My centre just got MyChart so for the first time I looked at results of CT. For 3 years Onc has been saying "everything stable" and it is. I was always offered a copy of CT by clinic nurse but declined being happy to just hear "stable".
Liver mets no longer showing on CT at all - so that's great
Bone mets are stable
However what I am freaking out about is the bone mets are more extensive than I realized. I never pushed for specifics from MD because I felt good and knew that specifics would frighten me. Now I see there is a T10 compression fracture as well as 2 other sites. I feel depressed now seeing this. I have no pain and on Zometa.
Does anyone else have multiple bone mets and can this remain stable for long periods?
Thanks
Written by
Onedayatatime60
To view profiles and participate in discussions please or .
First of all congratulations on your continued stable results. That's the best news for us to receive. On your other point I would definitely not consider your bone mets to be extensive by any means. You only have several spots which I personally would consider minimal. I was diagnosed in 2018 with 'extensive' bone metastases. For me that meant I had bone mets in my neck, sternum , clavicles, shoulders, both arms down to my elbows, both hips and long bones of thighs, pelvis and sacrum plus my entire spine. My bone mets through out the 5 1/2 years alternate between being lytic(active) and sclerotic but they are always present and yes stable. I remain hopeful that it will continue that way. In your case you have every reason to believe that you will remain stable for many years to come. So enjoy your great news and try not to think of the what- if's. It will cause you unnecessary stress that isn't warranted at this time.Take care.
Thank you so much, you have no idea how much your sharing your experience helps.
The mets from beginning say sclerotic and unchanged. I really have only a little intermittant pain and have been on Zometa for the 3 years.
Can I ask if you have been on Zometa the whole time? Also my Calcium is normal so not on Calcium - I am on Vit D b/c Vit D level was low and have read varying things about Vit D and Ca
Thanks again. I am really feeling better since reading your reply. I wish for you continued stabilty as well
I am glad my sharing my experience has helped. Yes I have been receiving Zometa infusions every 3 months since I was diagnosed. When diagnosed I had hypercalcemia which is caused by an imbalance of bone formation and bone reabsorption as the cancer dumps excess calcium into the bloodstream so the Zometa stabilizes that. For this reason I do not need a calcium supplement. I take vitamin d 2000mg daily as recommended by my oncology pharmacist. I live in a part of Canada that can have long cold winters so our healthcare system doesn't check vitamin d levels on the assumption that most of us are deficient. Let's both just embrace each day going forward and you are blessed to not have any pain from your bone metastases. That is a true blessing my friend. I am not so lucky in that way but with taking pain killers I am pain free and able to cycle for 20 kilometers every day. Take care.
I too am in Canada - understand those long cold winters!!! Cycling 20 K is amazing. We are off to the Carribean in Dec., our 4th trip since travel allowed post COVID. Something to look forward to. Take care
I am really impressed by your cycling 20 km per day! I've never regularly done a lot of riding but always been very active in other ways (teaching Pilates and general fitness). I'm intrigued by the fact that some (regular?) pain killers allow you to do that much on your bike. I broke my 5th metatarsel last Xmas (we were descending from having climbed a very high mountain) and subsequently spent 8 weeks in an (ill-fitting) boot that really limited what I could do. And it still wasn't healed so I've had to be very careful for months on end and I've taken such a physical back slide as a result! My cancer progressed too, and I'm on now my 2nd line of treatment so far this year, and whenever I decide to challenge myself even a little (a 3 mile flattish ride- pelvic pain, chest pain after pulling my big stubborn dog too much on one of our walks, groin pain after lunging to catch my dog, etc), I keep ending up having a "pain event" that lasts a few days and really restricts me even more. It's incredibly frustrating. Do you have very extensive pelvic mets? I wonder if I took pain killers preemptively if I might be better off and be able to do more exercise?
Thank you for your kind words. Although I will clarify that I use a pedal assist e-bike(no throttle) and have since 2019. However I still do most of my ride without any assistance except for help as I live in a mountainous area with many 10-18% inclines. As I have mentioned before on the forum I had extensive bone mets from the get go and suffered constant pain. For the first few years into my diagnosis I refused to take strong pain killers because I felt in my mind that if I took them I would be giving into the cancer. Of course that makes no sense at all...but it was my mindset. So I took only Tylenol which of course did nothing for such intense pain. I couldn't take NSAID's because I am on a blood thinner for a cancer caused pulmonary embolism. So I suffered each and every day but continued onward and refused to give up.
Fast forward to last December when I suffered a pathological fracture of my hip and opposite shoulder by just pushing myself up from a chair. While waiting for surgery my oncologist decided it would be a good time to bring in the acute pain service and the palliative care team at the hospital to discuss 'cancer pain'. They were absolutely wonderful and finally got through my thick skull that living with pain is giving into the cancer as opposed to taking drugs that would increase my quality of life. So they worked with me...fresh post-op which surprisingly wasn't that painful to me as I was used to way more pain I guess. Anyway I am now settled into a daily routine of LA painkillers which I take twice a day and it is wonderful. Along with that it was recommended that I take Tylenol three times a day. My pain is under total control and my mind is still sharp as a tack. Also in answer to your question...yes I have very extensive pelvic mets...hence why bike riding is good for me. I can't walk any distance at all anymore and for very short distances I use a quad cane when I do. That's my story. I hope I answered your questions. Take care.
😯😱😱 (That's my reaction to your double fracture! I cannot even imagine how that must have felt and it is one of my fears - a fracture without "real" cause). BUT, what an incredible story! I so, so appreciate you sharing with that with me. It's truly inspiring and just what I need right now ❤️ Actually I already took some action reading about your 20km per day post, and just bought myself a spin bike from a local! I used to hate spin classes lol but the back of my pelvis has become tender and I can't do half of my pilates right now because of it. So I'm hoping the bike will be ok so I can get my legs moving much more than now. I do walk up to 2.5 miles per day, but I'm slower, and it's simply not enough exercise for me. I had never considered an e-bike so it's very interesting how you have trouble walking but can do all that riding. Good to add to list of possibilities going forward!
Well I am super glad the pain team convinced you to try it! I am not good at all with constant pain, even if I have a pretty high tolerance for it. I'd love to know more, such as, what are "LA painkillers"? I do sometimes take Advil / Tylenol if I have to but I have liver mets too so I'm not keen on drugs for that reason. (Apologies for my late response, I was quite sick with some virus this past week)
Thank you for your kind words. Good for you for purchasing a spin bike. Of course always check with your oncology team that it is safe to use but I expect you will do well on it. Do you have access to an oncology physiotherapist? They are wonderful at knowing what is safe and not safe based on the restrictions on bone mets in general and if they are connected to your oncology team(like mine was) they have full knowledge of the extent of your particular disease.
Sorry I should have clarified my response better around the painkillers. LA refers to long acting or some people refer to it as sustained release too. Basically the term is used for opioids in where you take a prescribed dosage twice per day...12 hours apart to give you pain coverage for the entire day.
Hope you have completely recovered from the virus now and back to enjoying your life. Take care.
Hi Praising. I'm sorry that your message I somehow missed before this. I'm not sure I understand your question but all I can say is that most treatment plans regardless of amount of mets in bones only will be the same. The one important component with extensive bone metastases is to make sure a bone strengthener such as Zometa or Xgeva is included. Of course it is always a risk versus benefit issue but when a patient has extensive bone metastases I think it is extremely important to include this component. With Zometa in particular the literature supports that it can be given right from the point of diagnosis every 3 months instead of the often prescribed monthly which overall can help eleviate the risk of developing ONJ long-term. However there is always a risk of course. If I missed the point of your question please let me know and I will try to answer appropriately. Take care.
Reading stories like yours gives me so much hope. Just had my first Zometa infusion 3 days ago. Just getting over the side effects. Thank you ladies for posting.
I am England based and was diagnosed in 2021 with MBC in ribs. My onc after six months of taking letrozole and ibrance, said there were signs of healing in hips, spine, sternum …. Slightly shocked I asked her her to repeat this and her reply was “not being funny but with your sort of cancer it’ll be in all the bones”. Well atm it isn’t in my organs and I feel pretty well so keep going 😊
Well Rosiero I think I would have told her that her bedside manner needs significant improvement and that she wasn't bloody funny at all. Sorry but this kind of thing really gets my goat. Susan
I also have many bone mets but have been stable and living a pretty normal life for 4.5 years now... Including getting married, going back to uni for a degree and starting a new job. I'm on palbociclib. OK, it does sometimes mean I more tired than I used to be or have sore spots but you can definitely have bone mets ND have. Full life.
I will say this conversation is such an encouraging read for me today as I'm in the midst of a few extra scans because of back soreness. So helpful to hear of the 5+ years alternating lytic and sclerotic and that pain is managed to have an active life! So helpful to be reminded.Have a great day
I have Mets from top to toe. I’m 8.5 years in with stable Mets reported for about 7.5 years. The last scan in June was reported as multiple healed bone Mets and the breast tumour is invisible now. I’m on Exemestane and Xgeva. And have been since 7/2016.
I don’t always get the written report but I did last time and my toes were mentioned much to my surprise. When I was diagnosed the technical description of my bone mets was that my skeleton was ‘riddled with Mets’. My biggest complaint is that my ribs hurt when I wear a bra. I avoid doing that as often as possible but even that has improved over the last six months.
I guess we all think that progression means any progression but according to a video that was posted a few weeks ago that’s not correct. Progression is thirty percent more mets between this scan and the previous one or progression into an organ. It’s confusing because some doctors do change medication at the mere inkling of progression or that’s how it appears but my March scan showed progression into an abdominal node and the radiologist wanted a follow up scan within 12 weeks. So that was done and the node lesion had halved in size in June. So I went from dreading the review to finding out when I read the report, there was nothing to worry about and no change of treatment.
Hopefully your Mets stay stable or even regress which is definitely possible although I never expected that my breast tumour would be too small to be seen.
Mine were stable for 5 years then progressed, stable again for 13 months on a second line treatment. It's such a gift that you don't have pain. I suggest proceeding in one of 2 ways go all in with looking at your scans with your doctor, search Google for info, as, endless questions here and elsewhere or go back to your old habit at trusting and resting in "stable" until something changes.
Or a third way I haven't thought of. Journey On 🌺 Mary.
I think you've answered your own question. You've just seen your 3 year scan and there are no bone mets.In 'our world' its hard to determine what is 'long term' and it can mean different things to the individual.
I had extensive bone mets in my spine when I was diagnosed Stage iv de Novo almost 5 years ago. They went with the treatment and haven't been seen since.
Of course I remain on treatment and I have had some relapses but not in my bones only brain and liver. Brain mets have been successfully treated with Gamma radiation and the rest with chemo.
To me that's long term and I have no reason to believe I won't be here in another 3
I hope that gives you some reassurance it can be managed for "many years" although it doesn't come with any guarantee
I had "extensive" bone mets when first diagnosed 19 1/2 years ago! Mets in spine, pelvis, shoulder blade and a rib. I was on Zometa until Xgeva was available and then I was on it. I got just weeks less than 5 years from Letrozole, over 9 years from Faslodex and about 4 years from Exemestane. First mets other than in bones appeared about 4-5 years ago, cancer cells in tissue blocking left ureter and a small met on, not in, right cerebellum. Had surgery for the first and stereotactic radiation for the second. Then, earlier this year, blood work showed cancer cells had changed from E + to triple negative. So now I'm on my first chemo, oral Xeloda. My onc has never been in a rush to change treatment and I like getting as much time as possible from each one! I was diagnosed the month of my 58th birthday and am 77 1/2 now. I have other health "issues," high blood pressure, low thyroid, hayfever like allergies, dry skin, spinal stenosis--all since way before cancer! Also damage in lung, rash, claw toes, fallen (foot) arches, neuropathy. My short term memory isn't good--"normal" for my age. But I still enjoy most of the things I've always enjoyed: family, friends, cats & dogs, music, reading, good food. I've learned all I can about bc and mbc--attended conferences, weekend retreats, reading. I've known other women who have gotten more time from Faslodex/fulvestrant than an initial aromatase inhibitor, like Letrozole. And alot who've lived well over 5, 10 years. Something to remember is that statistics are pulled down by those with highly aggressive cancer, those who don't/can't follow treatment plans, and those whose cancer is very advanced at the time of diagnosis. So, from what you've said here, it's very possible for you to live for a long time!
I’ve been completely covered with bone Mets since my diagnosis 8 1/2 years ago. I’m on my third line of treatment now. Also have lobular that went to my stomach lining. I’ve never had real pain and eat what I want and do pretty much what I want. Biggest issue has been fatigue. Good luck to you!
Here too. Had appt with doc last Tuesday. Remember that gingerly turning to avoid pain in my upper right rib? Well, tumors are growing on all the black spots in the scan. Right hip is just black, left is better but ribs, all the way up and down spine (vert) femur, shoulders, etc. I spoke about taking essenial oils, in the past for the pain and cannabis tintures and thc suppositories, but they do not work any longer. I am still drinking lemoan water to cleanse my liver and kidneys. Doc gave me palexia 100mgs a day. 50 every 12 hours. Plus, ibuprofen and paracetamol. Try not to take ibuprofen because I need to save my stomach lining. Anyway, still lot's of pain in right leg and left and right sides. Enhertu treatment 4th cycle was Tuesday. If this does not work, he said it will be reg chemo. Ok, no problem, I want to live, but then they need to do a biopsy to make sure what my dx is. Since 2016 hr/pr+ her2low. Anastrole, mets Dec 2019 - fasoldex +ibrance, xeloda, vinorelbin and now enhertu. Tm's general at at 52 and 15-3 is at 1800. The pain is the hard part. Thank you all above for sharing with us, as we know we are not alone in this journey. Hugs and lots of blessings.
celebrate the stable news and you! this mind-body mBC diagnosis was mets to right pleura and pleural effusion in July 2015. have been NEAD since (March) 2016. though not mBC to the bones, hope you believe stable is possible for many years. may you be at ease.
Not stable until the we get the next pet. Not sure where you got that from. Last three pet scans all showed progression in bones and lymph nodes. We are all pleased for you and anyone else that becomes stable with the news of NED. Plus, I have to continue to work. Not easy, but it keeps my mind going and gets my backside out of bed. I have been sleeping a lot since I started taking the new meds for pain last Thursday.
I have extensive bone Mets. For me it’s been harmless. I’ve had it 8 yrs in Jan. It’s been stable since I started Ibrance then. It doesn’t shrink or grow. But went into liver 2 years ago. That’s where my battle is. Don’t worry about the bone Mets. A fracture should be attended to. I have not had any fractures. 😊
Thanks for your reply. Have you been on Zometa all that time? Of course I worry about ONJ but better to be on than not.
I hope your liver met shrinks or disappears. I had 2 liver mets in 2020 that are not detectable on imaging after Taxol and continued immunotherapy- and I do celebrate that
I have not taken Zometa. I was on Ibrance for 5 yrs. Then liver Mets started. Tried immunotherapy which did not work. Then Piqray which worked one year. Then Taxol for 6 months which stopped working after oncologist gave me 25% dose reduction Then onto Elacestrant(Orsodo) It made cancer in liver worse ever! Only on it 3 month Now on Xeloda After 3 cycles I had best response since being on Ibrance Tumors and tumor markers reduced over 40% Now onto 4th cycle with dose reduction due to hand and foot
Thank you for your response. You are lucky thus far with no fractures. I worry because I have to roll in and out of bed and walk like I am 90 and do not like taking pain killers because they are like a bandaid.
Easier said than done. So, we will see what the next pet shows. Hopefully enhertu is working, as I finished my 4th cycle and would have thought that numbers would have come down over the last 4 months.
I was diagnosed with extensive bone mets in 2018. Have been on ibrance/letrozole/xgeva since then. Every time I have a scan, there is mention of sclerotic lesions, but it has not progressed in 5 1/2 years and I have a good quality of life. I am very grateful for that, and just taking it one day at a time.
i love reading all these great bone mets stories -and here's another one - my last bone scan said normal, no active cancer in my bones at this time. I'm thrilled. Still working on pleural effusion and a lump in collarbone but feel much hope. My areas were 2 lower lumbar, left hip and one left rib. I'm not on Zometa
I have 12 Mets in my spine and 2 compression fractures. And 2 spots on munfemour. Had some radiation at the beginning and I am just over the4 year mark and keep hearing stable. So we are good so far on this tough journey. 💕. Theresa
Well I’m not stable, but no bone Mets anymore. I do and am dealing with fractured vertebrae and it’s very painful. I had a kyphoplasy and that made two more fractures so I’m not doing that again. I’m on zometa and that doesn’t seem to help. Hugs!
I think you'll be fine. Compression fracture of my L5 was the very first injury I got that eventually led to my mets diagnosis 5 years ago (and I surely felt it when it happened! I sneezed and the pain made me drop to my knees in agony). The kind of crazy thing is though that with my pilates training I got myself out of pain and feeling 90% my normal strength (doing advanced work too), it was other things that happened over a few months that led to the scans. I never had any treatment at all on the compression fracture (even though at the time of dx they felt I should be getting it radiated, but that was already 5 months after it happened!So I declined). I now have mets all through nearly my entire pelvis, many vertebra, some sternal points, and now part of my skull. But it's my liver mets (evident as of last year) I'm most wary of getting progression in. So if your liver mets have shrunk that much, that is fabulous! And if you have no pain in your bone mets you're doing great! I do think it's good to be aware of where they are in your skeleton though. EG. If you are conscious of sitting with your back well supported, and avoiding standing hunched bent over towards your feet, and avoid picking something up with a round back, then that will help keep your compromised bones protected
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Good scan results today ! 🙂
First scan results since WBRT
Scan results mixed 😢
