I have a question??

[Justme153]

Hi everyone🙋 I am wondering if I could get you all to tell me once you where diagnosed with cancer to your bones where was it spotted and how where you treated ? How long has it been since you first where told you had cancer in your bones to present time? Thanks in advance🙂

[Shafight]

3 years. Meds have only lasted 6-18 months. Just started Xeloda. Spread to my liver

[Pachira]

Had 2X mastectomy in 2008. Stage 4 Mets to the bones L2 in 2017. On Arimidex and Xgeva 5 years Had to o stop Xgeva because of Uveitis and osteonecrosis. Mets moved t/out my spine one year later and have 2 compression fractures. Currently on Faslodex and Verzenio with good results. Tumor markers dropped from 500 to 100. Developed a cough a year and a half ago so now being treated for asthma and bronchoestasis. Last scan showed cancer stable. Hope that helps. Chris

[Chamisa]

It’s been 14 months since I was officially diagnosed, but I think I had it for at least 2 years prior— I kept thinking my back was in spasm but in reality it was my ribs had pathologically fractured in a few places. When I had a bone scan after I was diagnosed with MBC ( it was suspected because my liver numbers were off) it was already everywhere— legs, arms, spine, ribs, hip/pelvis, scull…

I had been on arimidex for six years when MBC was diagnosed. (Cancer was already in my liver, lungs, and bones— frustrating to me that it was so widespread because I had regular 6-month checkups!) I was taken off the arimidex and put on Ibrance, Fulvestrant and Xgeva. That helped my lungs but my bones got much worse. Then I was switched to Xeloda which I’ve been on for 8 months. I’m still on Xgeva. The Xeloda has worked very well.

[TeddyChowChow]

Hi Justme, It seems people have really varied experiences with this!

I was diagnosed with cancer in June 2018 and bone mets in September 2018 after having some neck pain and weakness in my hand. I think if i'd had a bone scan upon my initial diagnosis, it would have been found in June. I'm treated with denusomab, goserelin, letrozole and palbociclib. 2 as shots 1x per month. 2 as tablets taken at home.

Stacy

[Kerryd22]

2015 I had a slip in a store and it was very painful. Couldn’t put weight on my right leg but I had access to a walking stick. I went to a physio therapist as the doctor thought it was muscular. After several visits it wasn’t healed so she suggested an MRI. That was at my expense but it wasn’t a huge amount of money. I had the MRI on Saturday snd on Monday I had a phone call from the physio requesting my doctor’s details as the results wouldn’t be released to her under the circumstances. I went to the gp immediately to be diagnosed with metastatic bone disease probably breast cancer. It was. So far I’ve had Letrazole, Abraxane, radiation x2 and Afinitor and Aromasin. I’m still on Exemestane 7.5 years later. Still only in my bones.

[HelenWi]

Hi Justme153,

It’s been about a year since my MBC diagnosis in Sept 2022. (Primary in 2009, took arimidex for 13 years) The mets were initially spotted via bone scan on skull and femur. I started on Ibrance, Faslodex, Xgeva. Jan 2023 scan showed progression to spine and pelvic area, plus pneumonitis. (I feel like the only person whom Ibrance didn’t work for) Switched to Piqray…initial mets are gone but spine, etc are still there and stable. We also zapped three newer spine mets with cyber knife.

Best,

Helen

[Mermaiden]

hello justme, I was diagnosed 5 1/2 years ago with breast cancer metastasis to the sternum. I have successfully been on Ibrance and letrozole since then, and continue to have clean PET scans 🙏🏻. And here’s hoping that continues a good long time. 🙏🏻 I wish you all the best.

[Figletf in reply to Mermaiden]

Yay!!

[Hidden]

Hi. I was diagnosed in August 2022 De Novo MBC with mets to lungs, liver and extensive mets to spine, ribs, sternum, this was following a hospital admittance for shortness of breath where I had a chest x-ray, MRI and CT scans. I had one shot of radiotherapy on my spine in September 22, and have been on Ibrance and Letrozole since diagnosis. I'm supposed to have monthly Xgeva injections but so far in the last 12 months I've had 3. This is due to the NHS (I'm in the UK) cancelling appointments.

[love2golfwell]

Almost 3 years ago I was diagnosed with MBC after being cancer free for about 7 years. The first places it appeared were in my left ischium and sacrum. I had SBRT (a targeted radiation) to each area, 5 sessions on each met. Before being diagnosed my oncologist noticed that I had a slight increase to one of my tumor markers and was suspicious that something was going on even though I was not in any pain. She said it was caught very early. I have been on Ibrance and Letrozole since then and am currently stable.

[Figletf in reply to love2golfwell]

😊 YAY

[JustmeMary]

I was diagnosed with mets to my sternum and T8 3 years ago. I had radiation and been on Ibrance and Letrozole since.

[Burtie1]

I had BC that spread to my bones. It went to my spine first. That was 10 yrs ago .I was tested with various chemo drugs. Usually pills and shots. I still have bone cancer in many places now.

[PJBinMI]

I was diagnosed with MBC from the get go, bone mets only, in March 2004, 19 1/2 years ago! Bone mets were "extensive", in spine, pelvis, shoulder blade and a rib. I have lobular bc, which is often not diagnosed until it's metastatic. It was initially E+, P+ and her2neu -. It quit being p+ quite awhile ago and became Triple Negative earlier this year. I got nearly 5 years from initial Letrozole and Zometa, then over 9 years on Fulvestrant. Zometa was switched to Xgeva sometime during that time. Then nearly 5 years on Exemestane and Xgeva. Xgeva had to be stopped as I developed osteonecrosis of the jaw, which was caught very early and is well controlled. Since switch to TN, I've been on Xeloda, 2000 mg twice a day, one week on, one week off. I've not had bone fractures related to the bone mets. I do have neuropathy, probably from pre-existing spinal stenosis. I've done everything I can to learn about MBC and BC, attended conferences and met alot of other women with MBC. It's fairly common to get more time from Fulvestrant than from an initial aromatase inhibitor. Don't know if you know this, but we rarely die from bone mets only. I think you have alot to be hopeful about!

[Hopeful4Cure in reply to PJBinMI]

Thanks for letting us know the 2nd to the last sentence. It indeed gives me a lot of hope.

[POT2018ery]

I was diagnosed with mbc in my bones in 2018 after 10 yrs from initial diagnosis of stage 1 bc. The cancer was and still is in my spine and ribs. I’ve been stable since 2019. I’ve been on faslodex 2 shots once a month, xgeva shot once a month and ibrance 125 on a 28 day cycle. So far so good

[Figletf in reply to POT2018ery]

😊 Yay!!

[AvidBooklover]

Original breast cancer 2012, one bone met on hip 2019. Ibrance/faslodex/xgeva for 4.5 years. New scan this week...fingers crossed that nothing has changed.

[Justme153 in reply to AvidBooklover]

So AvidBooklover in 2012 what treatment and medication did you do? Until they found the met on hip bone.

[AvidBooklover in reply to Justme153]

I was on Letrozole til 2019. I keep telling them that I assumed cancer would return to breast...was never educated about bone, lung, liver or brain. I had hip pain but never associated it with cancer.

[Justme153 in reply to AvidBooklover]

Sounds exactly like me . Jan 2019 started letrazole. Aug 2023 left hip was sore. They did a bone scan said they saw something. Did a CT scan they said they didnt see anything. So they did a MRI . MRI says they see something.So now I had a Gaurdant 360 liquid biopsie. They plan to do a regular biopsie and a pet scan. Then they will tell me what meds they will change me to. The real bummer is that my hip doesnt even hurt any more I feel great and im not sure i want to take on possible side effects from a new medacine . plus from what everyone seems to be saying that they go for shots once a month or twice a month and that to me just adds to the list of scheduled appts. That seem to have taken over my life. Im also a little concerned about the regular biopsie that it will erratate the hip area again and that then the pain wont go away.

[Light74]

Diagnosed with lobular De Novo MBC 2016. It was in my spine, ribs, hip, pelvis. Three months later after being on Ibrance and letrozole, the PET -CT indicated that the cancer was dormant and it has been since then. I take letrozole and Ibrance (75 mg) tablets in 21 days, 7 days off. I cannot tolerate the full dose of ibrance, so in the 21 day period, I take ibrance 3 days on and one day off for a total of 16 tablets.

[Fiercelypink]

Yes, agree that experiences vary greatly! Mine is on my rib just below the breast that had cancer, and we believe it is a "local recurrence" instead of a true metastasis. An MRI showed the spot in 2020, and a biopsy confirmed it was cancer in 2021. I took Ibrance and 2 hormone blockers for a year, and then had cyber knife radiation. Unfortunately, scans in April of 2023 showed a spot on my sternum near the treated rib. Now, I'm on Kisqali and 2 hormone blockers. We are going to do full chest wall radiation after about a year of Kisqali. My side effects are much more tolerable on Kisqali, and I pray it is as effective as Ibrance was!

Prayers for you too!

[Nocillo]

Bone Mets were everywhere at initial diagnosis. That was 8 1/2 years ago. Anastrozole and Fulvestrant worked for 6 1/2 years, then lobular went to my stomach lining. I have lobular and ductal. Ibrance and Tamoxifen worked for 2 years. Now am on Verzenio and Letrozole. You can have longevity.

[Sharon0122]

I’m a little over 2 years. They don’t say much about Mets anymore as it was in my spine. I have osteoporosis from it and am in zometa for it. They now have found leisions on my last scan on both of my kidneys. The right one has been there since January aabd has doubled in size fro 1.2 mm to 2.1 mm and the left one has three little ones. I got to the dr tomorrow. Hugs

[Figletf in reply to Sharon0122]

🙏🙏🙏

[Godbeforme]

I don't know if this will help but I found out it was in the bone when I slipped in my kitchen in 2018 and landed on my behind on an old wood floor and my femur broke above my knee. I had a lumpectomy in 2013 for breast cancer; afterwards I had radiation, I refused chemo. Bone scans never showed it. After my femur breaking, they found the BC in the break and put in a titanium rod from hip to knee. since then, I never have any pain there, the bone healed over the break, I go to the gym and walk on the treadmill to build up my strength as I'm almost 70. I take calcium twice a day WITH D3. I eat alot of broccoli and avocado, but mostly I feel it is my Jesus' healing touch that keeps me pain-free as I go on. I take Ibrance for the MBC and my calcium shows good on the labs. I heard a dr. say on a video that people hardly ever die from cancer to the bone, it's when it gets into our organs and makes tumors. One other thing that matters to me is before the break, when I'd stoop down to get a book off the shelf under the tv, I did notice I was using my LEFT leg to push up with and favoring my right where the cancer was! Our bodies are so intelligently built that now I believe my body knew before I did ... crazy as it sounds, I hope this helps you in some way! God bless you and heal us all in Jesus name, amen!

[Figletf in reply to Godbeforme]

🙏🙏🙏💜 Jesus is our Healer

[Godbeforme in reply to Figletf]

amen!

[WhippetX2]

I was diagnosed 2 1/2 years ago. Had severe lower back pain. An MRI confirmed that I had multiple spots in my spine and pelvis. (My general physician said it looked like I was riddled with buckshot. Ughh, what a thing to hear.) Had a round of radiation in the spot was causing pain and have been on Ibrance and letrozole since diagnosis. However, my onc said it's time to change meds due to an uptick in activity on my last scan. Not yet sure what the new med will be.

[Figletf in reply to WhippetX2]

🙏🙏🙏

[Saltandlight]

Diagnosed with MBC with bone lesions in my pelvis in 2017. Was on Ibrance and Letrozole along with Zometa infusions until June of this year when scan showed mets to T10 vertebrae. Had radiation and am now on Fulvestrant and Zometa only as I could not tolerate Piqray. Praying this regiment works for a long time.

Prayers for you!

[Hazelgreen]

Hello Justme153,

I was first diagnosed with breast cancer in 2006 when I was 60 years old. I had a lumpectomy (X3) then. Thirteen years later (2019), swelling in my right arm led to a full work-up. Cancer (most common kind, ER+ HER2-) was throughout my spine, lungs, spleen, skin, and scalp. It moved to my liver the next year but did not affect my liver functioning.

I refused chemotherapy, and have been taking ribociclib (Kisqali) and an aromatase inhibitor (Letrozole) for the last 4.5 years. I function quite well for a 78-years-old who now lives alone (husband died in April) in a large house. Fortunately, I can read medical research so I refuse to change my medications at the whims of my oncologist who wants to run clinical trials ( I have now asked for a change in oncologists).

I am also lucky to live in Canada so all of my medical care is provided through taxes. Although various forms of cancer become more common as we age, it seems to me that this does not mean we have to die before our time is up. It seems to me that cancer in middle age is simply a sign that our cells are indeed aging (much like other signs of aging such as gray hair and wrinkles) so drastic treatments are not necessary.

I do not feel sorry for myself, but I do feel sorry for those folk much younger than I am where a cancer diagnosis should be unexpected as it likely does require more drastic treatment.

[Hopeful4Cure in reply to Hazelgreen]

Interesting read. Thank you for educating me. Now, you've got me thinking about all the crap I have been through and will need to make a huge decision. I hope your post will make more of us think twice about just going along with what the onc states.

[Mumberly]

The cancer was identified in my bones during initial testing to find out where I had metastasized.

That was in June 2021. It showed two places on my spine and one spot on a rib.

My initial treatment was 8 rounds of IV chemo (FEC) followed by letrozole and kisqali. Kisqali elevated my liver counts so once that came down, I switched to ibrance + letro.

Every three months since January 2022 I’ve had zelodronic acid infusions for my bones plus daily calcium and vitamin Dz

I haven’t had a bone scan since so I’m not sure if that’s changed during treatment.

I hope this helps.

Kim

[Discocat]

Hi

Diagnosed de novo 2years and 3mnths ago but oncologist thinks I may have had it for up to five years before as at time of finding I had mets from skull to hips and most bones in between. Had rib ache that showed nothing on xray or ultra...Mammogram at 50yrs old found the primary...follow up tests and scans in the next days showed the extent.

First prescribed Kisqali, with Letrozole, Zoladex shots monthly, Zometa IV monthly Calcium /vit D daily. Liver reaction to Kisqali and I was switched to Ibrance once enzymes were in check.

Stable now. Next scans at the end of September. I'm mostly pain free, active and pretty ok on all meds. Zometa treatment is now every three months....other meds same as start.

Hope your going well with your treatments...we all have very different reactions to medications...don't take to heart too much someone else's negative response to a prescribed medication...it could work great for you.

Best wishes

Zoe

[Aquadog]

I was diagnosed December 2016 with pain in my sternum and right shoulder. Given radiation to both locations then began Ibrance/letrozole/Xgeva in January 2017. I'm still with bones-only and no progression.

[KarenandLinda]

Hi there. This is a new diagnosis for me. I was diagnosed with MBC in August 2012 and on a routine scan inAugust 2023 was told it was in my bones. I had radiotherapy for five days and now am expecting to start a new treatment (appointment tomorrow) which will include bone injections. Hope this helps

[Justme153 in reply to KarenandLinda]

So KarenandLinda where you diagnised MBC from the get go? In 2012?? Or had you had breast cancer earlier then MBC in 2012. What was the first line of treatment you did?? And when you where diagnosed MBC where did they find it?? And on your routine scan in 2023 what bone did they find it in?

[wendle3007]

The mammogram which found the BC was in Feb 2021. The bone scan and CT scan done shortly after showed large Met in T12 and on pelvis. Subsequent MRI and bone scans show smaller mets throughout spine.

When I started FEC-T chemo for the BC, I also started on 4-weekly injections of Denosumab (Xgeva) - this was April 2021 and I have continued with the Deno. I take calcium and vit D daily to support this treatment.

I've had targeted radiotherapy on the T12 twice to arrest growth

[lovnmycat]

I was diagnosed in June of 2023. Went in for back pain and found the source. Bone Mets were in pelvic bone, spine, ribs, femur, neck and skull. The pain was terrible. Started Letrozole and Ibrance in August and do zometa every 3 months. It took a while but tumor markers started going down and this last July (12 months after starting treatment). There was no evidence of active disease. Overall feel great. Some joint pain after exercising due to side effects but hey if that’s my worst complaint…

I walk about 3-4 miles a day and try to swim 20 laps 3-5 times a week. The pain got a lot better for me. Good luck with treatment!

[michelangelina]

I was diagnosed MBC 5 1/2 years ago. I had extensive bone mets which Ibrance/Letrozole took care of within 3 months, and I have been stable ever since, with no evidence of active disease. I also get Xgeva--at first every month, now every 3 months. I was premenopausal when I was diagnosed, so I did a couple of years of goserelin, until my oncologist decided I was probably past menopause. I wish you the best with your treatment! There is reason to be hopeful.

[Justme153 in reply to michelangelina]

What dosage Ibrance did you take? And do you have any side effects from it?

[michelangelina in reply to Justme153]

I started at 125 mg and then after a few years went to 100 mg because my neutrophils were too low. As far as side effects, fatigue and mouth sores were the main ones for me. I figured out a regimen that helped the mouth sores, and the fatigue is only an issue on occasion now, primarily during the end of the medication cycle. I have a good quality of life, work full time and am involved in a number of activities. I am very grateful.

[Justme153 in reply to michelangelina]

Thank you so much for this info

[cancerjustgotreal]

Seven years ago in Sept 2016, I woke up at 4am w/ sharp pain in my back right rib area. Long story short, 4 months later in January after Xrays, MRI & a 2nd biopsy, it was confirmed my previous lobular breast cancer from 2009 had metastasized in the bone. Specifically, several ribs in back on both right & left sides, my hips, pelvis & sacrum. The severe pain I felt back in Sept was actually caused by 3 ribs cracking as I slept. Sleeping on my side like I do every night was enough pressure to fracture already-weakened ribs where the cancer had spread. ER+99%, PR+1.5%, Her2- (1+), Ki67 0.3%. Successful on single-agent Fulvestrant for3 years w/out progression. Abemaciclib, lowest of 3 doses, added 5/2023, 5 months ago, when cancer spread to T7 vertebra. CT scan & full-body bone scan 9/2023 show no further progression. Hope this helps. Susan

[cancerjustgotreal]

Forgot previous treatment before Fulvestrant in 10/2020 & Abemaciclib in 5/2023: Exemestane started 1/2017 to 6/2020, Xgeva added 2/2017 to 2/2019, Ibrance started 5/2017 to 9/2020.

[Unicornuniverse]

hi diagnosed with bone mets in May 2022 - two lower lumbar, one rib and hip - been on Ibrance and either anastrasozle or a trial drug, as well as actively implementing major lifestyle and spiritual work - recently had a bone scan that showed no active cancer in those areas

[Timtam56 in reply to Unicornuniverse]

Wow. I’ve been told that I will never be cured. Meaning bone mets are terminal in my case. But yours are gone? How can they disappear? That’s amazing!!! Incredible.

[Unicornuniverse in reply to Timtam56]

the lesions are there but no active cancer , it is amazing

[Kerryd22 in reply to Timtam56]

The bone Mets aren’t necessarily terminal but the problem is that the Mets spread to soft tissues usually lungs, liver and sometimes the brain. Stage four is incurable so we will have it until we die but that time frame is wide open. We could be here for a couple of decades and several people here are at the twenty year mark and on another site one lady is nearly 22 years in.

I’m at the 8.5 year mark and I’ve been on Xgeva since 6/2015 and Exemestane since 7/2016. My bone Mets have mostly healed and the breast tumour is not seen on the scan anymore. I never thought that would happen, or even that it could happen, before I joined an online community.

Lots of people are living for years now and in fact in 2018 when a palliative care nurse visited us over my mother’s end of life care, she assured me that she wouldn’t see me for another ten or even fifteen years. I wanted to believe that and I told my oncologist what she said. The oncologist broke a cardinal rule, as the clinic refuses to guess how long we can live, and said I could certainly live ten years. I’m not far off that mark now and I’m hoping to match those who are touching on and passing the twenty year mark. Why can’t I? Others have and so can you and I.

All the best

Kerry

[Timtam56 in reply to Kerryd22]

Thanks KerryD22. I was just concerned with unicornuniverse’s post saying her scans showed no active cancer in those areas. I thought she meant that they were not there anymore. I was surprised. As I know that our metastasised bone cancer will never NOT be there anymore. I got confused with her excitement about that I think. And thought she meant they were gone.

[Kerryd22 in reply to Timtam56]

I understand what you mean because I’ve never been told I’m NED but it’s commonly used by our American friends. And while my breast tumour is noted as invisible now that just means it’s under 5mm as the CT scan doesn’t pick up tumours under that size. It’s like the word remission. To me that’s only applicable to early stage cancers but it does get used for late stage cancers sometimes too.

You’ve now crossed the mythical five year mark so according to statistics, which I think are to be found in Bestbird’s book, you now have a better than even chance of making it to ten years. Unfortunately statistics are silent on what happens after ten years but PJBinMI is at twenty years or thereabouts so we may as well aim high as low!

[Timtam56 in reply to Kerryd22]

OH YES. Thanks for reminding me of that. But just between you and me, an all of the people here on our site…. I am not at all scared of dying nor am I interested in desperately holding on. I think I’m older than a lot of the people here, and I have so many other physical ailments. I don’t know how long I want to go on in this much pain.

[Kerryd22 in reply to Timtam56]

I’m 64 and I’m not afraid to die either but I don’t want to go out too soon. I agree with your preference not to hang on no matter what. Quality of life is important.

My personal observation of those who have gone before us - Belinda Emmet who was in her early thirties, Connie Johnson who was in her mid forties and Jane McGrath who was also in her forties and there have been other high profile women such as Olivia Newton John and Kelly Preston - is that no matter our age when it’s time to go we will know it. Just extending our years of survival isn’t much value if we can’t partake, in a meaningful way, in life.

An elderly friend died a year or so ago from untreated MBC. She refused to admit that her early cancer had spread until she couldn’t get out of bed because of her pain level. She died peacefully a few weeks later and her friends were grateful for the palliative care she received because she was merely surviving not living.

Whenever the time comes TimTam you will know when you’ve done enough, had enough or your body can do no more. And when that time comes it’s good to know that we can rely upon the mercy of the palliative care system and we will get relief and a painless death. In the meantime though while life is good I plan to make the most of every day while I can! 🥳🍾 🎊

All the best

Kerry

[Timtam56 in reply to Kerryd22]

Very b3autiful, wise and informative words Kerry. Thank you. I agree with all that and I’m sure the depth of your feeling in this post runs very deep.

Yes. I have recently started thinking about what will become “just trying to extend a not very good quality of life” and what is still “living life tot the fullest” and I talked to my oncologist and palliative Pain support team. I am putting things in place, as there was a moment there a few weeks ago where I thought I was going to have to change to the Capecetibine or Piqray line. But for now…. Still going strong on Ibrance and Anastrozole. But I will be watching out for what my needs are, and I will make my decisions accordingly.

For now. I am still going okay. I hope you are too.

Chris. (Timtam)

[Timtam56]

5.5 years. Mets to skull, lots of spine, lots of ribs, and one hip. Ibrance and Anastrozole.

[sancarlos]

Hi,

Ten years after being treated for breast cancer it metastasized in my sternum. I received radiation and they started me on Femara. Twenty years later it returned in my spine, hip, shoulder. I received radiation and started Ibrance. That was 5 years ago. I went off Ibrance in November 2022. So far scans are stay🤞

Hope this is helpful.