Bone Mets Thread
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I used to have a bone scan every 12 months while I was stable after my initial chemo but now have it every 3 months as part of my EXTEND trial protocol.
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I’ve had several bone scans, more or less once a year. Having said that, bone scans seem useless for me. I am now used to reading “significantly underestimates the burden of disease in this individual”.
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Sadie, what does “significantly underestimates the burden of disease in this individual" mean?
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Ha! It means that the bone scan shows sweet bean all but when I have a CT? Holy moly! Mets everywhere. I think the issue is that with my slower growing disease, it doesn’t take up the radioactive marker to the same extent as a “hot” cancer.
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Hi everyone
I have only joined this forum a couple of weeks ago, I have posted on a couple of other threads but thought I would fire some questions to get some advice.
I have extensive bone mets, mainly in spine, ribs and left femur. Prior to my diagnosis in March I had severe back pain for 6-7weeks which at the time I thought was a slipped disc!
It turns out the cancer had weakened my spine and I had 4 compression fractures on the vertebra. I believe they are healing but my oncologist doesn't really mention them.
When I came home from hospital in March I was using a zimmer frame as my walking was affected. I am now walking without the zimmer but I am a little hunched! I'm hoping this will improve with time and treatment.
In terms of painkillers I am on zomorph, baclofen and Paracetamol. I take these morning and evening.
Throughout the day I am not in any pain and can move around etc but I do have soreness and aches. This is mainly in my ribs, for example if I bend down to pick something up my ribs feel squashed and its sore. My back does get tired but I make sure I do a bit then rest.
I don't really want to ask my oncologist to increase my painkillers for this soreness as its not really pain if you know what I mean. What does everyone else do to manage aches and pains?
I only started treatment in March so hoping in time my aches may ease as the treatment kicks in.
Any advice appreciated.
I am on ribociclib, zoladex and letrozole.
X
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Hamer,
Welcome. I see that you have got mets to your spine, ribs, and femur. I am in the same boat, plus I have liver mets.
I don't want to go through my whole recent story, but I would simply urge you to especially watch the femur issues. I was recently hospitalized bc doctors suspected an impending femur fracture on both hips, and had surgical procedures done on both. My immediately prior treatment was keytruda, but I had been on Ibrance and fulvestrant since mid 2019.
My onset with my femurs was similar to yours -- I don't know how the medical system works in the UK, but I'd suggest a consult with an oncological orthopedic doctor.
Good luck.
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Hamer,
I also have extensive bone mets to the spine, ribs, pelvis and femur. Yoga has been very helpful for me to manage the soreness and to rebuild strength. If you MO approves, you might want to try a gentle yoga class. I would suggest Iyengar yoga since it is well established in Britain. I taught Iyengar yoga for many years and have made a few videos for people living with MBC, in case you want to try them. Start with Class 1 and then as you get stronger, move on to Class 2-again if your MO approves.
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Hamer, have you had any radiation yet? The few sessions of radiation GREATLY reduced my pain. Have you seen an ortho oncologist? Mine was concerned about my femur collapsing or breaking, but so far we've been ok with that.
I found it very helpful to see both the RO and the OO (radiation and ortho oncologists) to evaluate my situation. I'm not seeing either of them right now, as I'm fairly stable, but I'd go back to either of them in a heartbeat if and when there's progression.
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Has anyone had C or T spine mets radiated and the RO did not also use a Neurosurgeon ??? My RO is not consulting with a neuro doctor (to my knowledge) and I know (think, believe) Sadie mentioned her's did ?? Is that common??
Also does anyone have a good RO in the Virginia, DC or Maryland area?? I am always looking for 2nd and even 3rd opinions...
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Hi Nicole. My RO did not consult with anyone else. My MO referred me back to my RO and we zapped the mets on the base of my skull and C-spine. Not sure why a neurosurgeon or neurologist would be necessary since we know what is causing the problem.
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Sadie...Interesting I could have sworn it was you that told me that...well *shrugs shoulders* lol ...it was someone...lol
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Nicole - The first time I had a spine met, my RO had me meet with a neurosurgeon. This second time (treatment to happen in a few days), I believe my RO is consulting with the same neurosurgeon, but I haven't met with him directly. For me, it was helpful to have the neurosurgeon involved to be more proactive about possible complications in the future. Best of luck!
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J....where are you having radiation T or C spine?
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T spine (T11 and T12, original met was T10).
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Nicole,
When I had radiation to the Thoracic spine, my RO did not consult a neurosurgeon.
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Hi Sunshine99
Thanks for replying. No I haven't yet had radiation, it was mentioned early on as a possibility but not been mentioned since.
When I was diagnosed they sent me for xrays on my legs as they wanted to check if I was OK to weight bear. I was told that I was OK.
I haven't yet been referred to an orthopaedic consultant Re my spine etc. Do you think I need to push for this?
At the moment my oncologist doesn't seem too bothered when I mention anything about my bones!
I have not really had any advice Re the spinal fractures either. When asked how much moving around should I be doing, I'm told "it's up to you, see how you feel". I have been pushing myself a little especially with walking but a little concerned with my spine, I've also lost about 3 inches in height.
Chicagoan - thanks for the yoga videos, I will definitely give these a try. I have a review with my oncologist on Tuesday next week so I will run it past him.
I will certainly be pushing him to refer me to orthopaedics!
Thanks everyone
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Hamer- are you on a bone strengthening drug like Zometa or Xgeva?
I second the yoga recommendation- I think it is why I have little pain.
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Hamer....welcome, and sorry to hear about your bone mets. I have some similar experience, which might be helpful....I started toward an MBC diagnosis with a vertebral fracture that was attributed to osteoporosis until a DEXA scan showed I didn't have that. However, in the meantime, I researched a lot of osteoporosis physiotherapy and movement suggestions and I still use those, as in the meantime I have developed 3 more fractures. I think it is important to see a spine doctor or orthopedic oncologist (I've seen both); the oncologist that treats my MBC does not feel confident making recommendations about how to deal with the fractures, just how to treat the cancer. From spine doctor, orthopedic oncologist and osteoporosis info I've learned to try my best not to bend my back forward at the waist, and certainly never to do so bearing any weight. I also get into bed lying down on my side and then log rolling over to my back. It hasn't been totally successful in preventing more fractures (my bone mets are very extensive) but the fractures I've had since the first awful one have been less severe. I am also going to have a consultation for kyphoplasty on the most recent one, though I'm not completely sold on this as some of my doctors suggests it has only a 50% chance of relieving pain. But that might be worth looking into, I decided to partly because I am also somewhat hunched now and have lost height, and I want to see if I can alleviate some of that so I'm not looking at the floor in five years, hoping I make it that long. I find the pain tolerable and don't take pain drugs except an occasional Lidocaine patch. It only gets bad if I overdo. I also want to try some of Chicagoan's yoga....though I'm hoping this doesn't involve back bending?
I also had radiation at the beginning of treatment, and, Nicole Red, no neurosurgeon assisted my RO. I do think the radiation helped some....there are days when I feel perfectly fine.
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Hi NKB
Yes I am on xgeva bone strengthener every 4 weeks. I have had two so far, third one due in two weeks. How long do they take to kick in?
prairiesea - yes I think my oncologist is the same. If I ask about my spine or the fractures he doesn't seem confident in answering. I appreciate his main focus is the cancer but I want to make sure I'm doing things right in terms of movement and rehab for my spine.
I do try and bend through my legs now rather than bend my back at the waist but things still feel tight when I bend so I need to be careful.
I have read about kyphoplasty as I too did some research on the spine etc. I am seeing my oncologist next Tues so I am going to ask to be referred
Thanks for sharing your info it certainly gives me a few things to look into.
X
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Nicole, I had radiation to the Tspine for a met at T7. My MO referred me to a neurosurgeon only because my CT scan showed that there was also a compression fracture that caused the bones to encroach on the spinal cord. I consulted with him to make sure there was no spinal cord involvement.
Hamer1 - I had mets to the spine and right hip. My MO primarily is focused on the cancer and I consulted with an orthopedic surgeon to stabilize the hip from fracture. He put a rod in but after that I have had very little dealing with them. It seems any time that there is risk of fracture or questions about the bones by my MO the concern is deferred to orthopedics. Paracetamol I believe is the UK version of Norco in the US (tylenol and hydrocodone?). I take that at night when I am really painful. My primary pain control is Tylenol and ibuprofen. Partially because it can be hard to get prescriptions for opioid based medications where I'm at and also because it seems to be okay for pain control most of the time so I save the opioids for when I need extra relief. I also use heating pads a lot. In terms of trying to stay mobile and active I don't tolerate long distances walking. I have stuck to swimming at my local gym and doing light stretches and shorter walks as tolerated.
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My radiated Mets T7-9. RO definitely consulted with Nero surgeon to make sure my spine was stable
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I have mets to the spine. So far I have not had any pain. In my past before cancer, I had plenty of spinal problems (herniated discs) Lately I feel a slight zap of pain if I move the wrong way. It feels exactly like my disc is about to go out. Is this what mets feels like? Kind of worried.
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Did anyone know Moomala?? She hasn't been on here since last Aug
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Prairiesea-Do you live close to Champaign-Urbana? If so, I would highly recommend the Yoga for Cancer class offered at the CU Iyengar Institute. The teacher is very skilled and you would get a lot of personal attention. What helped me with my spinal compressions/fractures was hanging from a sling to create more space-but you would need to do that under the guidance of an experienced teacher. I think my videos would be safe for you to try-we don't bend from the waist but we do extend the spine from the pelvis-extending to a wall to create space. Watch it first and see if you think it would be ok for you.
Maybe NKB and I are just fortunate but I do think yoga helps, if it is under the guidance of a skilled teacher. I have numerous healed spinal mets and a few healed compression fractures but have never needed to take any pain killers (yet) in my first five years of living with MBC.
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Does anyone who had radiation treatment have pulmonary fibrosis and/ or lung collapse? What do you do for the pain? Does it get better?
I had radiation on my right breast and my T11 spine. My recent CT noted fibrosis most likely due to treatment and my MRI noted bibasilar atelectasis changes in my lungs.
The good news is no new mets! But I’m feeling greedy for a better QOL. I’m tired of being tired and in pain0 -
Thank you Chicagoan, this is helpful. I will watch your videos before participating to see if I think I can follow along. And thanks for the reference to the CU Iyengar Yoga Institute Yoga for Cancer class....I am in geographical range for that and it sounds like a good option for me.
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Nicole- Yes, I knew Moomala - we took Afinitor at the same time- I wondered where she was and hope she is just taking a.break.
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Hi all, just want to share this very informative video about bone mets from Living Beyond Breast Cancer. A really thorough look at everything to do with bone mets and it is very recent. At the end she talks about possible new therapies, she’s very hopeful that the COVID MRNA vaccine technology will evolve into a therapy or vaccine for cancer.
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Nicole, my RO didn't consult with neuro. I had rads to T11. I think it depends where in the vertebra the met is. If it's nowhere near the spinal cord, then I don't think neuro needs to be invovled. Mine was smack in the middle of the vertebral body. If you can't remember your bio, here's a good picture of a thoracic vertebra & the enervation. you can see though that it would really depend on where the met is.
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Olma, it is informative indeed, interesting to know having an endocrinologist in. I was pushing to get an orthopedic opinion 1/5 years ago, but he was not much of help. Thanks for sharing.
Nicole, I saw neuro surgeon before I started radiation and seeing neuro oncologist quite regularly after vertebrae fractured/ radiation courses completed. I think Moth explained well, butif you have further questions, please ask.
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