain uncountablely many focal mets for the reader. At least they could say around a certain number of spots, and the largest is of a certain size. I think using word such as numerous should be banned for scan reading. The tests cost thousands of dollars, they deserve more attention and finer treatment.

Dx 12/2002, IDC, Left, 4cm, Stage IIB, Grade 3, 5/12 nodes, ER-/PR-, HER2- Surgery 1/1/2003 Mastectomy: Left Dx 2/27/2015, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Chemotherapy AC Radiation Therapy Chest wall
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Sep 20, 2015 03:40PM gaia0132 wrote:

Hi Xavo

You seem to have a grip on some of the terms. Itoo think that there should be more standardized and specific ways of providing the report results. I may ask to have another radiologist read it, to see if the language could be more clear.

I think you are totally correct in wanting the reports to be handled in a 'finer' manner. Right there with you. basically my report described certain of the areas as 'large avid destructive' which I am thinking would be a description for lytic lesions....

I am in some fear while I await approval for the MRI because 2 of those areas are my R sacrum and the L3 vertebral body and Iam having shooing nerve pain since yesterday on the right side. Unfortunately, as a schooled massage therapist with lots of advanced anatomy, I am thinking 'bad thought's about compression.

I have ZERO bone pain, it's been just a moving target of something feeling of-was a weakness in my left leg for about two weeks and that has resolved and now it's this shooting pain...ugh

Thanks for listening

I truly hope that everyone is doing better today!

Dx 6/2015, IDC, Left, 5cm, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2+, Dx 8/2015, Stage IV, metastasized to bone Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Sep 20, 2015 04:59PM ChelleG wrote:

Thank you everyone for all of the info and tips! You all have made this so much more bearable to get through! I really do love you all!!!! I finally had my 13 year old (Katey) show me how to load a picture. It was taken last weekend. The little guy is my grandson. 5 year old Wyatt!

Dx stage IV de novo 9/10/2015 with bone mets. Dx 9/10/2015, ILC/IDC, Both breasts, 2cm, Stage IV, Grade 2, ER+/PR+, HER2- Dx 9/10/2015, ILC/IDC, Both breasts, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 9/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 20, 2015 06:52PM Kendrasue wrote:

txmom: Thank you for your beautiful comment about my fiance's brother and wife not getting it but loving me the best they can. It made a huge impact upon me. So much so that I let them know that we would try our best to drive to their home (2 1/2 hours, one way) for Thanksgiving Day, after all. I was shocked and delighted when his brother responded that they were both excited that I was coming and would like us to stay overnight at their home so we could drive home comfortably the next day. Sometimes it takes someone else to make us see what was initially difficult to see. Thank you for doing that for me. Love and hugs, Valerie

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Sep 20, 2015 07:14PM Kendrasue wrote:

50sgirl: Hi Lynne, I forget, too, who it was who said she's starting Zometa next week. I wrote that I'll be starting Xgeva next week (next Wednesday) but actually I'll also be very hydrated the day before and the day of, and after, as well as taking Claritin the day before and day of, because I just read it can possibly cause bone pain. However, I'm hearing that many women who are taking Xgeva have minimal, if any, SEs.

For anybody who is taking Xgeva shots (AmyQ?), I spoke on the phone to my onc's nurse who will be administering the shot. She initially absolutely refused to talk to me about having the shot in my tummy because they NEVER do it that way and my oncologist only wants it done in the arm, and she said it's more painful having the shot in the tummy. I wasn't happy with the conversation--an hour later she called back, and told me my onc said it would be fine to give me the shot in my tummy. My question now is, can I trust this nurse to know what she's doing? She's never given an Xgeva shot there. And, she's not happy about doing it. I'm apprehensive now. I hope it will go okay. Hugs to all, Valerie

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Sep 20, 2015 07:56PM kjones13 wrote:

Kendra--I have had xgeva shots for the last three years. I prefer in the arm only because I have had so many shots, it's kind of numb going in. I've had it in the tummy when I had a long sleeve shirt. Regardless of where you get it...make sure the nurse injects it SLOWLY! That will cut way down on pain. I've had a dozen different people give me the shot. It can be painful but it doesn't last long. Good luck and I hope it does the trick for you

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2- Surgery 10/9/2012 Lymph node removal; Lymph node removal (Right): Sentinel Targeted Therapy 10/17/2012 Herceptin (trastuzumab) Targeted Therapy 10/17/2012 Perjeta (pertuzumab) Chemotherapy 10/17/2012 Taxol (paclitaxel) Hormonal Therapy 3/1/2013 Surgery 10/24/2013 Mastectomy; Mastectomy (Right)

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