Bone Mets Thread
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@threetree @sunnidays That is how my mother felt about it. She was a scientist and had agreed to be part of the study to advance knowledge of more effective treatment protocols. She remained cancer free for 23 years thereafter when she got a small breast cancer in the remaining breast. Probably not considered a recurrence after so many years.
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Hello All!
I’ve been on this site since my original dx in 2009 but only pop on occasionally to check in.
over the years I’ve had trouble logging on and I seem to have lost my signature.
I didn’t have bone mets until 4 years after dx -or so I thought - but the lesion they found on my femur in 2013 was calcified so I likely had it from the start.
@livinglifenow I too have mets in my sternum (twice) and now in my collar bone (twice).
I’ve had radiation 3 times (breast, femur, sternum) and the 4th time (sternum) I had targeted SABR radiation. When the first met popped up in my collarbone it was very small 1.5mm and it was eradicated with cryoblation. I was told no more radiation at that time.
But a few months ago I had a “cyst” removed from my collarbone area (soft tissue) that path has come back as breast cancer. 3 drs told me it was just a cyst.
I’ve got a consult in early July with my RO to discuss further treatment but I’ve also got my PET scan mid July to see what else is brewing!Surprisingly the January PET picked up the tiny collar bone met but did not pick up the “cyst” in the same area. I felt it. ONC told me that PET scan is not good for picking up soft tissue/skin lesions.
Marie
Lost my signature so adding it here.
2009 DX E+P+ her2- lymph nodesMastectomy left, chemo, rads, tamoxifen
Recon 2010-2013 with implant (gummy then swapped to saline) and breast reduction x2 and tummy tuckRecurrences/mets: right femur 2013, sternum 2019, sternum 2022, right collar bone 2025, right collar bone 2026
Radiation 2010 left breast, 2013 right hip, 2019 sternum, 2023 sternum SABR
Cryoablation 2025 right collar bone (no more radiation)
“Cyst” removal 2026 right collarbone ended up being more breast cancer
Tamoxifen 2010-2013 (se lost partial hearing left ear) switched to Arimidex 2013. Faslodex 2020 w/Arimidex
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@mkirkwood It sounds like you’ve been through lots of radiation. I hope you will remain stable for a long time. Fortunately, my only two radiation treatments were in 2009 (left side and chest wall) and 2025 (sternum lesion). I have been NED since then. Hoping to continue for a long time.
Best to you!Hugs, Pam 💗
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@mkirkwood just wondering if you are also taking targeted therapy like Kisqali or Ibrance. I am hoping that the drugs keep my bone Mets from growing and replicating. It would be good to know about your experience. How is your pain in your femur? Did you notice leg pain initially?
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@tallnterrific - I was on Verzenio and Fulvestrant for a little more than 2.5 years and those drugs held my bone mets in check during that time. Mets started showing up in my liver though, last fall, and that changed things. I think the mets in my bones were also progressing by then too, but very, very slowly. Sadly the "stable" all came to an end and I had to move on to Xeloda/Capecitibine, and that's been doing well for me for close to 6 months now. Faslodex with a CDK4 like Ibrance, Verzenio, etc. can definitely hold bone mets steady for quite awhile. I think some people manage even time like 5 years from it, so things could be real good for you. Wishing you a really, really good and long run!
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Thank you @threetree i appreciate your note. I do have a pik3ca mutation so I may not get 5 years but looking forward to 1-2 years if possible.
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@tallnterrific - You are very welcome. I too have the PIK3 mutation and also AKT1 and ESR1 mutations. Just how they all play out, I'm not real certain. In the last note the oncologist wrote he noted these mutations, that I already knew about, but it says I have something like 36 mutations altogether. I had no idea about that and have no idea what the implications are, and I'm planning to ask him at my appointment in July. I'm not even sure what test showed all that, because I read all my test results.
When I started all of this, I did see that a meaningful number of people seemed to get about 2 years with the Fulvestrant and a CDK/4 inhibitor, so I was happy to go with it. It seems to be only a few though, who get years and years, but they do exist, so who knows? You could wind up very surprised - I hope so!
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I am starting to feel the achyness from the letrozol especially in the morning and at often in the middle of the night. I try to walk or swim everyday but that doesn’t seem to stop the pain. Any pointers? I had this when I was first on it 11 years ago but I was younger then. I have only been on the Kisqali a week and a half so I don’t think it is related to that. They put me on the letrozol at the beginning of May. Just wondering if there is any solution to this letrozol SE. Does the Faslodex work better @threetree? Oh and your mutations may have come from a liquid biopsy if you had one. I have numerous mutations showing up in that report.
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@tallnterrific So sorry to hear about the aches you are experiencing from letrozole. I was on Anastrozole for a year and didn’t have a lot of aching, but just feeling really weird and off. I switched to exemestane and felt much better for several months. However, after six months on exemestane I got serious muscle aches, muscle tightness, and atrophy. The pain was so bad I was on pain meds every day for weeks, saw a physical therapist that tried dry needling (which helped from time to time, but not much), even tried muscle relaxants that didn’t help me at all. Eventually, I convinced my doctor to let me stop exemestane for two weeks and, miraculously, all the pain and brain fog and everything went away. I then switched to tamoxifen. Even though I am post menopausal, that is better than nothing. I still have a little bit of achiness and more hot flashes on the tamoxifen, but not nearly as bad as the AIs. Also, I have been NED for a year, so I think my MO was fairly comfortable with the switch.
I have heard that Claritin can help some women with the muscle aches and joint pain. I tried that for several months and it had no positive impact for me, but that might not be the case for you. It’s worth a try. It’s just so sad that all of these medications have so many debilitating side effects. Sometimes they do get better once you’ve been on them for a while, so I hope that is the case with you.You could also see about switching to exemestane. A lot of women do quite well on that. I was an outlier!
Wishing you some relief soon!Hugs, Pam 💗
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@livinglifenow thank you got all of the suggestions. I will see what my MO thinks will work for me. I know I can’t take Tamoxifen. But some of the other options might work.
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@tallnterrific So glad you are seeing your MO soon. Hopefully there is an option that will work for you. Keep us posted.
Hugs, Pam 💗1 -
@tallnterrific I’m only on Arimidex (brand name) and Faslodex (brand name). But recently I’ve been speaking to my pharmacist (at the pharmacy that supplies my Faslodex) and the Drug Navigator (at the chemo clinic) and they are looking in to what alternatives there are for me. I’m retiring in August and losing my insurance and the out of pocket costs are very high.
I don’t really suffer much pain - although I had an achey knee for years before the femur met was discovered. After it was radiated my knee pain went away.
Im 64 and have “normal” aches and pains - I wake up with some stiffness but if I get moving it goes away or if I sit for too long I feel achey in my hips and legs. I don’t attribute any of this to my cancer or the drugs since it only started about a year ago when I got an assistant at work and sat at my desk for longer periods of time.
I’ve heard Claritin works for long bone pain but I thought that was for during chemo when taking the neupogen shots. That’s when I used it.
I hope you get some relief and answers from your doctor.Marie
Lost my signature so adding it here. 2009 DX E+P+ her2- lymph nodes
Mastectomy left, chemo, rads, tamoxifen Recon 2010-2013 with implant (gummy then swapped to saline) and breast reduction x2 and tummy tuck
Recurrences/mets: right femur 2013, sternum 2019, sternum 2022, right collar bone 2025, right collar bone 2026
Radiation 2010 left breast, 2013 right hip, 2019 sternum, 2023 sternum SABR
Cryoablation 2025 right collar bone (no more radiation)
“Cyst” removal 2026 right collarbone ended up being more breast cancer
Tamoxifen 2010-2013 (se lost partial hearing left ear) switched to Arimidex 2013. Faslodex 2020 w/Arimidex
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@mkirkwood HiI noticed your bio ,of 2009 diagnosis and years later had Mets. Sounds like me😉
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@shanagirl Your signature is very familiar to me. It’s like I wrote it!
My bone mets were discovered in 2013 so only 4 years after breast DX. Then 6 years later another met this time in the sternum.
It seems my body grows something in the fall/winter every few years and I have to deal with it after Christmas.Since 2019 I’ve been having PET scans in January and July. They’ve been pretty good at picking up stuff but not the latest skin lesion which drs all thought was a cyst. We’ll see what the next PET scan shows.
I’ve also got an appt with my RO just before my next PET but I think they’ve mixed up my timing. I just think it would be better to have the PET then have RO review it and see if any further/additional treatment is needed.
For those of you having generic fluvestrant do you suffer any side effects? Are you getting any assistance with the cost? I’m looking into switching from brand name Faslodex because of the cost.
For now I’m still working until August and keeping busy in the garden with my dogs!I hope you all get to enjoy the rest of your week!
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@tallnterrific I am a very stubborn old lady, so I just keep going with pilates and lots of walking. I have increased my walking lately—just short rounds several times a day— and have found that it helps with both joint pain and sleep. I see a manual acupuncturist once a month and she has given me some exercises to keep things loose. Pilates keeps my muscles strong and provides some relief for the joints. I know from my CT scans that I have arthritis everywhere so I'm trying to keep ahead of the game. I think I may have already said this, but the side effects have gotten a lot better now that I'm two years in. and the drugs are keeping me alive and I always think that's better than the alternative.
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@tougholdcrow Thank you for this encouragement! I try to walk and/or swim everyday but so far that has just been causing cramping in my calves and soreness. I was swimming daily prior to my diagnosis but because of 2 months of travel and the biopsy, radiation and multiple tests I was out of the pool for the better part of 3 months. With your experience I am now feeling optimistic that it will eventually yield dividends! Thank you so much.
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I am starting to think I may have a UTI. How is that handled on Kisqali? Do they let you take antibiotics or do you have to go off the drugs?
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Hi @tallnterrific I had to go on antibiotics for diverticulitis while on Kisqali. I was put on a Kisqali vacation while on the antibiotics. Started back on K when I was done (~3 weeks) and my next scans a month later did not show progression.
Hope you feel better fast! I have had UTI’s, not fun at all. They made my mom a bit wacko when she had them. Best of luck for a fast resolution!
xo juliana2 -
@eddiej thank you so much for this information! I wasn’t sure if they would want me to take a break and your response helped. I had a mother who acted a bit strange when she had UTIs in her 70s and 80s also. I hope I don’t get to that point.
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