Bone Mets Thread
Comments
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KBL,
Have you had a bone scan lately? With the amount of pain you are describing, I would not engage in any exercise without having some testing. You could do a bone scan or a skeletal survey (different test, x ray based). Or you could ask your MO about seeing an orthopedic oncologist.
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BevJen, I haven’t had a bone scan since 2016. It doesn’t show any of my cancer, just a little arthritis in my feet. Do you think I should get one even if it won’t show the cancer? It basically said my back was good. Thank you, lobular, for not showing the full picture. Ugh.
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KBL,
I've noticed that over the past few weeks, you've complained about various things. I would not ignore these things. And 2016 is a long time ago. It took some very skilled radiologists last year to identify my impending fracture on both of my femurs, but they would have broken through.
It's not my call, but I'd at least check in with my oncologist and see what he/she says. You've also described other things going on with you that I think at least call for a consult.
Good luck.
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KBL, I would agree on at least asking about the bone scan (nuclear med.) Before my MBC diagnosis, I was having some rib pain. I saw my MO, who happened to be new, since my old one retired. I went to see her and told her I wasn't an alarmist, and that I didn't run to the doctor with every little pain, but that this pain was different.
She ordered a bone scan and it showed "something" on my rib. I was supposed to follow up in six months, but I never did. That part is CLEARLY noted in my chart.
Anyway, fast forward about four years (I can't remember exactly) and in the subsequent tests following my MBC diagnosis, it showed cancer in that rib.
I hesitated to write this, because I don't want to cause you any additional worry, but I'm just saying that it's worth getting checked. I hope it's nothing or "just" arthritis.
(((hugs)))
Carol
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Thank you. I called oncologist's office. Nurse will talk with doc and let me know.
Hugs back, Sunshine.0 -
Hi kbl. I agree with the others about getting it checked but am with you on the bone scans. My cancer is not lobular but slow growing and bone scans are useless for me. My RO told me my bone scan could be hers… looks pretty normal but a CT? Oy vey… mets all over. Hope you get it checked and some answers.
Bevjen, did you look at the scan results yet?
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sadiesservant
I did look at my scan results. I had a zometa infusion last Thursday, and my bloodwork popped up in my patient portal, so I decided -- what the heck. The results were basically stable with a little bit of change regarding fluid. I have a Telehealth appointment with my MO tomorrow. Right now, my bigger issue is whether or not I can change therapies. My doc wants me to go onto enhertu, but I am not technically HER2 low -- my chart reads HER2 0, but I have two ERbb2 mutations so she's checking whether I can get the drug. I have been on neratinib for about a year, and I am having some issues with side effects that are getting worse, so we need to do something.
Thanks for checking. Yes, I am a chicken sometimes.
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Kbl, I started doing water aerobics at the Y last fall, just one day a week. If you have a YMCA near you, check what exercise classes they have. You can try a few out to see what you think. Mine offers a nice variety and I love that its covered by Silver Sneakers. I’m not a yoga person either. I go to line dance class once a week at a Senior Center and love it. Our teacher is 82 years old, not an ounce of fat on her and she can outdance the rest of us.
I don’t go to lose weight, I go to stay active and for the social aspect. Btw, you said your falls aren’t because of balance issues, but practicing a few balance exercises from time to time is never a bad idea. I started doing some earlier this year; they’re simple and don’t take long to do. Many youtube videos to choose from, here’s one I like:
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Isn't it frustrating that one test can show NOTHING and another test shows that we're full of cancer???
Sheesh!
Carol
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BevJen, I'm so glad it's stable and hope you can get a different therapy that doesn't have as many side effects.
Sadiesservant, that's me with PET scan and CT, they both show not an ounce of cancer. MRI, I'm loaded. It's ridiculous.
Sunshine, it's so frustrating that they can show completely different things.
Divine, I called the Y today. I just have to go in and make sure I'm eligible. I thought it was just good for Silver Sneakers, but she said I could use the whole gym. Really??? I believe they have a pool. I will check it out once I'm given the all clear.
I talked to my onc's nurse. They are going to send me the name of a neurosurgeon to get a consult. It's not to have surgery but to make sure whatever I do is safe. I agree I need to start moving again but safely.
Thank you all.
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Divine, I had to chuckle at your suggestion of water aerobics. I was heavy until about six months before my original BC diagnosis. Since then (more than 20 years) I have been pretty slim but still, the thoughts of a swim suit make me shudder. It’s completely ridiculous as, since my MBC diagnosis, I have more trouble keeping weight on and am about 6 pounds less than my lowest weight pre-MBC. And yet, there is still a chunky person in my brain who wouldn’t be caught dead in a bathing suit. 🙄 Some neurosis runs deep….
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KBL, I second the idea of a water exercise class if you can find one. It feels good to move in the water. And it's nice to just follow along with the instructor and maybe chat with the other ladies (sometimes we do have a couple men) if you feel like it.
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Thank you, Rosie24. I will definitely look into it.
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I totally agree with water exercise. I try to stay active because it keeps me in my job. After my MBC diagnosis everything was such a whirlwind with my big hip surgery and the rod placement I wasn't active for several months other than learning to walk and heal after the surgery. I started with the pool at my gym (once Covid closures started lifting again) because it was the safest thing I could do as I learned balance and strength in that leg again.
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Has this happened to anyone else?, I have had more pain in my hip, and the oncologist got me a referral for radiology, as soon as I got the referral the pain stopped, and by the time I went to see the radiologist I hadn't taken a pain killer for 3 weeks, he has a look at my scans and he recommended coming back when the pain is worse and as the pain comes and goes and is controlled by over the counter medication its best to leave it for now but come back whenever I want or feel I need it. The consultation seems very informal, he showed me my scans and had a bit of chat with me and that was it.
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I’ve been offered radiation on my hips, as both of them are a mess. Up to now, the pain has come and gone, but it’s been constant for a while. I am going to avoid radiation as much as I can there because I’m petrified they’ll mess up and hit something that will cause side effects that I’ll feel are worse. But I have never had radiation, so I might be more afraid of it than I need to be. If it gets even worse, I’ll have to reconsider.
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I have had hip pain and it was before my mets spread there (since Nov 21). I go in for an MRI today and have been signed up for PT by my primary. I hope that some of the pain is not cancer related and can be solved but we shall see.
Mine does remain annoying constant with worse days mixed in. I take OTC pain pills and use a heating pad or soak weekly in epsom salts.
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el_tigre, I hope the MRI went well. I do know I have mets in my hips, but they say I have bursitis too, so who knows which is causing the pain. It can get frustrating when all we want is relief.
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KBL— have you had cortisone shots for the bursitis before? I have had 2 in my right knee and both did wonders for arthritis pains. My last one was 2019 and knee is still good.
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DodgersGirl, I wouldn't have known what to do without cortisone shots in my calcific tendinitis right shoulder. They were a godsend. I think I said I had steroid shots in my hips, but I'm pretty sure it was cortisone. I'll go back and look at my report. I was supposed to go to physical therapy after but I didn't. The shots did help for a few weeks but after the cortisone in my shoulder, I was good for ten years the first time, and I had another one ten years ago, and I'm still good with that shoulder.
Sorry it takes me so long to respond. My days have gotten so busy. Lol
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KBL—- enjoy your grandson!!!
You may have mentioned shots in your hips. Fuzzy memories after all these crazy meds!
Hope you get relief. I ha rads to both my acetabulums helped. (But side effects sucked for me)
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DodgersGirl, the side effects are what scares me about radiation.
I can so relate to the memory thing. I couldn’t remember if I said I had shots. Lol
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Kbl, I didn’t have radiation to my hips, but I did have it to my sacrum (so close to the hip area). I really didn’t have many side effects. I got slightly nauseated about four hours after for about an hour or so, but it went away after the first few sessions.
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It's funny how vague the memories become. I had rads to L4 and L5 in 2020 after my mets were found. I only had 3-4 sessions, and they made this cage-like thing that I wore during the rads. I don't remember any SEs. Then I had a few rads (5-10) to my right hip and femur but without the cage thing. Again, I don't remember any SEs. The biggest thing was the reduction in pain. It was a huge help.
Carol
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Thank you for your experiences. It makes me feel that if the pain gets unbearable, I’ll have to bite the bullet and try it.
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KBL—. I didn’t have any real SE from 14 rad sessions (hips plus lower back) but rads did scatter and pass thru my intestines. That caused severe diarrhea and landed me in the hospital for a week or so trying to stop the big D. At one point I was making over 20 trips a day. TMI, I know. But it was bad. But I slowly improved and went home. I was told it would be months before that area of intestines would return to normal.
I got almost immediate relief from hip and back pain. That was great!!
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I know someone else that has landed in the hospital two times with blockage that they think came from hip radiation. I don’t think my pain is bad enough yet, but there may come a point where it may be worse than trying radiation. That’s when I will consider it. Right now I have made an appointment with a neurosurgeon to see what kind of exercises I’m able to do to help my back. I have been so fortunate in the eight years to not be past the point I can’t take the pain. I tried medical marijuana, and aside from hating the feeling, my pain felt the same. Thank you for letting me know what you went through. I’m so glad it helped.
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kbl, I want to stress that extreme side effects from radiation are rare, particularly now that they have the technology to target the radiation very specifically. I’ve had multiple radiation treatments with few issues. I did throw up once - my bad as I ate lunch and then went for rads in an area that nicked my stomach. I had loss of taste for six weeks with rads to my skull base and c-spine and a bit of a sore throat recently from rads to my c-spine/thoracic spine but it was only for about a week and very manageable. I wouldn’t hesitate to call on my RO again if I have symptoms or issues. It’s not always pain that is a problem. The most recent was a new lesion causing issues with nerves enervating the right arm. Without radiation there was risk of permanent nerve damage. I’m not 100% back to normal but much improved with only a bit of numbness in my fingers. All to say, don’t be afraid to look at rads if things start going sideways
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sadiesservant—- tell me more about the right arm rads, if you would.
2 years ago I was told by RO that I had a recent fracture in left collar bone. Pain came on suddenly. I found it hard to lift things with my left arm (I am left handed).
After supraclavical lymph node biopsy in May, pain is back in same area. Pain radiating down arm to elbow and on down to middle 2 fingers. Thinking I would hold off until I start a new treatment (maybe next week) to see if pain lessens but maybe I need to ask sooner if there could be nerve damage. Is that more permanent or can rads make that better by shrinking any mets????
Thanks
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Thank you, sadiesservant. I must admit I haven’t done any research on radiation. If I have compression on my spinal cord, radiation wouldn’t help that, right? I think I better start researching so I’m more knowledgeable about what radiation is. Im really glad you’ve all enlightened me that rads is not the horror I’m thinking it is. I will definitely talk to doc about it.
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