Bone Mets Thread
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el_tigre- I think RK2020 had some esophogitis? Someone on here has, or rather more than one person, due to rads higher up. I remember in 2020 illimae couldn't eat anything due to a rads issue. I suppose its best to just remember that they have to list all the potential side effects where the scatter could hit, but its not guaranteed you will get it. Before breast rads they told me I could get a sore throat as they were radiating up in levels III and IV and I've been ok.
They had moved my Xgeva injections to every three months back last September because my mets were so stable - really hoping we dont have to go back to monthly because it gives me a fever every time, although if it works to fill in those tumor holes then great.
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I am now doing Xgeva every 6 months. I have been getting Xgeva for over 4 years. We went from monthly to every 3 months, and now my MO wants to do every 6 months to prevent complications-- ONJ or bone fractures. I read that 6 months is ok, just not to go longer than 6 months. So fine with me.
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Hello everyone. I haven't been on for a few days as I'm finding this site so slow still and difficult to navigate! Anyway, I'm just catching up on your posts.
Sondra: I started Lynparza in January, and so far it's been okay (less side effects than Verzenio. I continued it through my most recent round of radiation. I hope it goes well for you!
El TIgre: For my most recent progression on my femur they also recommended traditional radiation, not SBRT. I think they felt that given the fact that the site was weight-bearing and close to the original site of treatment, it was too risky. I completed traditional radiation last month, and so far so good. My skin was mostly fine, except the back of my leg, which I neglected to check! It wasn't too bad tho.
Hungryfrittatta: Best wishes. These decisions are tough, but it's good to know you have options.
I'm doing okay. Almost two months of Lynparza down. Aside for the occasional wave of nausea, side effects aren't terrible. I have fatigue, but I'm still working full time (in person) and keeping up with young kids. I had radiation to my femur, and I'm hoping things stay quiet now.
All the best for all of you!
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I appreciate all of you who are dealing with bone mets. I was diagnosed with mets to the lung and spine, which I was told counted for bone.
Whenever I get scanned or MRId, it's usually for my lungs/torso. Originally, my breast surgeon told me if you're going to have cancer, then having it in the bone it doesn't spread as fast. That's not exactly what she said, but that's how I heard it.
I don't have any spine/bone symptoms, but I'm not forgetting about it.
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amontro, bone only mets patients have longer overall survival according to studies I've read so yes, your oncologist had a point
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Hi Hungryfrittata. I have skull mets as well including on the clivus and occipital condyle, both right side. In addition, I have mets on my c-spine. They were found a bit by accident as I suddenly started having numbness and tingling of my right arm which turned out to be non-cancer related but the skull mets could be seen on the MRI (bone scans are useless for me). My MO indicated that they don’t typically scan the head/neck as it’s rare for metastasis to show up there.
We decided on a wait and see approach given the potential for complications from the radiation. There are a lot of nerve bundles running through that area so, while unlikely, there is risk of unintended consequences. All was well for about a year but I ultimately developed severe headaches. It started as continuous low grade headaches that worsened in severity until the were absolute blinders. Scans didn’t show progression but it only takes a millimeter of growth pressing on a nerve to cause issues. (In reality this was the first sign that Verzenio/Faslodex was failing. Three months later the liver mets appeared.)
I had five rounds of radiation to my c-spine and skull which completely resolved the headaches. Overall the side effects were manageable. I didn’t end up with the sore throat. I did have some discomfort initially but nothing severe. The worst part was I lost my sense of taste which was pretty depressing at first but thankfully it slowly returned and by about six to eight weeks out it was back.
Sounds like you are getting good advice from your medical team. Hope treatment beats it back!
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Has anyone heard of buttonsmachine? She wasn't doing well and it is been silece from here fore a while.
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Thank you sondraf & star2017
sadiesservant - I have few skull bone mets as well. No pain just freaked out it's there.
As for SBRT I messaged my new radiation oncologist and he called me back instead of replied to an email. That was refreshing. He mentioned that SBRT is a more effective radiation method but they typically use that method on patients with 3 or fewer bone met sites to knock it back aggressively. I can see the reasoning but still would like the best of the best. But since my T11/T12 and surrounding areas will be zapped it sounds like the traditional radiation method makes sense.
I hope all are doing well today after the lose of an hour. (for some)
tigre
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I start SBRT in a little over a week. I'm scared but also praying it stops this horrible pain. This pain has been going on for months.
The last time I had a spot on my rib, I got targeted radiation, not SBRT.
Susan
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Thanks for sharing, sadiesservant. It seems like the rad onco team in our hospital are split between “radiate now” and “wait and see, chemo might get it.” We’re planning to discuss with my med onco, rad onco, and neuro to figure out the best approach. They are mainly concerned about the tumor in my atlas since that can paralyze me. ButI think we will be pushing to radiate that spot now rather than wait for symptoms.
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I was re-diagnosed in 2018 and I'm still getting xgeva every 6 weeks, I guess because I'm tolerating it well enough? I never knew you could go longer, I may bring that at my next appointment.
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Hi everyone -- I hope you've been doing well during this forum break!
I had a PET-CT this week. No new mets (yay!). The hip met has decreased in activity further, but the fracture looks more pronounced. I'm not in pain, but wondering how much I should worry about that fracture. Haven't heard back from the ortho onc yet.
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Yeah for no new mets!! I have hairline fractures in my spine, scares me to think one day I might fall and be paralyzed, apparently it scares my husband too because he is always pointing out steps to me, bless him. I live by "if it's not hurting don't worry about it'. I would mention it at your next appointment though and maybe they can alleviate your worry
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Hello everybody - I've had bone mets since Dec. 2019 and taking Ibrance, Xgeva and Foslodex since January 2020. In February 2022, I was hospitalized for Hypercalcaemia when both my kidneys shut down from calcium in my blood being so high. Has anyone else dealt with this problem? Honestly, I didn't even know it was a possibility until it happened to me. My calcium was still slightly high last week at my onc appt and he ordered fluids for me, which I received yesterday in the office infusion room. I'm getting scanned in early May - my last scans in January showed stable mets. In your experience, does Hypercalcaemia mean most likely my bone mets have spread? I'm off any calcium supplements including vitamin D.
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Hi sharware,
Hypercalcemia in cancer occurs in about 10-20% of patients with solid tumors (not limited to breast, it also occurs with lung etc). It is a complicated condition - it might mean more bone mets or just more activity in your bone, especially osteoblastic bone resorption. This condition can also happen if you do not have bone mets - the cancer itself can cause it regardless of its lcoation.
The cancer triggers a lot of different process through releasing hormones. One of the hormones affects the parathyroid & it is the parathyroid which triggers the osteoblastic bone resorption which dumps calcium into the blood. That same parathyroid hormone also stimulates the kidneys to hold on to calcium instead of dumping excess into urine.
So it's a long chain reaction that your doctors will try to stop.
I hope the explanation of what the underlying mechanism is helps a bit.
Your team should be well versed in dealing with it because unfortunately it is a pretty common complication.
I'm sorry you're going through this & hope your team gets you on track soon!
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Hi moth,
Thank you so much for taking time to write this explanation. Neither my kidney doctor nor oncologist gave such a thorough reason for this occurring out of the blue. As I get more information about my condition, blood work and scans, I'll post it here. I sure hope they get thisunder control soon. Thanks again and I'm sorry we both find ourselves here. I wish the best to you in your journey also.
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Hi ladies, I have a inactive MET in my S1 joint which has been causing some pain lately. I have a MRI scheduled for Monday so hopefully they can figure out what is going on. I'm concerned I may have a stress fracture where the MET is. Has anyone else had a stress fracture in the S1 joint? How do they treat that?
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Simone80, I've had a compression fracture at T8, still do. I was offered a TSLO brace which they also call a "clamshell". I declined as I felt it would make my ambulation worse to say nothing of the fact that I would feel like a ninja turtle. My fracture is right between my shoulder blades so I have to be careful doing motions like bending forward and pulling or lifting over my head. I'm not sure how they would treat a fracture at S1. That is so low on the back/pelvis I'm not sure how could be braced very well. I hope the MRI can give your doctors better guidance on that.
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Thanks for the response emac. I hope they can figure something out.
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Ladies with hip mets - what did those feel like?
The top of my right leg has been I dont know, irritated or something in the last two weeks, but I can't tell where the pain is coming from. It only started after doing squats at PT and then standing at that concert for too long (was the same day!). When I stand up and take a step to move, I do a little shuffle so that leg doesnt take the full weight, but it doesnt feel like its going to collapse or anything - and once I get moving its fine.
I thought perhaps it was coming around from the lumbar vertebrae, but it doesn't feel like that, or perhaps its the muscles in the front (psoas and all that) which got lazy post diep. I dunno - every time I think its something normal its not!
From the initial scans I think there were some very tiny spots at the top of my hips which have not been of concern, but are they in the CT field? I havent had a bone scan since dx and never had a PET. No pain at night, its not increasing in intensity, and I dont feel like it needs support or anything. Dont need painkillers, its just annoying.
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Sondra, I have a stable met in my hip, but that one doesn't bother me. Hopefully someone else will chime in.
I did have a MRI yesterday of my lumbar region because I've been having pain in my sternum. Good news is I don't have any fractures and the mets in my S1 and S3 are stable. I still have a lot of pain and am hoping they approve rads to help with that. I sure would like to get rid of those.
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Sondra,
When I had my femur surgery last yer, the docs first thought that my mets were in my back somewhere. Turns out that when they really scrutinized my CT, one of the radiologists spotted a problem with both of my femurs -- one causing a hip replacement, the other causing a rod to be inserted. I was in pain, but not horrible pain. In fact, the pain felt like it was emanating from my butt on the right side -- no pain on the L at all.
I would ask a review of my scans again by another doc or two and see if they see anything. I swear like 6-8 docs looked at my scans until they came up with this. Good luck.
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Sondra,
I felt pain on my the side of the hip, especially when lying on that side. The leg also ached and certain movements became uncomfortable. Lifting the leg became hard, especially when driving.
Also, none of my mets show on xray, and while my hip met showed up on CT, the small met on the sacrum and on the femur did not show up on CT. It was the PET scan that caught those (MRI later confirmed, when we weren't sure). You might ask about a different scan/imaging.
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Thanks ladies -
Im wondering if its driven by this terrible letrozole brand I have at the moment (ha! the actual Femara itself) which has caused the worst side effects of them all. Its been causing a lot of issues with the achilles tendon on the other side. I see MO in a little over two weeks so I will raise it then. In the meantime I have RO next week I can ask about if its in the scan field, and try and get my preferred generic today or tomorrow (have to get the right pharmacist at about 2pm - that usually does the trick!).
My next scans are early May - I think the 5th - so there is time to rearrange and do different ones if needed.
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Hi Sondra, chiming in on the hip mets. I have mets all over including my hips and the right, in particular, gives me grief. Generally my hip aches pretty much all the time, including in bed, and there is an aching pain down the back of my leg, behind my knee. A few years ago, it got so bad that I was having trouble walking and was experiencing sciatica. They zapped it with one round of rads and that helped considerably. It’s been bothering me more again which may be a sign of further progression. It can also be normal wear and tear of course as the hip joints are a common spot for degeneration, particularly in women. Plus chemo did a number on my hips when I originally had adjuvant treatment - cartilage falls under the rapidly dividing cells category like hair follicles which can be collateral damage with chemo. Femera can definitely also cause some issues.
You are correct in questioning if your mets will be within the CT field. My MO typically likes to scan chest and abdomen which does not catch the hip joints. They now seem to be including the pelvis in my scans but that’s because my liver is unusually large, extending down quite far into my abdomen instead of being tucked up by the rib cage. I have never had a PET and bone scans are useless in my case.
Hope your RO can shed some light on the cause!
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Hey, all. I just had cyberknife / SBRT to my T9 and T8. I've been in massive pain for months now and was hoping this would help with the pain. I asked the radiation oncologist but she was non committal. Even if she'd said many people see improvement in pain that would have helped. Plus, now I'm nauseous since they were hitting parts of the stomach.
Has anyone seen the pain go away with cyberknife? I could use some hope. And if folks had nausea, how long did that take to go away? I would be so grateful to hear. Being in such pain for so long, I feel like my hope is also gone. I'm a mess.
Thank you all.
Susan
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Hello Gonegirl - I am so sorry to hear about your ordeal but wanted to give you some hope from my experience. I first had bone mets starting in my pubic symphysis and it was very painful. The fact that I had pain was the tip off that something was wrong. That something turned out to be the first of my bone mets. The radiation oncologist recommended SBRT (I had five rounds) and the pain went away. After the second treatment, I had relief. My rads were not near my stomach, so I didn’t have nausea, but I did have diarrhea for awhile. But that went away after a couple weeks. Hopefully your nausea will subside too. I’ve been told if I have more bone pain, we can do more radiation to take the pain away. I believe you will feel much better sooner than you think. Stay strong and yes, you should start to feel better. Bone mets can be very painful but radiation treatments can help prevent further spread of cancer and alleviate symptoms like bone pain. Your oncologist should have told you this. Thinking of you, Sharware
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Sharware. Thank you so much. The radiation oncologist I worked with I'm sure is technically good, but clearly didn't seem to have a decent bedside manner. This helps to hear your experience. I've read that pain relief can take a bit to kick in, but the doc scared me about it working at all. So hearing that you experienced relief really helps.
A counselor told me once that pain is the thing that'll break people down the quickest, and that's what I've experienced so far. So having even a bit of hope for relief, that means everything. Thank you so much.
Susan
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sadiesservant - its calmed down quite a bit with rest and feels much better. Ill talk to the team, but pelvis is in the scan field of the CTs they give me so if it was a met I would have thought it would have been picked up in late January. Its still really tight in that area by the diep scar, on that side, so I dont know if there is a stitch in there or what but the tightness is from the jutting out part of the pelvis down to the front of the thigh. Its probably a combination of things and lord knows I had many lower back/pelvis problems way before cancer. I wonder if this was in the radiation field as well.
PT was having me massage stomach skin to loosen it up post diep and man, its a) creepy feeling and b) inevitably results in a few extra bathroom trips.
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