Bone Mets Thread
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I have a question for those of you who’ve had radiation. I’ve had two (of 10) treatments to L2 and sacrum, and my back pain is worse than ever. When did you get some pain relief? I’ve been taking way too much ibuprofen and Tylenol (and they’re not doing much).
Also, if you have spine mets, what kind of exercise do you do? I haven’t been very active since the pack pain started. I definitely need more exercise, but it seems that any physical activity just makes it worse.
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The radiation keeps working on the mets for some weeks after the actual radiation therapy is finished. I think they told me up to either 6 weeks or 12 weeks later, so expect some resolution to come. I hear you on the pain, though - I saw ladies here who got a little zap and were back at it in three days and it took ages for my poor sacrum to stop hurting and I thought something was wrong with me too.
I was getting relief (to where I could walk again but with crutches) by about my 4th of 5 doses - at the first dose I needed a wheelchair to get to the department. About two weeks later I could walk to the grocery store on my own, and three weeks later (xmas) I helped cook dinner, but had to sit down towards the end. I had crutches for 3 months, a cane for 3 or so. All that time I took a LOT of ibuprofen and tylenol on the tylenol every 6 hours, ibuprofen every 8 schedule. That started to reduce significantly after about two weeks, and at eight weeks I was only on one or the other once or twice a day.
Exercise wise - MO isn't keen for me to do a lot of heavy lifting exercises with weights over my head, but I do body weight exercises, some light weights, cycling,and if I can ever find a decent pool, swimming. A lot of walking and some stretching with bands because I hate yoga. Last summer she cleared me for ice skating and rollerskiing, which I was surprised, but she said she has ladies with spine mets horseback riding so hey.
You may be experiencing tumor flare as the tumor dies off, but if you really can't get on top of the pain with OTC, I would flag with your team to get you something stronger for the time being. It won't be a long time, but pain is really exhausting and its no use to be in pain when you can get help.
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My mets do not show on CT or x-ray, but an MRI and PET both show them.
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I deal with a bunch of bone mets including spine. I walk when the weather is nice, meaning not this past winter! Late last summer I started a line dance class once a week. Surprisingly, this has greatly helped with my balance, very important as we age. Line dance steps can consist of weaving feet behind and in front of each other, pivots and turns, kicks, scuffs, shuffles, leaning back, leaning forward and shifting body weight from left to right and vice versa, and then putting it all together to a certain music rhythm: fast, slow or in-between. It's generally not strenuous, and it's fun.
I also started water aerobics about the same time as line dance and then eventually gave that up for water pilates and water yoga which seems like a better fit for me. I could never do pilates or yoga on dry land, haha! I just started them in January so have only been to a few of the classes, I make it to one a week. The water makes it fun.
I don't really exercise to try to lose weight. For me, it's about trying to stay limber. Easier said than done, my body feels and moves differently since mbc and years of treatment. But I believe in that saying, “a body in motion tends to stay in motion." I like to keep moving even if it's at a slower pace.
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Divine,
How long have you had MBC. Do you have bone Mets only? I am needing encouragement that I can live with this. My cat scan and lab tests show tumors shrinking. I don’t know by how much? I take 75 mg Ibrance and Faslodex injections.
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Cancer seems to be so unique to each person. I have bone mets only right now. Most are in my spine with one large one in my right femoral neck. My mets don't show on XRay at all but they do on bone scans, CT and MRI and PET. I don't think one sudden deep breath would cause enough motion artifact in the MRI to hide anything. The software they use any more is very clear and can correct for motion to a reasonable degree. I think if it were enough to make the picture unclear the tech would have had that image redone.
I have had radiation but still have pain. My MO just gave me a good scolding for not taking my prescription pain meds as often as I should. I have relied too much on Tylenol and Ibuprofen and he assured me that using my prescriptions is not just appropriate but necessary if I am going to sleep and move better. I'm trying to get used to that line of thinking. I also used lidoderm patches. I wouldn't say they help a lot but do help some. I think they work better for muscle pain than bone pain in my experience.
Like Divine, I exercise for mobility and functionality. Since my mets are in the spine I lift but only on machines where the motion can be controlled and my back supported. I focus on building my back muscles. I also do the elliptical and swim. I am trying to tolerate longer distances walking but walking is hard for me. The met in my right hip/femur is very painful and I have a lot of pain in my left knee/tibia so I try to stick to stretching and machines that do not have a lot of impact right now.
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LI77 - I took diclofenac (sp?) as a high-powered anti-inflammatory before and after radiation for pain. It really helped when nothing else would. Radiation to those areas creates immense inflammation by design, so pain management is helpful and short-term. I agree with Sondra - get ahead of the pain and stay on top of it. I'm hoping your medical team is supporting you in this.
I'm 8 months out from radiation and my exercises consists of rowing (machine), weight training, yoga and walking (when it gets warm enough.) I was really confused about exercise early on. A very helpful ortho-oncologist I saw helped give me confidence. He said that it would take a bit to trust my body again, but that would be my biggest hurdle; my bones could handle it. I don't know what your specific situation is or if you have mets that involve more weight-bearing bones, but it might be helpful to talk to an ortho for peace of mind? If it's limited to sacrum and L2, exercise sounds safe, but I'm absolutely no expert. Best to you as you finish radiation treatement!
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Positive2Strong, I found the lump in my breast in December 2010 and within weeks was diagnosed with bone metastases. That means I’ve been living with mbc for 11+ years. If you are getting good scan and lab results, my suggestion is to allow yourself to at least feel cautiously optimistic. It sounds like your body is responding to treatment. That’s a good thing! When I get good results of tests, I let myself relax for the time being. I had scans earlier this month which said there was no change, the onc said that was good, and I will scan again in about four months. In the meantime, I try to live above it. Yes, I think about it every day but I still live a pretty normal life.
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Positive2Strong.I was so happy to read you have Tumor shrinking that is so good to hear
I will know in April if my treatment is working - it's always so hard in the beginning to be positive about this
Take care
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I do weights and walk about a half mile a day because that's all I can do. I split the weights up, a little in the morning and a little in the afternoon. It's hard but I remind myself that 2 years ago I was in a back brace and using a walker and now I occasionally use a cane but mostly walk by myself
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My exercise was warm water pool classes MWF mornings until Christmas. With the Omicron virus skyrocketing, I did not feel safe unmasked so went on hiatus until a month ago. That approach also let me avoid the crush of New Year resolution makers who plague our fitness center every January!
Giving my break an additional week in order to allow the snowbirds from our area to begin heading south, I started going to the gym for lower body weight machines (protecting my lymphedema arm) and recumbent bicycle work however I find the repetitive nature of those activities very boring.
In early March I qualify for a 4th COVID-19 vaccination. After that I will finally return to my old routine with fun music and instructors who use a variety of movements. It's not really aerobic because we socialize with each other and, if too vigorous, I get winded due to anemia…
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thank you Moth and Divine,
It seems I need constant reassurance. My right leg is recovery from femur rod surgery. I was getting better each day slowly, but Wednesday I had severe pain to use my crutch again and then I start to worry.
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Beth,
Thanks, I hope your treatment kicks in. It is hard to think about this every second. Weird how something can set me off. if I could just walk without pain I think I could forget about for a second.
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Positive, it's okay to need constant reassurance. You can find that here, and you can find it other places, too. What I did was start to read books that were uplifting. I would watch movies or documentaries with hopeful messages. I keep a Pinterest board I fill with inspirational quotes that speak to me and every once in awhile I browse thru and read them and look for more to pin.
We feed ourselves food to keep our body nourished, and I believe we need to feed our minds as well. I'm not saying Stay positive! Be upbeat! Get happy! This isn't about toxic positivity. I feel my feelings, whatever they are, and they are up and down. But I like to supply my brain with a regular flow of heartening messages. It may not be every day or even every week, but I know when I need a pic-me-up. Life in general is challenging so anyone could benefit from doing this.
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DivineMrsM, I love your post. I’m trying to do the same thing. I can’t ignore the pain in my back, but I can try to focus on other things, and most of the time I do.
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Hi
Yes I work to mainly 1)keep my insurance and 2) keep distracted from the pain when I need to be. I find I get along better mentally when I have something in front of me to focus on. I just bought embroidery kit and looking at a water color art box to do while waiting for my pain to be taken care of. (by below procedure - hopefully- and if not then by rads).
Has anyone heard of :Vertebroplasty procedureVertebroplasty is an outpatient procedure for stabilizing compression fractures in the spine. Bone cement is injected into back bones (vertebrae) that have cracked or broken, often because of osteoporosis. The cement hardens, stabilizing the fractures and supporting your spine.Nov 3, 2020.
I have a fracture of T11 and my ONC put a referral in for this. We believe my fracture is still within the 3 months window for this procedure. I was wondering if anyone has had this and what their experience is with it. (gulp) The whole needle in my back creeps me out and I hope to not be conscious while they do this lol.
thank you
Tigre
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El Tigre,
I have not had this procedure but consulted about it last year with a neurosurgeon.
The info that you have is helpful. However, if you go to one of the larger cancer centers, you will find more info about the procedure itself, not so much in diagrams but in text. So I'd look at info from MSK, MD Anderson, Hopkins, Dana Farber, and do some reading. After talking with the neurosurgeon, I was much less wary about the procedure. I don't recall anything about a 3 month window?
Have you consulted with a radiologist to see if that is an option for you? That might be another possibility
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BevJen
Yes the radiologist oncologist my ONC spoke to mention it was a procedure that she recommended for certain patients if they were within a 3 month window. I have not heard of 3 month window as well only that they prefer to do it when it is not scarred over I guess.
I have not met with either the rads ONC or this procedure office yet.
I will check those recommendations out for research as well as OHSU where my ONC is and the procedure might be. I hope to see if it is for me or not and then jump my butt into rads.
thank you
Tigre
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Hi Tigre, I had Osteocool and Kyphoplasty in early Sept. Overall it was an extremely positive experience.
Vertebroplasty and kyphoplasty are relatively new techniques for the treatment of pain caused by vertebral body compression fractures. Kyphoplasty differs from vertebroplasty in that a balloon is first inflated in the vertebral body to create a cavity into which cement is then injected under lower pressure.
I posted about my experience on Sep 15 on this thread. Here's a relevant bit about my first of two procedures.
I underwent the Osteocool ablation and kyphoplasty procedure on Sep 10. I can hardly find anything about the procedure in journals on the web, and certainly not on discussion boards. It's very new (last few years) and only a few hundred have gone through it. Pre procedure I was 7-9 pain most days. The procedure itself was torturous because I have very dense vertebrae (sclerotic) and, under twilight sedation, they hammered the needles with the radio-therapy tips into the vertebra, fried the tumor, and cemented the gap. They say, it's not normal for the procedure to be that terrible. (They tell me I was trying to climb off the table when they started hammering.)
This sounds horrible, right? They stopped the procedure halfway through the second of the four spots. After about 10 days I was moving more normally.
Despite trepidation, Sep 23 I had the second procedure to complete all 4 areas in T 3-5, and it couldn't have been more different. They put me much deeper under sedation (used an MD anesthesiologist), they brought in a representative (MD) from the company that sells Osteocool to do the ablation part, and they knew my back and what was going to be entailed. I woke up well, and within a couple days i was comfortably riding 2 hours for a followup appt with MO. It significantly reduced pain for last few months.
I would do it again without hesitation.
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Pearl-girl
My gosh that does sound horrific but I am glad you came out with positive results and drastically less pain. It will be interesting to speak to the docs about procedures and outcomes. I will ask to be knocked out so i cannot try to escape. I didn't know they could fry the tumor, maybe they can do the same if i qualify.
I will post about the process and results like you have and will definitely go back to where you posted on this thread. I like to know what I am walking into and this will help a great deal!Thank you so much ladies
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My vertebroplasties were done under anesthesia by an interventional radiologist. I decided these physicians got tired of looking at film all day so went for further training. Or, they really wanted to be surgeons but didn't like cutting people open…
Anyway, an IV was started however then a long delay occurred while we waited for a procedure room with imaging to open up. Apparently there was an emergency which needed priority. It was supposed to be outpatient but ran late so I stayed overnight.
The goals were to stabilize areas that had been compromised by tumor and fill space in order to avoid a fracture. A week prior, I felt a single sharp twinge mid-back telling me something was wrong (no ongoing pain). I had to wear a brace before and after.
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thank you vlnrph, I do remember waiting may times for rads in 2016 due to emergency zaps for others. I am sorry it didn't go smoothly for you, I hope it solved your twinge of pain or on going pain you must have felt after. I do hope for the back brace after because I tend to move with out thinking. Thank you for your response with you experience. I hope to at least get in to speak with these docs soon.
Tigre
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thanks Divine,
It seems I have the hardest time getting info from my onc. I did get these figures
Ca15-3 7/26/2021 was 134 then 1/24/2022 was 72
Circulating tumor DNA
6/23/21 was 25.70
12/1/21 it was 0.12I’m hoping this is positive , it is just that my thigh still hurts and is a constant reminder
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El_Tigre - I like doing things with my hands and find that they do give mental escapes. I am still working full time and usually don't have much energy in my minimal free time to work on my hobbies. I have often thought it would be fun to share projects we are working on with each other. My projects would look like a kindergartner did them most of the time but hey, it is all about the enjoyment and satisfaction.
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cowgal, Kindergartners do the best work!!
I picked an easy one so I thought lol We shall see I too have no energy until the weekend after FT work week.
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Just to cheer people a bit. My daughter is a nurse and does PIC lines she is in an oncology unit today, she has just sent me a txt saying she has met a patient who is 17 years with bone mets. I am well aware that does not happy to everyone but it does happen for some.
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Sunnidays - so encouraging! Thanks for sharing!
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Sunnidays - thank you for sharing. Those stories always give me hope. I also try follow a lot of the new research though I am not as well versed in it as Cure-ious is.
I am also trying to find hobbies I have energy for. I also still work, though only part time now. Most days that takes the energy I have. I'm looking forward to the warmer weather. My garden is not as extensive as it used to be but I'm trying to figure out now what I will plant and where.
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sunnidays, how nice of your daughter to be thoughtful like that and text you some inspiration! Thanks for sharing!
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