Bone Mets Thread
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I was wondering the same thing. I don't mind them... just find them utterly useless in my case. They never tell the whole story in terms of my extensive mets.
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I dislike bone scans due to anxiety. I also feel cold when they conduct the scan - to the bone chilled. Otherwise it's just another scan.
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I have no problem with the bone scan as long as I keep my eyes closed at the beginning. The machine is RIGHT THERE at your nose. Otherwise it is boring and the last time, I had pain in my left arm due to holding in an awkward position.
But that scan is how all my bone Mets were found at the beginning so it is a good scan for me.
Heathe
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I just feel like I am trapped under that machine for soooo long. Also, it is such a pain for scheduling, especially now with all of the covid precautions -- waiting for the nuclear thing, etc.
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They give warm blankets at my place if I ask for them. So I'm all swaddled up like a burrito. I do make sure to get all wiggled and comfortable at the beginning. Some techs rush that bit, they seem to want me to just hop on and we start & I'm like nope, that's fine for a CT where it's in & out but not for this thing where I'm going to lie stll for 45 mins. So I fidget and take my time getting settled & asking for pillows or extra tape. they can tape your arms to the side arm supports & then you can really relax & let go of the arms, ,kwim? And then it's like a long Shavasana lol
scheduling them is a pain tho I agree. Without covid I'd take myself to lunch between the injection & the scan but now I just hang around in my car most times.
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I don’t mind the bone scan. After the NM injection, I get breakfast or lunch and watch a movie on my iPad until it’s time to report back, then it’s only 20 minutes and I don’t have to change into scrubs. The machine does come down very close to my face but the techs always form a barrier tip with the blanket so it doesn’t seem like it going to hit me.
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The nurse I usually get for my NM injection and scan always asks when I last emptied my bladder before she takes me into the scan room. I really appreciate that. I appreciate the blanket, too.
I have my "scan outfit" that I wear on my CT/NM scan days. Pull on pants, long-sleeved tee shirt and no bra. It makes things a lot simpler. I usually bring my knitting and my phone and Kindle to keep myself occupied during the waits.
The schedulers are really great about scheduling the NM injection, (they leave the IV line in), then the CT (they remove the line after they inject the contrast), and then the NM scan. Lots of waiting, but at least it's all on the same day.
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BevJen - like Moth, I'm curious about your thoughts on bone scans too. I had the same surgery you did on my hip with the IM nail/pin I think. On my bone scans that whole area is bright but it doesn't differentiate between cancer and the remodeling process or arthritic processes so lately they haven't been helpful. I think my MO does them to make sure there's nothing new. I'll have to ask my MO about the skeletal survey. Historically, my tumors do not show up on XRays. When I was first diagnosed I had several Xrays to that hip and we thought initially that I had a groin pull or labral tear because the XRays were "normal" so my Stage IV was missed for several months because of this until they finally did an MRI.
I'm so glad to hear your hip is healing well! I remember that was a rough go for a while when you first had it done.
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Emac and Moth,
I'm not sure why I hate the nuclear bone scans so much. One thing for sure is the time suck, because it freaks me out to have to hang around the hospital until it's time for the test. The other is the scheduling -- I used to get CTs and bone scans on the same day, which used up some of the time, but I'm now getting the two tests generally at two different places on two different days.
I had both hips worked on -- my L hip has the pin; my R hip has a complete hip replacement. Both of my femurs were messed up with both arthritis and cancer, so maybe that's why my Onco orthopedic surgeon is using X-rays. The surgeon is the one directing the tests for the hips, not my MO. He was also the one pushing for additional nuclear bone scans -- and he came up with this skeletal survey thing. So your MO may not be aware of it, but surely he/she could talk to an Onco orthopedic surgeon about it.
The healing process for me has seemed endless. After a total of 44 days in the hospital (roughly split between Hopkins cancer ward and Adventist rehab hospital) I had to have radiation treatments on each side. Then I started intensive outpatient PT. I will finish that next week, thankfully, but it's been a LONG haul. I am still working on strengthening those muscles.
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BevJen - I don't blame you. I remember you were in the hospital a long time. I work with an ortho oncologist and he had XRays ordered to differentiate a spot on my bone scan that the local radiologists were reading as a met. He believes based on the XRays that it is osteonecrosis not a met. So the ortho onc's must look at XRays different than general radiologists do. He's been very good to work with.
I agree with the time suck. My situation is different. I'm in a smaller town and live about 5 minutes from my local hospital and cancer center. I go in for the injection and go home for the "marinating" time then come back. I used to be a nuclear medicine tech years ago so I guess I never really thought about the scan part of it too much. Like Moth, I get myself comfortable and nap through it but laying on the table that long is a bit brutal on my back. I definitely prefer the CT where I'm in and out for sure.
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Has anyone taken Doxil monthly for bone Mets progression? That is what my MO is proposing. It’s not a big progression, but, second PET in a row showing newly reactivated spots.
I am ILC and have run out of oral options. I will meet with an RO to discuss zapping, but, my MO thinks there are too many for that.Thanks for any input
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wow, I haven't been here in a while. Sorry to see the new names since. I wish you all well. Sorry I can't help you Nkb.
I just have a bit of anxiety w scans. Done same day 15 minutes away so like eMac, I'm home in between.
Today I'm wondering what you all have to say re bone pain from cancer. Specifically, do you have referred pain? I've been passed around a bit like it's unusual. First it's cervical radiculapathy from arthritis in neck, next dr says it's golfers elbow, etc. Finally a sports med dr says either arthritis or cancer pain. Either way referred. Most likely cancer cause timeline matches. What's weird is that it moved down the arm about 3". Funny now that I write this I recall seeing acupuncturist a few months ago and she said pain would slowly exit the body out my hands! Maybe I should go back for mIre treatments. Any thoughts?
Gailmary
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Gailmary, I have a great deal of trouble with referred pain from my bone mets. My most troublesome mets are T3-6 and I have pain and numbness shooting into the rib cage and shoulder blade on the left side (only a little mets in rib cage, not enough to cause this much pain). My entire armpit is numb and the pain shoots across my breast and into my sternum. It hurts to sneeze and cough. No, it's not my lumpectomy side, where they took out 12 lymph nodes. This has been going on for months, but doesn't coincide with any treatment. It took over a year to get the pain diagnosed by MO. And there's nothing to be done about it. Crazy.
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Dear Gailmary,
My suggestion is that you would see an Onco ortho. They would be the best to assess what's going on, and you would get out of this guessing game scenario. Without understanding fully your entire situation, different health care providers will give you different answers. I am recalling some years ago when I went to an orthopedic doc for pain in my ankle and heel. He knew about my cancer diagnosis and my meds, but seemed perplexed as to what was going on. Eventually he diagnosed tendonitis. When I later discussed it with my oncologist, she said -- oh, yes, tendonitis is a known side effect of extended use of letrozole (which I was taking.) So he had part of the picture, as did she.
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I just realized that my MO called it peripheral neuropathy. I know that's a side effect of Taxol, which I was on in 20-21. I also just realized that the terrible pain I've been having in both heels is probably a side effect of the Taxol, too. I just went out and looked about the peripheral neuropathy, and they listed tendonitis. I somehow ignored that in all my research on Taxol. I just thought I was sitting in my recliner too much over the last year and had bedsores on my heels or something. lol
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My bone pain is felt in my upper back and then my lower back. I do not have any spots in my lower back but my ONC said the middle back spots can effect the lower (ribs and side pain as well). My situation is also muddled with my ovaries being removed at the end of Nov 2021, so I may be experiencing enhanced joint pain from that (yay).
My pain management consists of Tylenol with codeine which doesn't take the pain away but makes it tolerable ( I can take 2 pills but only choose to take one). I think if it persists radiation might be on the table.
In the past I have seen an acupuncturist that helped me a great deal, when this covid calms down I hope to see one again.
In regards to Taxol I had it back in 2015 and experienced a painful neuropathic itch. Gabapentin helped a little, lyrica helped alot and it passed. During a few of my reconstructions it popped back up again and I took Gabapentin until it passed.
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El_Tigre and those of you who have pain from Bone Mets….I’m wondering whether your pain is consistent and constant or whether the intensity varies at different times of the day? Is your pain the kind that almost takes your breath away? Is there anything that makes it worse?
I have mild, mostly continuous discomfort in the center of my back. I can usually ignore this, but lately I’ve been having intermittent stronger pain near T11 where I had my lesion. Sometimes I’ll get deep pain in my ribs that comes and goes. A deep inhale can sometimes trigger this sharper pain that dissipates after a few minutes. Since my last scans were clean, I think I’m just experiencing the side effects from radiation, chemo and Tamoxifen. My MO thinks I’m just having muscle pain since my scans didn’t show anything.
I also keep telling myself that if I don’t feel like I need a strong pain med, that this must be something I shouldn’t be worried about. My next scans are scheduled for the beginning of March. I know that will be here before I blink, but it also seems like a long time to stew about the pain.
I’m not looking for a medical diagnosis, just interested in hearing about how others are experiencing pain frombone mets.
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cyathea, my experience was this: I had some rib pain which felt sharp rather than dull. This was several years before my MBC diagnosis. I saw my MO and she ordered a nuc med bone scan. It did show something on my rib and I was supposed to follow up with her. The pain went away and I never followed up. (That is clearly marked in my medical record.)
The next pain I had was in my hip. It was sharp and quite painful. I actually thought my hip was broken. It was really painful when I first got out of bed and I'd hobble around for the the few first steps. I also noticed it when I'd be standing in line for Starbucks and when I went to take that first step or two, man did that hurt. I saw my PCP, had an x-ray of the hip, but it didn't show anything. I remember taking a trip in October and having trouble because my hip was hurting. Then in February, I found the lump in my armpit which led to my mets diagnosis.
At that point, the cancer was in my ribs (same area as I had the pain before), my spine (L4 &5), left hip and femur.
So yes, I did have pain that I'd call sharp, but it wasn't constant.
I hope your scans in March give you a little more feedback on what's going on with your spine.
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My bone met was asymptomatic but I have pretty constant muscle pain. Massage therapy and heating pads are really what keep me going. In 2020 I got this kind of heating pad as a present and it's lovely for upper back pain. I think mine is a different brand but the design is same https://amzn.to/3rygtyl
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OMG Moth, that looks like an awesome heating pad. I had one for my lower back which my mother co-opted. Bit annoying but she is 90. 😉 You may have pointed me to a replacement. Thanks!
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Shazam, moth! That’s like a heating pad on steroids! Almost like wearing a cape! I can imagine how good it feels to wear.
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Somehow I see sales of moth's heating pad having a dramatic increase in sales from this group.
As far as the question on bone met pain. Yes, mine did hurt but I have a lot of other pain that I think is the side effects from some of the drugs we take. In my case, I think Faslodex is causing my back pain from L3 through L5. It's been looked at and not cancer but degenerative changes that never bothered me until I started Faslodex. Always tell MO when something doesn't feel right so it met can be ruled out but with all the crap we have to take, it could be from side effects.
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glad you guys like the heating pad - def worth it. I use mine a lot. I hitch up my shoulder funny when I knit and this helps me to relax the kinks out. Mine has a kind of slightly weighted collar - filled with some tightly packed beads or something? - so it really snuggles down to you & doesn't slide off. There's a little snap button on the front of the collar but I usually don't do it up as the weight of it keeps it in place if I'm not fidgeting too much.
I have a different heating pad for my feet at night. It's an older model & I was thinking of replacing it or getting a backup but I don't think they make my kind anymore. Mine stays on for 8h. The new ones have auto shut-off after 1-2hrs. Useless for nighttime. I have mine on my feet all night. I also have a heated blanket which I position over the rest of my sore bits.
This is all wonderful except when I get a hot flash or spike a sudden fever lol... then everything goes flying off
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cyathea, my intense pain is mostly in the mornings and at night. It does take my breath away when I move incorrectly or too fast like a flinch, cough, or sneeze. I hope it subsides and will address this in person at the next ONC visit.
Yes it def could be rads, chemo or SE from tamoxifen. It's good to mention the pain in detail to your doc and get scans to ease your mind. Mine runs away with things.
Even if you do not need a strong pain med now, it is good to have on hand and let your doc what you plan to do whether it's only take when you really need it or to just have it on hand.
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My daughter bought us that heating pad for Christmas. It’s lovely.
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Before I was diagnosed the pain was terrible and I could barely walk sometimes. I had radiation very early in my treatment which made a tremendous difference.
For pain, I take CBD oil during the day, and a Tramodol at night. For now, this schedule keeps the pain down. One time I felt so good that I forgot to take my pain medicine for several days, and I thought, "it's a miracle!". But then the pain came back rather strong, and it took a while to tamp it down. Now I try not to forget to take my pain meds.
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Thanks for all the input! I’ll keep trying to have a positive attitude about the pain until my next scans and follow up with my MO.
I feel lucky that I had a relatively pain-free life before cancer—many good years! As I adjust to my new reality, I realize that I still have good years ahead but I’ll need to make some adjustments like using that wonderful heating pad that moth shared.
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pre-mbc dx it started dull. But then compliacted when the chiropractor tore into it. Should have/ could have gone for mri then, 7 months earlier and would have found cancer sooner. Stupid stubborn. It got quite painful and paralyzing before finally got mri.
edited to add Most of the pain was referred 5" down the arm from the head of the humerous. The pain is now about 4" lower
Re my elbow pain now. The sports med dr talked to MO and he saw xray report and decided its time for mri and pet. Haven't had pet in almost 5 yrs. It's gradually been getting worse. How long do you tell yourself it's just the arthritis? Always worse when it gets cold. And it's winter. PA offered mri a few months ago. Worse now.
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When I was first dx with MBC I had some pain around T11 that radiated to the front. The pain management docs were pretty sure that that pain was nerve pain due to radiation.
I didn’t really have bone pain until about 2 cycles into ibrance. Then it was a dull ache in my right front ribs that sometimes radiated to the back. It would also turn sharp if I moved wrong or worked out too much or did core workouts. I used a lot of Tylenol and ibuprofen. But I like my kidneys so I needed to find something better. I started working with palliative care and the doc and my MO convinced me to try opiates. We tried oxycodone first but I had so much breakthrough pain that it just wasn’t helping and I also had a weird SE. So they switched me to morphine. I’m on the lowest dosage extended relief and I have almost no bone pain. I went from like a 6 to about a 2 or lower. I still have neuropathy in my feet that flares up occasionally but I’m taking gabapentin to help it. And I do have lower back pain, mostly muscular I think.
I’ve been very lucky to work with palliative care. We check in every month to make sure everything is going okay and to make sure dosage is good. My biggest problem that isn’t addressed with current meds is my chronic headaches. I’ve had imaging and it’s definitely not Mets. But I had them before dx so I think they’re just being consistent.
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Katyblu - that is encouraging that your bone pain is controlled now. Could dehydration be the cause of the headaches?
I spoke with a different oncologist yesterday who went over the possible options for a path moving forward after my latest progression (pleural effusion). We will decide what to do once I get the results from the Guardant liquid biopsy late next week. If the blood test doesn't reveal anything, she strongly recommended IV chemo - weekly Taxol. Has anyone done Taxol? How did you feel, and were you able to do your normal activities? I'm also thinking that if I end up doing IV chemo, I will get a port put in. Can anyone recommend a particular brand of Ice socks and mittens to try to avoid neuropathy from chemo? I looked online, but many only keep cold for 20-60 minutes which probably isn't long enough.
I am just thinking ahead because none of this has been decided. The doc did say yesterday that she recommends a different class of drugs from Ibrance. So I thought Verzenio might be the next thing, but it will not.
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