Bone Mets Thread

@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.

mine didn’t hurt but gave me a pleural effusion which made it hard to breathe

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.🥱😴

@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.

Shanagirl, thank you for your encouragement. I get scans in November.

Have a great night.

Shirley

Has anybody heard from Wendy in Wisconsin lately? (Weninwi)

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.

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.

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.

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.

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!

@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!

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.

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 .

@tougholdcrow - FYI, there is a non-drowsy claritin.