Bone Mets Thread
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Hi there! Some of you will recognize me from other threads. At the risk of being that person, not-diagnosed-but-worried, can I just ask for your take on my current situation? I was diagnosed with liver mets 6 1/2 years ago and have been living the stage iv life. This week, about an hour after my Faslodex injections, I started having pain in my lower back/tailbone area. The question in my mind is whether this is simply my muscles resenting the assault (shot given too low? Did not walk and apply warm packs soon enough? Too much exercise a couple days before?) — or possibly a bone met irritated by swelling after the shots. If I move the wrong way, particularly rising from a seated position, leaning forward, or bending over without taking the weight on my arms, it makes me yelp. In all my years of scans there have been only a couple mentions of a sclerotic lesion (Pubic bone, acetabulum), then no further mention. I do know that ILC bone mets tend to show as sclerotic. I suppose I just take ibuprofen as advised and see if next month's scan shows anything? I get PET-CT and CT with contrast, but could request bone scan or MRI. This kind of pain that is not there when still but really hurts with certain movements — does it sound like bone mets or not?
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Shetland, what you describe is not like the kind of pain I have experienced with widespread bone mets. When I have an active met that is painful, a change in position does not alter the pain. It is a deep, constant, boring-in sort of pain. Rest or sitting does not relieve it.
You mention the possibility of a bone met getting annoyed by local swelling from the shot. Interesting theory. I would imagine, though, that a bone met that sensitive would most likely be causing you pain all the time.
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Thank you, lulubee. That is just the sort of information I was looking for.
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Wow, Shetland, I hope you get some answers. I would "hope" that your pain is related to your injection. My hip hurt pretty much all the time for about six months before my bone mets diagnosis.
I'm glad your next scans aren't too far off. Would your MO add a bone scan to your other tests?
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Shetland, I have bone mets from top to bottom of my spine. The only thing that saw them was an MRI. CT and PET show no cancer for me. My many lesions are all under 1 cm. I have pain but have had widespread back pain since my 2013 car accident. It’s not bad enough for me to need anything other than Tylenol once in a while. I’m very fortunate they have not caused a greater amount of pain to this point. Since my diagnosis was missed multiple times from 2013-2019, I had still been going to the gym and lifting weights and hoping the pain would die down. I haven’t had an MRI of my hips or ribs but suspect they’re there too because of the pain. I would ask for peace of mind for whatever test you want. I asked for an MRI this year to see if what they’ve seen since 2013 was any worse. I had significant progression and finally found out after bone biopsy what it had been the whole time. I’m pretty sure you’ve seen my story.
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After my last post stating doctor said No chemo for treatment I've had other pathology tests come back that now state I am also Her2 positive. So current status is metastatic IDC to the Bone ER+PR+her2+
MO now wants to do chemo. Plan is to stop my estrogen and ovaries with Zolodex and faslodex tomorrow. Get a port placed but before get a echo.. Then start herceptin, perjeta and low dose 60mg taxotere every 3 weeks for 3 months. Then a full body scan.
My question is this.. Do any of you take this low does of taxotere(60mg) and have kept your hair? MO claims this low dose of chemo will not make me loose my hair. I am questioning this..
I've lost my hair once before 8 years ago with my 1st bought and am not to stressed about it.. my thoughts are just this.. I'm hoping she isnt giving false hope when she knows it will be falling out..
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can’t answer because I had weekly taxol and did lose my hair but hopefully someone else will know
Good luck starting your TH&P wish you the bes
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After my second go with tax, I lost my hair and it never came back, BUT my doc said I'm only the second patient he's ever had that happen to (figures)
Tip: Zoladex hurts, I put the prescribed numbing cream on the spot on my belly, about an hour beforehand and it helps a lot! Just an FYI
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interesting article from National Cancer Institute about radiation for bone mets
https://www.cancer.gov/news-events/cancer-currents...
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BevJen, interesting article. I have diffuse spine mets from C-6 to T-12, so nothing is going to help!
I guess this is great news for people who have pinpoint pain and only a few tumors on their spine.
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S3K5,
Yes, I seem to have a lot of spine mets, plus tons of degenerative disease, in my spine, too. I had a full spine MRI this summer to try and pinpoint what was what, and I'm not totally sure that they sorted it all out. I, for one, wonder if the degenerative disease wasn't brought on by being on letrozole from 2006-2019, at least in part. But what the heck do I know?
In other interesting findings, for whatever reason, I was researching the other day about mets in the iliac crest and I found an article that says that cryotherapy is being used to help with that, and that it may even be a better therapy than radiation in preventing fractures and relieving pain. I was surprised to read that, because I hadn't seen anything before about that use of cryotherapy.
But, like you, I suspect that they will only use a therapy on me in case of pain in a particular area.
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Hi again!
oligo metastases! any info greatly appreciated!
Solitary tumor found on sacrum-
and GO!!!
Thanks kindly! x
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Good timing with the article BevJen. Thanks. I see my MO tomorrow and only have 1 spine met. I wonder if this is a possibility for me if my next PET continues to show progression. All other mets are diminishing so it would be nice to be able to zap T11 if it continues to glow on my scan.
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thanks for the zoladax tip. I just had my second injection today. Ouch how it hurts and bleeds a pretty decent amount. They do put this numbing spray on. But it still hurts. Especially when you hardly have any belly fat like me.
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yes!! That zolodex needle was big... my initial thought was why does the needle have to be that big? The nurse used the numbing spray it worked wonders.. I could still feel the pressure of it pulling out but didnt hurt going in.
Bigpeaches: my MO only wants to start me at 30mg and do every 3 weeks for 3 months.. she things my hair should stay? I'm prepping for it to go.. just incase! I had taxol last time so taxotere is next on the list but that was 8 years ago
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Yeah, in the UK we don't get a numbing spray its just "sharp prick..." I've heard some of the nurses, especially if they are new to that shot, do a sharp intake of breath when they first put it in the skin. If they are really good at it Ive had shots where you don't feel a thing. Unfortunately last month she was either new or it was the way I was positioned and that was probably the most uncomfortable one I've had yet.
C&M - would be helpful if you posted up your diagnosis and any other therapies you have had (i.e were you early stage and had surgery and are now stage IV, etc) and your hormone profile so folks can help you out a bit easier.
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hi everyone
I’ve been diagnosed with bone met of r femur 2 yrs ago. I have been putting of getting Zometa infusion due to fear of jaw necrosis. I’m doing well and my scans keep say Ned. I am wondering if anyone here has chosen not to take Zometa and if so how’s it going?? Also if anyone knows the percentage of help it makes on fighting bone mets? I’m hoping to hear successful stories of people choosing not to take this....how to hear from someone soon😍
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From Medline: "Zoledronic acid (Zometa) is not cancer chemotherapy, and it will not slow or stop the spread of cancer. However, it can be used to treat bone disease in patients who have cancer. Zoledronic acid is in a class of medications called bisphosphonates."
From what I know, it is used to strengthen the bones. I get Xgeva instead of Zometa but it is the same purpose, different mode of action. Xgeva is an antibody given monthly, every 3 months or every 6 months depending on each person's situation. In my case, I get it every month since I have bone mets in almost every vertebrae in spine. Osteonecrosis of the jaw is a risk when an invasive dental procedure is done. I have been on Xgeva for 7 years now and so far so good.
Since you have a single met on the femur and the scans look good, the risk of fracture may be low. Maybe you could talk to your oncologist and get her opinion?
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Motherofmany - I have mets in hip, T11, sacral area and femur. My femur had a rather large met so I had to have a rod inserted and we also zapped the femur met with radiation to help with pain management. This all happened last March/April. I also had my first dose of Zometa in March. In October, my orthopedic oncologist compared my femur X-ray from May and October. He noted how nicely my femur was being rebuilt by the Zometa. It really was quite a remarkable change.
Good luck to you.
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Hi Motherofmany,
While Zometa is not chemotherapy, there is some evidence that it (and other bisphosphonates) do help to reduce the spread of bone metastasis. The information below is from my cancer agency's literature:
Zoledronic acid is a third generation, nitrogen containing bisphosphonate that inhibits bone resorption. It binds to hydroxyapatite crystals of the bone where it accumulates and is stored as an inactive drug. Zoledronic acid can persist for years in mineralized bone until it is released into systemic circulation once bone resorption occurs. When ingested by osteoclasts, it inhibits osteoclastic formation, recruitment, activity, and induces osteoclast apoptosis. In preclinical models, zoledronic acid prevents tumour adhesion to the bone, induces tumour cell apoptosis, and inhibits angiogenesis. Zoledronic acid is structurally similar to pamidronate, but is 100-850 times more potent and is associated with higher binding affinity to bone and higher antiresorptive potential.
I was on pamidronate for two years but stopped due to elevated creatinine levels (related to Verzenio, not pamidronate). I did ask my MO if I should go back on and he said not at the moment, that the pamidronate stays in your bones for considerable time. However, he did indicate that if things start to progress in the bones again he will likely put me on Zometa.
I was also concerned about ONJ but understand the risk is very low. Given that you have limited bone mets and you appear to be stable, I think it's a strong argument for a "wait and see" approach. You can always consider adding it into the mix if things change.
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Here is a thread on oligo for you, CandM
https://community.breastcancer.org/forum/8/topics/786652?page=11
Thanks for your comments, KBL and Sunshine. A week past the shots I am almost back to normal.
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Hi all. Haven’t posted here in a while. I just saw on my records where “bc mets to liver/other” was posted. Is this normal to go on your record before you are actually told? If so, what should I expect? I do have a lot of bone pain.
I wish everyone a very Happy Thanksgiving!
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Hi, TNMTNGAL,
Looking at your profile, you don't even have any mets listed? So no, I would say that that notation shouldn't have gone on your record without you hearing about it first. However, as we all know, these things happen and sometimes the docs or the NPs don't even realize that they are doing such. If it was gone mets I would have thought that would have just listed that? Maybe someone else can weigh in here.
In any event, there is also a liver mets thread if your doc tells you that it also involves the liver. What treatment are you currently on? I see "targeted" in your profile, but I don't know what you mean by that.
Good luck with figuring this out. When do you see your doc again? I would try to get in to see him/her sooner rather than later, find out the basis for that notation (did you recently have a scan?), see if you can get anything biopsied before treatment decisions are made, and perhaps even get a second opinion.
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TMNTNGAL- I have seen you post before-- I remember the screen name. I was thinking you were Stage 4 already. Did you have a recent scan? Do you have appt with MO soon? Where did you see that noted? With the Holiday and most places closed until Monday I am sorry if you are going to have to sit on this till then. Can you call your MO now? Tell them you saw the notation and you would go crazy to wait till Monday.
Let us know what you find out.
Once you know more, we can advise better. Biopsy planned? Hormone receptor status? Plan for treatments? Size of mets? How many? Etc.
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Thank you and everyone who responded to my Zometa question. I will definitely consider going forth on my next H&P infusion.
Bless you all and happy turkey day❤️
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Motherofmany...I denied Zometa/Xgeva...also because of Jaw Necrosis and other reasons of what it can do long term... I did NOT find enough of any thing showing it makes a difference at all with bone mets...
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Motherofmany,
I would suggest that you google Dr. Adam Brufsky, who is at the University of Pittsburgh. He has spoken and written on many occasions about what he sees are the benefits of these types of treatments for helping to avoid "skeletal events" that can make the life of a Stage 4 patient pretty miserable. He is a huge proponent of both of these drugs. After reading some information from him (and look at the more contemporary information) you should be better armed to make your own decision on this.
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Motherofmany- To BevJen’s point, you may find this YouTube interesting. He speaks fast and if you find he gets too technical in the beginning, don’t stop watching. Hang in there. Lots of great info.
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I have widespread mets to bone and some lymph nodes in my chest. All was stable on scans on 11/25 except mild progression in L2 and left sacrum. L2 met went from .8cm to 1.3cm. I do have some increased pain these areas. We are staying with I/L for now.
I guess I am wondering at what pain level would you consider radiation? You can only have it once in an area, right? Should I wait or jump at the chance since the pain is not limiting or unbearable? It does mildly impact my sleep.
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