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Topic: Who else has mets to their spine?

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jun 2, 2016 08:04AM

Fitztwins wrote:

I am concerned about one spot. I had a MRI done, doctors wont do much unless I am in pain. I am worried about paralysis. Why let it get bad before doing something? UGH, I hate how sometimes metastatic cancer is a wait and see approach.

Any other experiences out there?

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/19/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 2/1/2005 AC + T (Taxol) Radiation Therapy 5/1/2005 Breast, Lymph nodes Targeted Therapy 6/1/2005 Herceptin (trastuzumab) Hormonal Therapy 1/1/2006 Femara (letrozole) Hormonal Therapy 6/2/2008 Aromasin (exemestane) Targeted Therapy 7/1/2008 Herceptin (trastuzumab) Hormonal Therapy 6/15/2013 Arimidex (anastrozole) Targeted Therapy 9/5/2015 Perjeta (pertuzumab)
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Jun 2, 2016 08:06AM Cafelovr wrote:

Fitz, I'm sending prayers and well wishes {{{hugsa}}}

Linda J Dx 10/19/2009, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 3, 2/2 nodes, mets, ER+/PR-, HER2+ Chemotherapy 11/23/2009 AC + T (Taxol) Targeted Therapy 1/22/2010 Herceptin (trastuzumab) Surgery 4/4/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 5/4/2010 Breast, Lymph nodes Hormonal Therapy 7/10/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/28/2011 Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 5/28/2013 Prophylactic ovary removal
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Jun 2, 2016 08:20AM JCNC wrote:

Hi Fitz,

I have mets to multiple vertebrae in my spine. Along with mets to the liver and bones. her 2+ so Been on taxol, herceptin and perjeta for the last 4 weeks. I just started this treatment about a month ago and was diagnosed with stage iv and mets from the get go. Not sure what the plan is for all of this and the spine in particular but will be on weekly taxol for 6 months along with the H & P every 3 weeks. Back has been bothering me a bit the past week or so and not sure if it's from the chemo, cancer , or just life with work and chasing around 2 young kids.

Would love to hear how things turn out and how you continue to feeland I hope all goes well with you!

Dx 4/23/2016, Right, 6cm+, Stage IV, metastasized to bone/liver/other, Grade 2, ER-/PR-, HER2+ Chemotherapy 5/4/2016 AC + T (Taxol) Targeted Therapy 5/5/2016 Herceptin (trastuzumab) Targeted Therapy 5/5/2016 Perjeta (pertuzumab) Hormonal Therapy
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Jun 2, 2016 08:37AM Bosco2602 wrote:

Hi, just about every vertebrae has a little bit of cancer in it. Two spots are worse then others and my onc said unless they are really bothering me they don't want to do anything to them. Sorry I'm not much help but just wanted you to know that my onc says the same as yours.

Dx 11/11/2015, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2+ Chemotherapy 11/20/2015 AC + T (Taxol) Targeted Therapy 11/20/2015 Herceptin (trastuzumab)
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Jun 2, 2016 09:07AM pajim wrote:

I have several spots on various parts of my spine. They come and go with the hormonal treatments. I asked the radiation oncologist once but he said "too many spots". So long as I'm not in pain, and the scans don't show any danger of fracture, they're not going to do anything,

Here are two reasons against radiation (from my onc): (1) the more you radiate the spine, the closer you get to the limit the nerves can take. I don't know whether that's in one spot or across the whole spine. (2) every time you radiate bone, you destroy bone marrow. And he says, "you're gonna need that marrow later" to tolerate chemotherapy.

You should start worrying if you get neurologic symptoms. Pain shooting down your leg, foot drop, weakness in your legs, etc. Anything that shows the cancer is pressing on the spinal nerves. If that happens, hie thyself to a doctor right away.

Enough with the info, I'm glad you are not in pain and I'm sending you hugs to try and make the problem smaller.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/27/2013 Femara (letrozole) Hormonal Therapy 4/22/2013 Faslodex (fulvestrant) Targeted Therapy 2/25/2016 Ibrance (palbociclib) Chemotherapy 6/19/2017 Xeloda (capecitabine)
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Jun 2, 2016 09:07AM Shutterbug73 wrote:

Yes, spinal mets here too. When I was first diagnosed I had two areas that were pretty bad. I had a lot of pain and I was limping (probably from the met to the sacrum). The biggest thing was I started to feel muscle weakness in one of my legs when I was walking down a hill or stairs. It felt like it was going to give out. They said it was just starting to get close to the spinal cord, but when I told them about the weakness they decided to do the radiation in the two areas that were the worst. They didn't want to wait see if the chemo would work first, but that meant that I couldn't have the chemo/H&P until the 15 rounds of radiation were complete.

I know we have a lifetime limit of radiation, so they may want to conserve that and use it only when necessary. Also, I think you would have to be off of other treatment while getting radiation, so that may not be ideal if you have mets to other areas. Is this spot getting worse? Do you have any discomfort?

I assume you are already on xgeva or a biophosphonate to help with bone density? I believe studies have shown that they also help inhibit bone mets.

All the best to you Fitz. I hope you know you are in inspiration to many of us here, me included!


“‎Life is a shipwreck, but we must not forget to sing in the lifeboats.” ― Voltaire Treatment summary: 9/15/14: Also began with Xgeva every 6 weeks. 12/29/14: Last Taxotere. 1/1/15 Changed Xgeva to every 3 months Dx 8/18/2014, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2+ Radiation Therapy 8/27/2014 Bone Targeted Therapy 9/14/2014 Herceptin (trastuzumab) Targeted Therapy 9/14/2014 Perjeta (pertuzumab) Chemotherapy 9/14/2014 Taxotere (docetaxel) Hormonal Therapy 1/19/2015
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Jun 2, 2016 09:27AM sandilee wrote:

Oh, yes, plenty of spinal mets. Five years ago that is how my mets presented. They found many mets throughout my spine, marrow and ribs, but what alerted me was that I was feeling numb in my lower body. My T3 was pressing on my spinal cord and cutting off neves. I had radiation to just that one spot (even though I had mets throughout) and miraculously, the numbness went away and that spot healed. Xgeva and Fadslodex kept all of my bone mets under control and reduced them a bit. I've moved on from Faslodex (when the mets moved to the liver) but my bone mets are still fairly stable after five years.

I know they are very careful about radiation near the spinal cord and will only do it if you are in pain or have some danger of it pressing on the cord. But you will know it if you do, either by pain, weakness or numbness. I wouldn't worry about paralysis if you have no symptoms and if you are getting regular MRIs, as they can see if the cord is compromised. I was getting them every six months- now just yearly, as they are more concerned about my liver so I get CTs to that area.

The bone marrow is where your blood cells are created, so damaging that is not something they will do unless it's necessary, and other treatments do work- it just takes more time.

It's always good to see you on the boards, Fitztwins!

- 4/2015- Mets to liver. 6/2011-Mets to spine, ribs, and skull, 6/2011 radiation, Xgeva and Faslodex 7/2011 Dx 11/2007, IDC, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Hormonal Therapy 1/10/2008 Aromasin (exemestane) Dx 6/2011, IDC, mets Radiation Therapy 6/30/2011 Bone Hormonal Therapy 7/15/2011 Faslodex (fulvestrant) Hormonal Therapy 4/10/2015 Femara (letrozole) Targeted Therapy 4/20/2015 Ibrance (palbociclib) Chemotherapy 8/4/2015 Xeloda (capecitabine) Hormonal Therapy 3/11/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/13/2016 Doxil (doxorubicin) Chemotherapy 4/4/2018 Navelbine (vinorelbine) Targeted Therapy 6/6/2018 Verzenio Hormonal Therapy 6/6/2018 Faslodex (fulvestrant)
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Jun 2, 2016 09:29AM susan_02143 wrote:

Spinal mets here too.... precarious locations, right at the bottom of the spine where the risk of paralysis is the greatest. However, they only want to radiate if there is pain. Radiation actually does weaken the bones a bit, at least for the short term, so they don't want to use that tool if not necessary. I have, reluctantly, agreed to Xgeva to counteract and strengthen, and my current treatment of Xeloda seems to be working. Last scan showed a huge decrease in activity.

My tumor load is still relatively small with just the spinal and rib mets, plus those pesky pleural suckers that started this whole show.

Wait and see if the new mantra isn't it?

*susan*

anotherplan.blogspot.com... and its back. May 3, 2010 mets found. Five years NED on Faslodex * 4/2015 progression to bone * 6/11/2015 Femara/Ibrance * 12/27/2015 Xeloda * 2/24/2016 Xgeva * another progression, another drug Taxol 2/14/2017 Dx 6/8/2005, IDC, 3cm, Stage IIB, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jun 2, 2016 10:01AM 3-16-2011 wrote:

hi fitztwins

I am another with spinal mets. My MO and RO were really worried about a lyric spot on my T10 vertebrae. But they have ignored a spot at the bottom of my spine. So where the met is matters. I would encourage you to ask about risk of spinal cord compression.

Because my recent radiation to my hip only increased pain, I am now gun shy about radiation. I do believe we all deserve to have any questions answered.

Wishing you peace

Mary

3-16-2011 Dx 3/16/2011, IDC, 2cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Chemotherapy 5/3/2011 AC + T (Taxol) Surgery 10/18/2011 Prophylactic ovary removal Radiation Therapy 11/10/2011 Surgery 10/10/2012 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Dx 11/5/2014, Stage IV, ER+/PR+ Hormonal Therapy 1/1/2015 Aromasin (exemestane)
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Jun 2, 2016 10:59AM Rosevalley wrote:

I too can join the chorus with cancer in the bones, spine and skull. There is one spot in my back that gives me lots of grief if I sit for too long. If I can change my position and have periods to lay down then I can manage. Sometimes I will medicate with oxy before long periods in the car. The radiologist mentioned the area in my back during 3 zaps to each femur head and the left shoulder. I was experiencing aching in the joints and was afraid my hips would give out. I was afraid of being in a wheel chair or unable to move if my hips went. I decided to do the radiation for pain control and it worked. My blood counts have stayed up and my ability to walk has increased. I continue to lose weight but that has been ok since I was over weight and losing has been a benefit. I was also afraid to radiate that spot in my thoracic area for fear of damaging the nerves. A wait and see approach has been a benefit. The zaps to kill cancer in the femur heads and humerus were successful. The pain was reduced, I take Xgeva and extra calcium.

I hope your boys and husband are all well. May your summer be lovely. Good luck Fitz may you skate through without issue.

Double mastectomy 07/ chemo ACT, Radiation/ 07 Arimidex, 08 Aromasin, 2012 Faslodex, 2014 Afinitor / mets spine, bones 6/2015 mets to omentum, malignant ascites, lung, liver/ 2016 Herceptin, Doxil, Faslodex. Ibrance, Taxol, Abraxane, Navelbine Dx 1/2/2007, ILC, 6cm+, Stage IIIA, Grade 1, 1/17 nodes, ER+/PR+, HER2- Dx 4/2/2012, ILC, 6cm+, Stage IV, Grade 1, 1/17 nodes, mets, ER+/PR+, HER2- Dx 6/1/2015, ILC, 6cm+, Stage IV, Grade 2, 1/17 nodes, ER+/PR+, HER2+ (FISH)
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Jun 2, 2016 11:13AM LindaE54 wrote:

Hi Fitz - I have cervical, thoracic and sacrum mets. MO said we don't do anything unless neurological symptoms appear or risk of compression/fracture or severe pain.

Linda - dx at 54. Decision to stop all treatments on 9 Jan 2018 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/liver/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/19/2013 External: Bone Hormonal Therapy 12/30/2013 Femara (letrozole) Hormonal Therapy 5/28/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/29/2014 External: Bone Radiation Therapy 8/28/2014 External: Bone Hormonal Therapy 9/25/2014 Femara (letrozole) Radiation Therapy 12/14/2014 External: Bone Hormonal Therapy 2/17/2017 Faslodex (fulvestrant) Chemotherapy 5/15/2017 Taxol (paclitaxel) Radiation Therapy 6/5/2017 External: Bone Chemotherapy 10/3/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
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Jun 2, 2016 05:30PM 50sgirl wrote:

Hi Fitztwins, I have mets in several vertebrae. I have not had radiation and will not have it unless I need it for pain.

Lynne

Dx 6/5/2015, IDC, Left, 3cm, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/25/2015 Arimidex (anastrozole) Dx 8/9/2016, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 1, ER+/PR+, HER2- Hormonal Therapy 8/10/2016 Faslodex (fulvestrant) Targeted Therapy 8/31/2016 Ibrance (palbociclib) Hormonal Therapy 7/3/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 2, 2016 05:52PM HLB wrote:

I have spinal mets and I went to Shands in Gainesville for SBRT radiation to 3 of them. At the time everything else was dormant but those three were acting up. The Dr down there is doing it if you have limited mets. It's very precise and I'm impressed with how they can get the whole tumor without any spinal damage. I didn't have any pain or symtoms. I was hoping I could go on my merry way for a few years that way but new small bone mets popped up in ribs and pelvis. When he looked at my MRI he was pointing out the areas and said that one was almost replaced by tumor (T6). I also had it to the lower back, 2 close together, T1 and L2 I think. Those mets are still resolved and will probably never come back to those areas. I vomited after the first treatment (5 total) and then the week after treatment I had esophagitis supposedly was mild but did not feel mild! But I have no lasting effects. It's hard to know what to do when the tumor threatens the spine but the rads might also threaten the spine. I had total trust in the Dr though and cannot say enough good about him and the whole facility. My onc did not want me to have it and is constantly checking for neurological symptoms.

Dx 10/2004, IDC, 1cm, Stage IIA, Grade 2, 2/11 nodes, ER+/PR+, HER2- Surgery 10/29/2004 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 11/29/2004 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 1/1/2005 AC + T (Taxol) Surgery 9/14/2005 Reconstruction (left); Reconstruction (right) Dx 7/23/2012, IDC, Stage IV Hormonal Therapy 7/23/2012 Femara (letrozole)
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Jun 2, 2016 06:33PM Iwrite wrote:

Hi Fitztwins and all,

Yep, bone mets here de novo seven months ago...spine, sternum, ribs, hips, shoulders. Letrozole and Ibrance plus Xgeva has been the treatment and the last two scans have shown no uptake and mets healing. Total happiness with those results. Quite a few of the other ladies have had success for an extended period with bone mets!

In the past three weeks I've had lower back pain and shooting pain matching all the things the ladies here have said about sacrum mets pinching nerves. It improves as long as I do no exercise, no walking, yoga, weights, nada.

So...scans on June 13th, a month early, to see what is happening. No downward dog for now.

Kathryn: Despite the high cost of living, it remains popular. Dx 11/2/2015, ILC, Both breasts, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 11/5/2015 Femara (letrozole) Targeted Therapy 11/11/2015 Ibrance (palbociclib)
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Jun 2, 2016 06:42PM steelrose wrote:

More spinal mets here. I had emergency surgery in 2010 (stage iv diagnosis) for cord compression. Rads followed. I do suffer from nerve damage/pain as a result, but no new growth in that T4/T5 area. Funny thing is I've been having leg numbness all over again and feared a repeat of 2010, but it's plain old "disc disease" this time… no cancer. Guess regular stuff happens to us too!

Wishing you all the best, Fitz, as always.

Rose.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jun 2, 2016 06:45PM car2tenn wrote:

Dear Fitwins,

Right you are to be concerned about spinal mets. 23 months ago my medical oncologist was unconcerned and just wanted me to be happy with Arimidex. I flew to Shands Hospital Proton Center in Jacksonville, florida. The radiation oncologist thought I needed radiation stat. Of course it was Proton which is extremely accurate and does not "go through" to the other side. I had wonderful success. ! there is no malignancy in that area-T-7. The physician and his nurse both thought by now I would have been paralyzed if I had not taken that action. I wanted to know why the MD could not radiate all of the mets. Foolish me there are limits/ But now chemo of Taxol and traztumab has put me in remission..I am of course delighted. Bottom line: ask for another opinion. Carolyn from Nashville

carolyn Dx 12/5/2013, IDC, Right, 1cm, Stage IV, metastasized to bone/liver, Grade 2, mets, ER+, HER2- Dx 12/15/2013, IDC, Left, 1cm, Stage IV, Grade 2, mets, ER+/PR-, HER2+ Hormonal Therapy 12/26/2013 Arimidex (anastrozole) Radiation Therapy 3/2/2014 Bone Hormonal Therapy 3/4/2015 Femara (letrozole) Chemotherapy 9/11/2015 Other Chemotherapy 1/8/2016 Taxol (paclitaxel) Targeted Therapy Ibrance (palbociclib)
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Jun 2, 2016 07:28PM GoldenGirls wrote:

My mother has mets in just about every vertebrae. When first diagnosed with mets they radiated her T5 because they were worried about it but she wasn't having pain there. Since then she has had radiation to her L1 and S1. She has not experienced any of the side effects that she was told she might with radiation and hasn't had any pain in those areas since.

Mom was originally dx in 10/2001. Mets to bones and 2 supraclavicular nodes in 01/2013. She passed away from complications from bone metastases Dec 2016.
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Jun 3, 2016 12:34AM JFL wrote:

I am another with spinal mets - numerous throughout my spine. I was in extreme pain and had severe, uncontrollable hypercalcemia when I was dx'd and had a hard time doing many simple movements I previously took for granted (walking up one mini step, getting up and down from sitting, getting out of bed or moving in bed, coughing/sneezing (which felt like my bottom vertebrae was going to snap), washing face/leaning over sink/getting face and hair ready in the morning). My doc has never suggested or recommended radiation. My bones did quite a bit of healing (my pain is minimal now) and I am currently stable although continue to have a large bone mets tumor load. XGeva has helped tremendously with the pain decrease.

I think the question of radiation is truly a case-by-case analysis and really depends on the risk of fracture determined from scans, pain level not responding to other treatments and the shape your bones were in (density) prior to current mets issue. Someone with pre-osteoperosis or weak bones to begin with may have a shorter leash before fracture or something serious occurs.

One good (and bad) thing about bone mets, in my experience, is that my body really tells me what I can and can't do. If I hold my baby/toddler for too many hours or try to do extensive work leaning over the sink preparing dinner/washing dishes, my usually pain free back will flare up for the day. Although I was clueless I had mets before dx (I was pregnant with first child and thought I was having an extremely tough pregnancy), I recall saying to myself on a daily basis "this is NOT RIGHT" when I would cough or do something else minor and be in dire pain. I knew something was wrong. Listening to one's body with bone mets can usually (although not always) clue us in when there is a significant concern.


Chart your own course. Dx at 30. Dx with mets at 38 while pregnant. Extensive liver and bone involvement. Currently on Doxil and XGeva. Recently had Y90 liver radioembolization. ER+/PR+, HER2 equivocal (IHC)/negative (FISH) as of 8/2017 liver biopsy. Dx 9/2006, IDC, Stage IIB, Grade 3, ER+/PR+, HER2- (FISH) Surgery 9/22/2006 Mastectomy: Left, Right Chemotherapy 11/6/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2007 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/2014, IDC, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2- Surgery 12/26/2014 Prophylactic ovary removal Hormonal Therapy 12/26/2014 Aromasin (exemestane), Faslodex (fulvestrant) Targeted Therapy 6/18/2015 Ibrance (palbociclib) Chemotherapy 3/10/2016 Xeloda (capecitabine) Hormonal Therapy 5/14/2017 Aromasin (exemestane) Targeted Therapy 5/14/2017 Afinitor (everolimus) Chemotherapy 8/18/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 3/23/2018 Doxil (doxorubicin) Radiation Therapy 4/9/2018 Liver
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Jun 4, 2016 01:12AM Holeinone wrote:

Hello Fitzwins & all.

I have learned a lot from your posts. Dx 3 weeks ago with mets to T10 & T6. T10 has a compression fracture. I had a bone scan today. ( Cat & PET scan also in the last few weeks ). The CAT scan was to check my liver mets.

I am anxious to find out the results of today test. Also what is next. I have 2 more Taxotere infusions. Also going to get Zometa with the chemo.

Thanks Fitz for starting this thread. I get more info here than I do from my MO

Spinal mets Surgery 7/22/2013 Lumpectomy: Left Chemotherapy 8/22/2013 AC + T (Taxol) Radiation Therapy 12/23/2013 Breast, Lymph nodes Dx 3/3/2016, ILC, Left, 1cm, Stage IV, metastasized to liver, Grade 2, 6/7 nodes, ER+/PR+, HER2-
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Jun 4, 2016 07:02AM - edited Jun 4, 2016 07:03AM by RosesToeses

You can add me to the list of people with unradiated spinal mets.  I have several spots on my spine as well as multiple other places (skull, ribs, femurs, pelvis, liver), but they don't cause me any pain.  Most of them have been stable on the various drugs I've been on although it was a new spinal met that signaled the end of my run on Faslodex.   None of them give me any trouble (it's been a little over 2 years) and the only radiation I've had at stage iv was to my hip (worked wonders in my case). 

All this to say, I agree that it's very case by case, but I think your onc is in line with most others on this one.

(age 42 at dx, lived to see 47 and counting!) my blog: mepluscancer.blogspot.com, Xgeva 2/27/14, Lupron 4/10/14 Dx 4/2012, IDC, 3cm, Stage IIIA, Grade 3, 7/9 nodes, ER+/PR+, HER2- Surgery 6/15/2012 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 7/17/2012 AC + T (Taxol) Radiation Therapy 11/26/2012 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/27/2014, IDC, Stage IV, metastasized to bone, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 3/23/2014 External: Bone Hormonal Therapy 3/25/2014 Faslodex (fulvestrant) Dx 4/1/2015, IDC, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR+, HER2- Hormonal Therapy 4/1/2015 Femara (letrozole) Targeted Therapy 4/27/2015 Ibrance (palbociclib) Targeted Therapy 10/16/2015 Afinitor (everolimus) Hormonal Therapy 10/26/2015 Aromasin (exemestane) Chemotherapy 12/4/2015 Xeloda (capecitabine) Dx 8/3/2017, IDC, Stage IV, metastasized to bone/liver/lungs Chemotherapy 8/6/2017 Gemzar (gemcitabine), Taxol (paclitaxel) Chemotherapy 11/12/2017 Halaven (eribulin) Dx 11/13/2017, IDC, Stage IV, metastasized to bone/liver/lungs/other, ER+/PR+, HER2-
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Jun 4, 2016 02:20PM ibcmets wrote:

Fitz,

I have spinal bone mets from the start in 6/09. they only radiate them if Im in a lot of pain. The Xgeva helps a lot. My Pet scans will show if they are getting too close to my spinal cord;then they will radiate them. It worked for me

Terri

6/2009 stage IV diagnosis w bone mets ,Xgeva , 2015 brain mets, liver metastasis
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Jun 4, 2016 07:44PM annewithane wrote:

I was diagnosed Stage IV in the summer of 2011 and have been in chemo since that time(my cancer did not form a lump in the breast or show on a mammogram, but instead when beginning to grow "took off" and went to the uterus, ovaries, and all the bones of the torso). A hysterectomy took care of the cancer in the uterus - where it was found first - and the ovaries. The spine, ribs etc. were found in 2011 to be loaded with cancer and, thus, the chemo's only purpose is to keep the cancer, for as long as possible, from going to an organ. I've done very well these almost 5 straight years...I'll probably die from chemo side-effects rather than cancer, actually. I think you either have to trust the treatment of your oncologist or get another opinion and go from there. The very best of luck.

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Jun 4, 2016 07:52PM annewithane wrote:

I've had stage IV for about 5 years now and have been on chemo all that time - just started on Ibrance and Letrozone about 6 weeks ago(my 6th kind of chemo, I think)...have you had any swelling of tops of feet and ankles? I have and also had the same with Afinitor that I just changed from 2 months ago....never had that before. Thanks.

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Jun 4, 2016 08:00PM Holeinone wrote:

Anne, my ankles have been swollen off & on since I have been getting Taxotere.

I have had 4 out of 6 infusions. My thumb nails hurt & look like they have bled. Next infusion I plan on icing my nails. Has anyone tried that?

Spinal mets Surgery 7/22/2013 Lumpectomy: Left Chemotherapy 8/22/2013 AC + T (Taxol) Radiation Therapy 12/23/2013 Breast, Lymph nodes Dx 3/3/2016, ILC, Left, 1cm, Stage IV, metastasized to liver, Grade 2, 6/7 nodes, ER+/PR+, HER2-
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Jun 5, 2016 10:51PM Bebecita wrote:

Hi Fitztwins,

I have mets to my L4. I asked that same question to my MO as I had the exact same concerns.

She sent me to a RO to get her opinion. The RO (different doctor that the one that did my radiation the first time) said that if there are no symptoms of cord compression, it is advisable to wait. As some blogs say, having radiation too soon may limit what can be done in the future when radiation may be necessary.

I do not worry too much about it now. If it happens, we will know in advance and something can be done in time, hopefully.

My doctor said that Xgeva should help avoid cord compression. My latest PET scan shows lower metabolic activity there and that also gives me peace of mind.

I know we want to be proactive rather than reactive... Talk to your doctors about your concerns, we have to be our own advocates to get the anwers we need.


Dx 5/9/2012, IDC/IDC: Tubular, Left, 4cm, Stage IIB, Grade 2, 3/11 nodes, ER+/PR+, HER2- Chemotherapy 6/14/2012 AC + T (Taxol) Surgery 11/26/2012 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 1/14/2013 Whole-breast: Breast, Lymph nodes Dx 8/1/2015, IDC/IDC: Tubular, Left, Stage IV, metastasized to bone Surgery 9/11/2015 Prophylactic ovary removal Hormonal Therapy 9/20/2015 Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 7, 2016 11:44AM Fitztwins wrote:

Thank you for all of your responses.

I have pain in one leg, but recently am recovering from a minor break in the foot. Is that pain residual? or spine related. we don't know.

Now I wake up with a pain between the shoulder blades, like I slept on a tennis ball, but once again...don't know..

I have been EXTREMELY lucky that for most of my 8 years, hip pain(replacement) has been my only issue due to bone mets.

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/19/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 2/1/2005 AC + T (Taxol) Radiation Therapy 5/1/2005 Breast, Lymph nodes Targeted Therapy 6/1/2005 Herceptin (trastuzumab) Hormonal Therapy 1/1/2006 Femara (letrozole) Hormonal Therapy 6/2/2008 Aromasin (exemestane) Targeted Therapy 7/1/2008 Herceptin (trastuzumab) Hormonal Therapy 6/15/2013 Arimidex (anastrozole) Targeted Therapy 9/5/2015 Perjeta (pertuzumab)
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Jun 7, 2016 04:15PM rosetide wrote:

I have lung and spine. My onc said with the spot on my spine if it isn't bothering you we aren't fooling with it! He asks me every visit if I have pain, I say no, he says all good, next treatment! If it makes you feel any better my doc has the same approach! I only have one spot but boy knowing it is there can play tricks on you, every single small pain I have I am like oh no!!! it is going to start hurting the cancer oh no! lol! I freak myself out for no reason. So if you have that too, it is normal. lol! Sending positive happiness your way!!!!

Dx 5/20/2008, Left, Stage IB, 0/3 nodes, ER+/PR-, HER2- Dx 3/2016, Right, Stage IV, metastasized to lungs, ER+/PR+, HER2+ Chemotherapy Taxotere (docetaxel) Chemotherapy Chemotherapy FAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Left; Reconstruction (left): Nipple reconstruction Targeted Therapy Perjeta (pertuzumab)
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Jun 7, 2016 07:27PM Lillymillie wrote:

hi ladies, lots of info on this thread. I too have a spine met. My public bone and femur radiated at the start of May. While waiting for zoladex to make me menopausal (got my period so failed) a small spot showed up on sternum and spine (right when my bra strap closes...not sure what T that is.) Onc saw them on an mri and said they were too small to show up on a bone scan. Can feel the spine met tingling away especially today in work which freaked me out. If it's so small how come I can feel it?? Hoping my 2nd zoladex will kick in to allow my arimidex to work. Getting scanned at end of the month. Very unsettling feeling knowing I'm still not menopausal. ..damn I would love a lots of hot flashes!!! Good to read everyones input.

Dx 2/2012, IDC, 6cm+, Stage IIIA, Grade 2, 4/15 nodes, ER+/PR-, HER2- Dx 3/7/2016, IDC, Stage IV, metastasized to bone, ER+/PR+ Chemotherapy 7/31/2016 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 1/15/2017 Arimidex (anastrozole), Aromasin (exemestane), Zoladex (goserelin) Targeted Therapy 4/28/2017 Ibrance (palbociclib)
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Jun 7, 2016 11:54PM AnimalCrackers wrote:

Yep, mets to the spine here as well (not to mention hips, pelvis, ribs and sternum) . I was diagnosed Stage IV de novo just about 2 years ago. No radiation. The mets that are scattered in the thoracic and lumbar regions are reported to be very small and haven't bothered me, although I have been experiencing some back pain recently. Hard to tell if it is pain from the mets or just my regular back pain. My CT scans always show degenerative disease (not sure if disease is the right word). At any rate I am getting an MRI next week just to take a look see. I don't want to take any chances. I was very concerned about paralysis when I first found out I had mets in my spine. I had a baseline MRI done when I was first diagnosed so they'll have something to compare it to. You are so right, treatment for metastatic bc is very reactive and it is very frustrating.

Cathy, diagnosed Stage IV de novo (with bone mets) - June 2014 (age 52). Progression to Liver diagnosed in April 2017. Bisphosphonate infusions (Zometa) every 3 months. Clinical Trial 12/19/2017 - AKT1 Inhibitor (MSC2363318A) with Tamoxifen. Dx 6/23/2014, IDC, Left, 4cm, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 6/23/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/4/2016 Femara (letrozole) Targeted Therapy 1/4/2016 Ibrance (palbociclib) Dx 4/2017, IDC, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 5/17/2017 Targeted Therapy 5/17/2017 Kisqali Targeted Therapy 12/18/2017 Hormonal Therapy 12/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy
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Jun 8, 2016 06:28AM GoldenGirls wrote:

Have any of you ladies with severe back pain from mets on the spine been given steroids for the pain? Wondering if they work and how quickly.

Mom was originally dx in 10/2001. Mets to bones and 2 supraclavicular nodes in 01/2013. She passed away from complications from bone metastases Dec 2016.
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Jun 8, 2016 09:22AM melp27 wrote:

I have spinal mets also. Had a week of radiation and got through it pretty well. Havent had major back pain since :)

Dx 7/25/2011, ILC, Left, 6cm+, Grade 3, 20/24 nodes, ER+/PR+, HER2- Surgery 8/14/2011 Lymph node removal: Left, Sentinel; Mastectomy: Left Radiation Therapy 2/14/2012 Breast Dx 10/2/2014, DCIS, Right, 2cm, Stage 0, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 10/19/2014 Mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 6/28/2015 Reconstruction (left): Latissimus dorsi flap, Tissue expander placement Dx 9/2015, ILC, Stage IV, metastasized to lungs, ER+, HER2- Hormonal Therapy Femara (letrozole), Zoladex (goserelin)

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