Bone Mets Thread
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@dulcea, my bone mets don't give me pain. I have what I call "pings" of very low level pain which last for a few seconds. I thought that might get more intense when I began resistance training, but no problems. Like @chicagoan, when my bs told me I had bone mets he talked about a huge one in my pelvis and the way he was talking the whole pelvis was at the point of disintegrating. I was terrified to take a step. Luckily I moved past that point really quickly.😀 If you have concerns and the pain has been with you long enough to worry you, then scans might be best to give a definitive answer about what is causing it.
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@dulcea I had on and off pain for over 3 months, which I dismissed first to be sitting on my computer for too long, bulged desk, bad workout ect. I then started having pain in my leg, couldn’t stand straight or sleep for a month, I fainted from how painful it was. I guess I didn’t want to believe it was cancer again. I got it checked and I found 6 main Mets, but a big one around my spinal cord which was dangerous. Now 9 months into my treatment, I’m declared in remission (got scan results last week :))
From now on, if I’m suspecting anything, I will get it checked right away.
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mine didn’t hurt but gave me a pleural effusion which made it hard to breathe
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Thanks everyone for your experiences with bone mets. I do have a scan scheduled for next week but my question is more about my back pain, which I have had for many years with many issues. I also have spine mets at the same vertebra so its hard to determine what is causing the pain. I'm not sure if it's normal spinal stenosis progression/disc herniation or met progression. The radiation oncologist is not certain either but thought that it would be constant pain if it was from the mets so my back pain coming and going was not due to cancer. I did have a thigh met too last scan and I do get "pings" there once in a while but I am just hoping its the the treatment fighting the cancer:) and that's why I get those feelings there.
I figured going to real people who have real mets would give me a better answer than the RO who "thinks" what might happen. And I got those answers, so thank you. I can always count on my sisters.
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Hi ladies. I’m sorry I didn’t get right back to you. I’ve been so wiped out since my treatment injections on Tuesday. Today especially I suddenly felt so weak and breathless going up stairs, and just hurting all over in my bones. Ha, even my facial bones are hurting.. But I always feel this way the. Day or 2 after treatment, specially after I take my morning dose of Verzenio.
@dulcea in answer to your question, for me, my mets in. The spine and ribs, the pain comes and goes at. Certain times of the day. Also certain activities flare it up, like sitting too long on a barstool makes my spine hurt and feel like it. Will collapse in on itself, an also my seatbones and tailbone.,when I feel like this I just want to get horizontal and lay down to take the pressure off being upright for too long.. I also am very sensitive to the weather barometric changes.If youhave disc issues also, it. Just adds to the mets discomfort and pain and stiffness from arthritis too. Scans last week, though I was stable, they also showed uptake In my shoulders, elbow and wrists and feet and ankles. All with. “Worsening osteoarthritis. So if you have any of this you will be in pain under different circumstances throughout some days. I just refer to it all as bone pain. But one thing for sure, this spine pain makes. You feel weak and unsteady and uncomfortable standing too long.. I hope this. Helps @dulcea 🩵
@Greatly blessed I feel your pain, Shirley. If there has been severe weather on its way to your area, that can make your bones hurt more. There have Been times that I actually felt my mets were progressing because certain weather systems affected me so much. I was really miserable when that aurora occured during a solar geomagnetic flare hit the earth during the Summer. I really felt such relentless cancer pain in my bones. But it diminished after the aurora disappeared.. I look back at that week and truly feel it was the weather system. Most likely by the time your scan’s come around You may not be feeling so painful. I pray you will have a calm pain free evening tonight, Shirley.🩵
@tougholdcrow , Yes I did have one fall and landed right. On my. Butt. Ouch!!.
@malleemiss251 Enjoy that 17 year old kitty. Mine lived to be 22.. Yes I was motivated to walk, cook and move more this week…and I felt pretty good……until….. treatment injections on Tuesday.🙄
@threetree, I think this week I’m going to focus on doing some stretching to relieve the aches and stiffness. I always feel better when I stretch. I’ll let you know how it works.
@chicagoan Who does that to a newly diagnosed bone mets patient. Only an insensitive tech or some other unprofessional . I can totally understand how scared you were when they told you might be paralyzed. This disease gives us enough to fear, we don’t need comments to us like that.♥️
So good night all. Have a good sleep tonight. I’m ready to get into bed.🥱😴
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@shanagirl that was better than landing on your head! That is so interesting about the aurora.. . you are cosmic.
I'll just put in another plug for pilates. I did pilates all through chemo, even when I felt like death hung over. I had magical thinking that if I could just keep doing pilates, I'd be ok, and, at least for now, one year later, I am NEAD. It's just the best for strengthening the core, which holds everything up, and if it's a good studio, the instructors can modify any exercise to accommodate physical problems. People do it to heal from injuries and for chronic arthritis. I know many people who also swear by yoga, which can be gentler. My cancer center offers free yoga sessions. I just know that I feel much worse when I don't get up and move around, even if I think it would be so nice just to sit in my lovely recliner and listen to great books or watch a silly movie all day.
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@shanagirl I am with @tougholdcrow about moving around - it has helped me, and I think helped specially with the side effects. I started with chair exercises. My family had trotters and pacers. Wonderful animals. Bizarre as it sounds, if I smell horse manure I am taken back in memory to those horses. I hope everybody has a good day.
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@tougholdcrow OH YES that smell never bothered me. I used to love to put my cheek against my mare’s cheek and soft nose an I would just take in the smell of her. I loved her scent so much., Her Mare smell with the leather. Her name was Airmosa. She was Trakkaenor, Thouroghbred mix, a beautiful grey warm blood at 17 hands tall at th shoulder. She had such a smooth gait. It was like riding a couch. Now I’m getting sad so I’ll stop talking about her.🥹🥺💙
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Shanagirl, thank you for your encouragement. I get scans in November.
Have a great night.
Shirley
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@Greatly blessed All good wishes for positive scans.
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Has anybody heard from Wendy in Wisconsin lately? (Weninwi)
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Never mind the above. I see that Wendy is on the Enhertu thread. I forgot she switched drugs, so I never see her posts these days. Glad to see she's posting.
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Hi threetree,
Yes, I'm now on Enhertu. Finished infusion #13. Side effects for me are tolerable. Last scans were "stable". Just got a port placed - still in the healing phase. Didn't want one, but everyone encouraged it and my veins were starting to object to getting stuck every 3 weeks. How are you doing? I've bookmarked several of these discussion boards so I can somewhat keep up with contributors I've gotten to know.
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Hi Wendy - So nice to hear from you. I was getting concerned that I hadn't seen any of your posts for quite some time, but then I remembered about your drug switch, and sure enough, there you were on the Enhertu thread, that I don't regularly read. I am still on Verzenio, and you are one of the people I looked to when I was first diagnosed stage 4, because I was scanning the posts to see who seemed to be doing well on what. At that time it looked like you (and some others) were having a good run with Verzenio. That's one of the reasons I asked my onc at the time if I could do Verzenio instead of the Ibrance she was suggesting. To my surprise, she was fine with Verzenio (she's was not usually open to anything other than what she was looking at), so I've been doing that ever since. I think it's been about 18 months now that I've been doing OK with the Verzenio and fulvestrant (get Zometa too - yuck!).
It was also your experience that motivated me to initially get in touch with the Mayo Clinic, but then they were only doing in person visits after Covid; no more telehealth, and I just wasn't going to travel that far. Also, most places now all recommend the same thing, so that second opinion isn't always as valuable as it might have been in the past. I did get something similar however, in my new onc at my regular clinic. My previous dr went on maternity leave and while she was gone, I was seen by an absolutely wonderful "substitute" oncologist, so I asked my clinic if I could permanently switch to him. They initially said no, but I pushed a little harder and got the switch I wanted. I've been with him now for about a year, and am so very glad that I am seeing him now. A much better situation. I've remained stable so far, with fingers crossed of course.
I saw on the threads that you had switched to Enhertu and I've been glad to see that it is working for you. Fingers crossed that it continues for a long, long time! I'm sorry you had to get a port, but I guess sometimes it is ultimately better than getting your veins all torn up. I was so glad to get that old chemo port of mine out, but they have suggested to me that at some point, I may well need to get another too.
Well, here's to continuing "stable" for both of us (and so many more here too), and again, I am so glad to hear from you and to know that you are basically doing OK. Onward we go!
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Hello everyone! I wanted to chime in to see if someone could help me decipher language from my recent MRI and answer another question for me. Although I met with my surgeon to go over the MRI, I still am unsure what some of the language means. For context I am bone only mets since Dec 2023 (recurrence from original dx stage 2 - 13 years ago). I had a major surgery (fusion) on my cervical spine when metastatic bone disease was discovered in Jan 2024 due to severe fractures there. Mets were discovered in cervical spine, thoracic, lumbar and illiac. Recent MRI shows everything is shrinking! However under "other" it states - "Few iliac bone metastases are without substantial change." - Do we think that means the "few" that are there haven't changed much or only a "few" of the iliac mets are without substantial change meaning many have shrunk but not all? I mean honestly I know I am so blessed right now but just want to understand that part because to be honest I still have some mild pain in the iliac area. I do have a PET Dec 12th - I have never had one before - so I am guessing it will show if this iliac area is "active" and that will also answer my question? I am super unclear about these tests. My last CT scan said "stable" for the bone mets. No change. That was in September and now this MRI is saying everything is shrinking and my surgeon was very pleased. Confusing to say the least, but again grateful it's all good things. Final question for those with skull mets. A bone scan done when I was originally dx metastatic in Dec 2023 showed some skull mets but those have not been scanned at all since then. The PET will not cover my head nor do the MRI and CT scan. My onc at one point said "the mets tend to behave the same throughout the body and we want to avoid more radiation" so she doesn't seem worried about monitoring the skull, but should I be pushing to have these checked out too? My CEA and CA15-3 are both in normal range since May. CEA was never out of range at all actually. Thank you in advance. So many questions and so grateful to have this forum.
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@iacmelis11 The PET scan should tell you more about what's going on here, so I'd wait to draw any conclusions. "Without substantial change" is good! My understanding is that bone lesions can be inactive, but don't shrink. I have three that are stable on the CT scan, and not visible on the bone scan, and my onc says the cancer is inactive, so I'm going by that. The bone scan is full body, by the way. From what I can see, you seem to have good news.
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Thank you @tougholdcrow It's just so funny how different imaging tells different stories. I like the MRI story best in my case :) Fantastic that you are stable too. Congrats. Hopefully I will get more information on the whole "they act the same way in different parts of the body" so I am not worried about my skull mets and can fully enjoy what I hope will be positive PET results too in a few weeks.
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@iacmelis11 - I totally understand how you feel.
I have had mets to my skull since I was diagnoised in February 2021. Although my initial PETS did not include my skull, my mo, at the recommendation of my ro, requests that my PET scans be Vertex to Toes. She also adds a note to the orders for the radiologist who is reading the scan to be sure to comment on any skull lesions. To get a more complete reading on my skull lesions, my ro was having a brain MRI done every 6 months, however, when one of my brain MRIs showed progression earlier this year, he increased the frequency of the MRIs. I am very greatful he decided to do so since one of my lesions had started to grow to the point where it was recommended that SBRT radiation was necessary. I had 5 session done in mid July. My next PET is tomorrow to help determine if a second skull met (which had previously "disappeared") is starting to grow. He is not sure he agrees with the radioogist who read my brian MRI last month and reported that it is showing some progession too. By the way, my ro did tell me that the brain MRI is more precise than the PET.
FYI, getting my mo to agree to order the PET Vertex to Toes was not an easy job. Am thankful that it is no longer an issue.
Best of luck to you.
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Last year after 6 years on faslodex dr walks in the room and says your bone met is STILL shrinking. He's not much of a talker so I didn't question him. Previously he said it's mostly dead but doesn't go away. It leaves a scar. The surgeon just said it's all dead, very unusual. I think it all depends on the test used.
Always good to hear anyone's news that it's dormant.
Communication is difficult for everyone! So many words with the same or similar meaning.
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Congratulations, Gailmary! I am always amazed at how long you've been able to keep doing this with one drug; well, at how long you've been able to keep doing this, period!
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Thank you all. Spoke to my NP and she said they just don't think there is reason to scan that area specifically given how the rest of my mets are responding favorably to treatment. I am ok avoiding the radiation. She also verified that my MRI was fantastic and well that always feels good. I will have the full picture after my PET in December and here's to things staying quiet / stable on that scan too!
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I have bone mets in ribs, spine, pelvis, hips….and right and left sacro-iliac (SI) joints. I also have arthritis in shoulders, spine, hips, and SI joints (I'm 75). I've had only intermittent mild/mod bone pain d/t the cancer. I recently had a pain flare in one shoulder that I'm pretty sure is arthritis. And now my SI joints have started bothering me and even my buttocks on one side is tender to the touch. I looked up arthritis of the SI joints and pain in buttocks is listed as a symptom. It's the fall season here now (WI) and I wonder if weather changes could be affecting my arthritis?
Any thoughts on distinguishing pain d/t arthritis from bone pain d/t mets? Thank you.
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@weninwi I just asked the same question not that long ago on this thread just prior to my PET scan. I have had back/nerve pain for a while and can't distinguish what is cancer and what is related to disk/stenosis issues. I have both on the same vertebra. I also have arthritis in my big joints too. All my treatments failed for the last 6+ months and have felt a few more "pings" than usual in some old and new spots. The new and most painful spots turned out to be new mets. The old mets still don't hurt. Not sure this helps you but this is what I have just experienced recently. Coincidentally, my left SI joint is a new met and that ones hurts into my butt too! Not tender to the touch but I still don't like it. Naproxen sodium helps me with all the pain so I'm not thinking about mets all day long!
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@weninwi Funny you mention this. Just after stable scans, I have been feeling creakier than usual (I'm 67), mainly hips, but some shoulder too. Rainy and cool here. I do pilates, so I was wondering if I had overdone it or whether the letrozole is causing it. Aspirin seems to help if it is really bothering me. I know people advise Claritin, but it makes me too sleepy.
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Wendy - I can never tell what's what, so probably not a lot of help. I have osteoarthritis everywhere in addition to mets to spine, ribs, and sternum. Then there's the Verzenio and Faslodex that also add to the multiple joint/muscle pain scenario. I will say I hurt a lot more when I had active fractures to my ribs, spine and sternum, during the spring and summer of 2023. Once those healed, I have had no further fractures, less pain, but still quite a bit of pain. I do definitely notice the weather making a difference; especially since I've been on these drugs. Sometimes I wonder if the drugs and weather "combine" to make worse pain somehow. We have gone cold and rainy here, and I feel it everywhere. I assume it is a combination of the drugs and the weather change, but can only ever be certain of that when I get new results from the scans I get every three months. Until those come in, I am always just "assuming" from general knowledge and past experience. My scans have been stable now for a good length of time. I do take a very occasional tylenol that can take the edge of most of it. I'm wary of the aspirin type drugs due to their bleeding potential. I've also been doing PT for the last few months, and I think that that, along with my daily walks also helps lower the pain level some. I am never without whole body aches and pains though; it's just the degree that varies and I never know for certain just what causes what. Really sorry to hear that you experiencing all of this.
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Hi there, I rarely post but when I do, I'm so grateful for those who share their experience. Thank you.
I was diagnosed Stage IV in Nov. 2021 with one bone lesion in the left sacral ala. I've been on Ibrance+Letrozole (quit after 1 year due to neutropenia) and Kisqali+Letrozole (still on). My quarterly CT+bone scans have only revealed persistent (but stable?) uptake in the sacral lesion. Until this week. It appears I have a new lesion in the "left fourth costovertebral junction."
I'm curious what's next - whether they'll biopsy or radiate? But mostly I'm wondering what new drug regimen to expect. Previous biopsy of the original sacral lesion showed that I have FGFR3 Amplification and PIK3CA E545k mutation.
Does anyone else have a similar experience? And what treatments have you tried after stopping a CDK 4/6 inhibitor?
Feeling overwhelmed. :(
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Wendy, I Can only speak from my experience of my 1 bone met bit that pain was excruciating and became nearly constant. Ive been told that to co sides it a met if it's only on one side of the body and it's pretty regular for 2 weeks or more. I might not mention to Dr till then. They jump on it so fast.
I'm in s. WI and the weather has indeed begun to activate my arthritis. I'm 68. Many here don't know the whats causing their pain. . We just know pain! What works for you?. So far tylenol works for me and keeping warm. H
I hope you all find relief .
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@lgp1111 I'm too new to this experience to advise on what might be next for you, but I'm sorry you're facing this possible progression. @cure-ious might know something about possible treatments, since she's the wiz.
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@tougholdcrow - FYI, there is a non-drowsy claritin.
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I am just one month shy of my 5th year anniversary and found out today that my "sciatica" looks to be bone mets. I've been in so much pain that at least I have a reason now and some real pain meds! But I have no idea how bone mets are treated. Will I have to go through chemo again!?
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