Bone Mets Thread
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I have a question for you ladies, I had my 1st Zometa Infusion last Wednesday, I started round fourth round yesterday. Today I feel achy, especially my bones and hip joint. I’ve never felt bone pain. Is this common? Do you think somehow Zometa does something that makes the chemo ‘soak’ in the bones more to make me feel it? I really don’t know much about bone Mets Since it’s only been seven weeks since I was diagnosed with liver Mets, then bone metS a couple weeks ago. But the pain is on the areas where they said they saw cancer. It’s just weird that the other three rounds I did, I didn’t have any side effects the first couple days besides some fatigue
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Hi, my 2 bone Mets (T1 and posterior 9th right rib) and 1 liver met resolved 4 years ago, with no Mets anywhere since. Since July I've sustained 6 fractures in 4 posterior ribs, including the original posterior 9th right rib. My oncologist ordered a DEXA, telling me she assumed my bones were paper thin. However it came back normal. I had no trauma, the first broke when I leaned forward in my recliner chair! The others were similarly sustained. The bone scan I had in Sept said there were 3 Mets, but the CT a week later said they were actually fractures. Four weeks later I had my first ever PET, and the low dose CT part said there were 4 fractures. When I compared the areas (from July to October) it worked out that there were 6 different fractures.
Has anyone else had anything similar or any idea how I can have non-traumatic fractures with normal bone density? I have never had bone strengtheners as I was scared of the side effects, but today I had my first prolia (denosomab). But it is only osteoporosis strength, which I will have 6 monthly. I am terrified I'm going to break more bones!
Also, does anyone know how long prolia (osteoporosis strength) initially takes to work? Thanks for any replies.
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Hi Bella, I think I can help you with my experience as I have a bone fracture, and used all bone strengthener medications: zometa, xgeva and recently Prolia. Prolia can be used for 10 years, every 6 months and should not take any holiday as it will increase risk of fracture. It is also suggested for women being in hormonal therapy for many years, See this study: https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30862-3/fulltext
I personally shocked when I found myself got injected with prolia, like you my bone density is within normal, and I have multiple active bone Mets in my spine. I prefer xgeva for bone Mets and bone strength. If you don’t have active bone lesions and at risk of bone fracture then you have more options. Make sure you take calcium and vitamin D daily with prolia, ask your doctor about the dosage. Prolia will stay in your body for 6 months, and the results show fast for those who have bone pain. I would also take a look at https://www.proliahcp.com/?gclid=EAIaIQobChMIy6zf5MC57AIV1x6tBh1TGQv1EAAYAiAAEgLPlPD_BwE&gclsrc=aw.ds
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i have a question for all, do you know any safe way to get back to xgeva from prolia?
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Do check with your MO about ANY supplements you should take. I'm off all supplements including calcium as my calcium level was elevated at the time of my diagnosis of mets. One symptom of mets is elevated calcium levels. I am taking Vitamin D and I take a Magnesium tablet morning and evening. Other than that, just Arimidex and Ibrance. I'm also getting a monthly infusion of Zometa.
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So I think I fractured my sacrum.... My cancer is there and back in July my scan showed a slight fracture there but I felt the same as I have since I got cancer there...no different...well today I bent down to go in the oven and WOW something happened...I couldn't put ANY weight on my left leg at all..now 2 hours later I can walk ok...but I cannot bend or lean left or hold anything in my left hand that has any weight. I am NOT going to the hospital bc I am told there is nothing they do for it anyway and I won't take pain meds bc of consitpation. I did leave a message for my MO. Looks like I will be going back on the Zometa now... (I only did 3 doses of that in Aug - Oct 2019.)
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Nicole,
Are you sure it's a fracture? Because you are talking about your additional weakness on your left side, is it possible that something is impinging upon your spinal cord? I have an osteophyte that's been next to my spinal cord for years. On all of my scans now, they talk about it pushing against my spinal cord. From time to time, if I do something (I never know what I did) I get leg weakness for a bit and sometimes other areas are messed up as well. One time I was at work and walking down the hall towards my office and it happened -- I literally had to hug the wall until I could get into my office. It eventually passed.
I don't have any solutions -- but perhaps there is something there that can be radiated? I don't know if they do that if it's so close to the spinal cord?
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No its definitely the sacrum... its the same spot my pain has been for 2 years just WORSE... I felt it as soon as I bent down. I should have been more clear I don't have weakness..but I can't lift anything with weight bc it causes me to lean and then I have the pain.
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I'm sorry you are in pain, Nicole. I was down 2 days this week with bone pain and it stinks!! I hope you find relief soon.
Since my MO recommended Ca supplementation, I did some research (I'm a registered dietitian so always research my supplements) and found this. Granted, it's from 2013 but still, a review from 16 studies. What do you guys think? I do want to point out that your body can only absorb 500mg at a time so space out your supplements. I see most come in a 600mg strength which never made sense to me.
Abstract
An unintended consequence of breast cancer therapies is an increased risk of osteoporosis due to accelerated bone loss. We conducted a systematic review of calcium and/or vitamin D (Ca ± D) supplementation trials for maintaining bone mineral density (BMD) in women with breast cancer using the "before–after" data from the Ca ± D supplemented comparison group of trials evaluating the effect of drugs such as bisphosphonates on BMD. Whether Ca ± D supplements increase BMD in women undergoing breast cancer therapy has never been tested against an unsupplemented control group. However, results from 16 trials indicate that the Ca ± D doses tested (500–1500 mg calcium; 200–1000 IU vitamin D) were inadequate to prevent BMD loss in these women. Cardiovascular disease is the main cause of mortality in women with breast cancer. Because calcium supplements may increase cardiovascular disease risk, future trials should evaluate the safety and efficacy of Ca ± D supplementation in women undergoing breast cancer therapy.
Gary G. Schwartz, Ph.D., M.P.H., Ph.D. is Associate Professor of Cancer Biology and Epidemiology and Prevention at Wake Forest School of Medicine. He has contributed to studies in basic science, epidemiology, and clinical trials in the area of calcium/vitamin D and cancer.
I'm going to continue searching for something more recent. I feel like us Stage IV ladies always get the short end of the stick!!
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Pamela23, I’m a little confused, so forgive me if this sounds stupid. Is this saying we should not take calcium and Vitamin D? I just started Zometa two months ago and was told by my oncologist to start taking a supplement. I have heart disease in my family. That would be the last thing I’d want to risk.
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Pamela23...let us know if you find anything else on this. That stinks! I agree with the short end too.
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Pamela - thanks for sharing the info you found. What I was told by my doctor was that the Xgeva depletes calcium so that's the purpose of taking the supplement. So, not to directly prevent bone loss but to prevent Hypocalcemia.
I don't know if Zometa acts the same way.
Here's an article on Denosumab induced Hypocalcemia.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4996783/
The prescribing sheet for Xgeva advises doctors to have patients take calcium
https://www.pi.amgen.com/~/media/amgen/repositorysites/pi-amgen-com/xgeva/xgeva_pi.pdf
Looks like the Zometa instructions say the same:
https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/021223s028lbl.pdf0 -
That's a great point Olma!! I think you are right, my MO said the same thing now that you mention it. It's to refill our blood calcium levels. This is why I threw it out there, to get a different perspective.
On kind of the same note, do you guys just do Ca & Vit D or does yours contain magnesium too?
Lastly, I had a nuclear bone scan to detect metastases, is there other modalities that give you more detail?
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Also, what warrants local treatment for bone mets? Is it common or is chemo more common?
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I take a Calcium/D3 softgel and I take magnesium separately, although the doctor didn’t advise me to take mag. I do it to possibly help with cardiac health as well as absorption and better sleep.
Nuclear bone scan is good, I’ve heard. But I get PET/CT because that’s what I started with and also my insurance says it is “ preferred “ for monitoring bone-only mets. Bone mets become sclerotic when they heal and I think a CT scan doesnt pick up the metabolic activity, it just sees the sclerotic lesions...so it can’t be determined if the cancer is active (I think)
but I think nuclear bone scans detect the metabolic activity like PET does? Not sure. I just felt better sticking with PET since we would be able to compare to the baseline scan
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Pamela23,
I think that a lot (most?) MOs use nuclear bone scans to look at the bones. That's been my experience. Recently, I had a spine MRI to get a different picture. In response to your second posting, that one was ordered by my radiation oncologist from my first diagnosis (2003) with whom I've kept in touch. I had asked her to take a look at my scans over the past year to tell me if there was anywhere in my bones that could be radiated -- I am a big believer in obliteration of mets if at all possible (thus, tomorrow I am having a local liver treatment to blast out a liver met).
What my RO told me is that she didn't see anything that could be radiated. I have diffuse mets in my spine and in my ribs, and she said that no one would radiate me all over. I have seen on BCO (and I'm sure others will respond as well) where if there were one or two mets, they've had them radiated. Other times I've seen folks who have had spots radiated because of pain, and I think that's fairly common.
Most MOs, as far as I know, believe in systemic treatment. It doesn't necessarily have to be chemo (I've been on Ibrance and fulvestrant for 14 months). I would just encourage you to seek out second opinions when you have questions or need more information about your particular treatment path.
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olma thanks for sharing the articles, really useful.
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I-beat-it, you’re most welcome, glad it helped 🙂
Pamela, agree withBevJen about local treatment. At diagnosis, I had numerous mets “Moderately Widespread” per scan report and MO said no local treatment would be offered unless I was in pain or had fractures. Which, I wasn’t and didn’t.
But...after I was NED and then had one active met to L1 show up on a scan...she suggested radiation. I had it done May 2019 and NED again since then.
It isn’t routine, but it is becoming more acceptable to treat bone mets with radiation when there is just one or a few (perhaps less than five, which is considered “oligometastatic”
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I guess that would explain why the RO said 'we can do more...' when I spoke to her after they did my sacrum. But I had no idea where my mets were and was still confused about the cancer thing. Now I've had a look at my scans, its really just three vertebrae that grew mets so I wonder if she meant those. They give me no pain and are healing, however, so I would prefer to hold off now. Radiation weakens the bone too.
Regarding calcium and the Xgeva - is that risk, alongside that of the ONJ, why some oncs are now starting to move to 3 monthlies rather than monthly?
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Olma May I ask which TX cleared your bone mets and brought you to NED? Very happy for you
hugs
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Hi Pamela,
Just thought i would chime in as well. My MO uses a combination of bone scans and CT but, in my case, CT is far more effective. My cancer is generally slower growing and as a result the bone scan always underrepresents the burden of disease I have.
In terms of local treatment, it’s unlikely to be recommended unless there are only one or two spots or if there is pain. I have extensive bony mets and have been treated several times with radiation to deal with pain and nerve issues. I’m actually expecting to get a call today or tomorrow to schedule a planning session for five rounds to my skull and c-spine as, unfortunately, they are misbehaving.
Generally, if you have many bony mets and they are not giving you any trouble there is little point to radiating them as there are probably more micromets that can’t be seen. And as Olga points out, radiation has its own risks and impacts. I’m pretty nervous about what lies ahead for me in terms of this round of treatments as the list of possible side effects is long and a bit scary...
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snooky, I am HER-2 positive, so it's Herceptin and Perjeta that is keeping everything under control, in addition to the six months of Taxol I had at the start of my treatment.
That's the standard first line treatmentfor HER2+ cancer and luckily I've responded well.
And thanks for the good wishes, hope you are doing okay xo
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Well Bone Metzers.... I had a slight fracture in my sacrum (where my cancer is) I found that out in July..but felt the same there as I always have...then Friday something happened when I bent over and I was in bad pain and couldn't put any weight on my left leg for a few hours...now I can walk etc...but still have pain when moving certain ways or sitting certain ways...so I got an Xray yesterday (bc all my scans are this Friday). anyway the X-ray results just hit the portal and said this:
Study Result
Impression
1. Evaluation of the sacrum limited due to overlying bowel gas and
stool. No identifiable acute fracture or dislocation. If there is
continued clinical concern for occult nondisplaced fracture, MRI could
be obtained to further evaluate.Narrative
HISTORY: Metastatic breast cancer. Evaluate for fracture.
COMPARISON: None.
FINDINGS:
Much of the sacrum is obscured by overlying bowel gas and stool on the
frontal projections. The joint spaces are within normal limits. No bony
erosions are detected. There are no soft tissue calcifications or
radiopaque foreign bodies.Does that mean they couldn't see anything because I had too much gas and poop in me??? WTHECK???
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NicoleRod, you and me both. My last two CTs have said that. The last one said obstipation. They couldn't see my colon. I had never heard of obstipation. I guess that's when the constipation is pretty bad. I am now taking my Miralax daily so it doesn't happen again. So frustrating when it keeps them from seeing what they need to. I'm sorry that happened.
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KBL...I never heard of that either...I take miralax just about everyday and magnesium supplements...ughhh its so annoying...and this chemo Erubulin makes me lean towards constipation....
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I’ve struggled with it for a long time as well, even before my diagnosis. Fun times. The weird thing is when you can’t tell you are. You think everything is fine at the time.
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Before they found the met in my hip I had an XRay that said that. My mets don't show up in xrays so it was read as normal with the caveat that I had a lot of stool and gas in the colon. I don't think it's uncommon, most people do unless they've been fasting for a period of time or taking bowel preps. I also think it's used as a CYA to some extent. Almost every image I've had taken uses some out like " looks like this but recommend X,Y, or Z if needed for further clarification."
The sacrum can be hard to image because of it's place near the pelvis. There can be a lot of overlap. One way we used to do it in nukes was to have the patient sit on the detector. It was called a TOD (literally "tail on detector"). It allows a view of the sacrum looking up through the pelvis instead of over it. I'm not sure if they can do that on xrays or not but for a bone scan of that area it used to be used.
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My latest MRI just posted to the portal and from what I understand it sounds like good news. My tumors are stable and haven't grown and there were no new tumors seen. I have some mild to moderate disc bulges throughout the lumbar spine but no compression fractures. L4 has something that looks like a possible met but is more likely something called a Schmorl's node. I'll have to look that one up. Anyway, I'm relieved. My back still hurts quite a bit but I have an active job and spent a lot of years beating it up on horseback so I guess degenerative changes are to be expected at this point. I'm actually doing pretty well with heating pads and stretching. I made it to the gym and swam a bit yesterday. That helped. I'm taking this as a win!
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Great news, emac!
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