Bone Mets Thread
Comments
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Just chiming in. My onc did monthly Xgeva for the first year, then changed to every 3 month Xgeva. I don't know about the efficiency of this. She just said that is the way to do it.
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Believe me, I can FEEL the difference after I have my 12-wk Zometa (been on it since 2016) infusions. . . my spine and my hips don't hurt as much, so I know it must be doing SOMETHING
For those of you who want to know, Zometa IS a chemo drug that is used to treat bone cancers, and that's why you sometimes feel like crap after getting the infusions. My MO tells me to take an antihistamine 1 hr b4 every infusion.
I do have some sensitivity to cold things, but other than that, I'm fine.
L
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Thank You Lita for the info. I was on Xgeva for 5mos but had progression in the bones. ONC switched me to Zometa. Hope it works better for me.
S
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Lita, with all due respect, everything I've ever I read about zometa states is that it is not a chemo drug but can be used in conjunction with chemo. It is in a class of medicines called biophosphenates.
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Thanks for the comments ; will keep an eye out for new clinical data on Xgeva dosed every 12 weeks compared to every 4 weeks. They must be coming up.
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Just to clarify further, as divine points out, Zometa/zolendronic acid is not a chemo drug - it doesn't kill cells. In fact, another version of it, sold under the brand name Reclast, is used to treat osteoporosis. Those agents are in the bisphosphonate class which includes oral meds such as weekly Fosamax=alendronate and monthly Boniva.
On the other hand, as a monoclonal antibody which acts as a RANK ligand inhibitor, denosumab is different. It is provided as Xgeva as well as Prolia (used twice a year) to strengthen bones. Actress Blythe Danner, Gwyneth Paltrow's mom, served as spokesperson for the latter in ads.
For cancer, the more potent formulas of both are given IV every month initially. Caution is required prior to any invasive dental work. Ingest calcium, do some weight bearing exercise and be sure your vitamin D level is good.
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Then why does it tear your bones down (compromise your jaw...) if you take too much of it? Can you send me the links that say it's NOT a cancer fighting drug? I'm going to have to search my files and see if I can still find my notes.
Unfortunately, with my brain mets, I don't see very well anymore, so it will take some time. BTW, it was over 3 yrs ago that I found the info on the i'net. Of course, maybe at a STRONGER dosage it works like a cancer drug. Interestingly, it builds bone up, but it can also tear them down (e.g. osteonecrosis of the jaw, etc.). But hey, if thinking it's a cancer drug turns on the "placebo effect" and makes me feel better, I'm all for that.
L
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Here’s one link about Zometa. In the first big paragraph, you will see where it specifically states Zometa is not a chemo drug. I copied that paragraph and included it below the link and italicized the statement it makes about not being chemo. If you click on the link, you will see it is the same paragraph, nothing added or deleted.
https://medlineplus.gov/druginfo/meds/a605023.html
Why is this medication prescribed?
Zoledronic acid (Reclast) is used to prevent or treat osteoporosis (condition in which the bones become thin and weak and break easily) in women who have undergone menopause ('change of life,' end of regular menstrual periods). Zoledronic acid (Reclast) is also used to treat osteoporosis in men, and to prevent or treat osteoporosis in men and women who are taking glucocorticoids (a type of corticosteroid medication that may cause osteoporosis). Zoledronic acid (Reclast) is also used to treat Paget's disease of bone (a condition in which the bones are soft and weak and may be deformed, painful, or easily broken). Zoledronic acid (Zometa) is used to treat high levels of calcium in the blood that may be caused by certain types of cancer. Zoledronic acid (Zometa) is also used along with cancer chemotherapy to treat bone damage caused by multiple myeloma [cancer that begins in the plasma cells (white blood cells that produce substances needed to fight infection)] or by cancer that began in another part of the body but has spread to the bones.
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. It works by slowing bone breakdown, increasing bone density (thickness), and decreasing the amount of calcium released from the bones into the blood.
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I thought I'd post this inquiry on this thread as I have searched other threads and have not found any info that really addresses what I'm looking for.
I am looking for information on others experiences using topical CBD/THC creams for pain control. I'm not interested in smoking any THC products (never been a smoker of ANYTHING, and don't plan to start now!), or getting high. Just looking for something that might help with pain I have in my spine (bone mets and other damage), as opioids do virtually nothing for me except make me constipated!
If you use these topical products, what ratio is the CBD to THC in them or are they all one or the other? Do you use it daily and what kind of relief do you get? Do you think using Lidocaine patches would yield an equal result?
Thanks in advance!
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Hi Wallaby, I don't use the CBD/THC creams, but have thought about it, too. Maybe Lita will chime in as I'm pretty sure she uses them.
After a year on Xgeva, I'll be changing to every 3 mos. on Aug. 1. Originally I was on Zometa and I have good teeth, but I think my onc switched me to Xgeva just in case my luck runs out and I'd need dental work bc of my advancing age. I don't think she ever really answered why, but I should ask her again.
Lita, I swear my Onc said when I started Zometa that it was to strenghten my bones from the AI, but she had also seen it keep bone mets at bay. So maybe while not actually a chemo drug, it does slow cancer cells from doing their dirty work. There may be real effect, but if it's placebo, hey I agree, whatever works!
Divine, very sorry to hear of your progression; you've had a good long run. I doubt lessening the Zometa tx was a culprit and as you said, more likely that Arimidex ran its course. Best wishes for success on Letrozole/Ibrance pushing it back.
Hugs to all.
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Hi Wallaby, I have used CBD/THC topical oil. My MO recommended it but my pain specialist didn't think it would help at all in my case, since I didn't have nerve pain. My bone mets pain is deep, radiating to my shoulders and lower back. I used it for about a month (followed the instructions) but it didn't do anything for my pain. I am sure there are others with bone mets who have had better success with this than me. I guess, it also depends on how many metastatic spots you have on the bones and where they are located. Mine are numerous on the spine (Cervical to Lumbar - all over the place!) so I am not surprised the CBD/THC oil didn't work for me!
I had a good consultant at the clinic where they sold medical marijuana and most of the stuff they had was for smoking, or powdered leaves for inhalation. I was not interested in smoking, so I purchased the topical oil.
It doesn't hurt to try - the clinic will have a brochure with various types of oils and the ratio of CBD to THC depending on the therapy. The consultant will also help you choose. You could look up online to see which clinic has the oils and which ones sell only leaves. In NJ, I didn't have a lot of choice! But in your city, it may be better.
Good luck - hopefully it works for you and you don't have to take any pain meds. Keep us posted if you try.
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Here's what I found regarding Zometa…
"Zometa is used to treat high blood levels of calcium caused by cancer (also called hypercalcemia of malignancy). Zometa also TREATS multiple myeloma (a type of bone marrow cancer) or bone cancer that has spread from elsewhere in the body."
https://www.drugs.com/zometa.html (link where I got the info for the above...)
"Uses: This medication is used to treat high blood calcium levels (hypercalcemia) that may occur with cancer. Zoledronic acid is also used with cancer chemotherapy to treat bone problems that may occur with multiple myeloma and other types of cancer(such as breast, lung) that have spread to the bones."
Sounds like a "You say potatoes, I say potahtoes" situation to me. I really don't care if it was originally used as a chemo drug or not...just sharing the info
and glad it's working for people.Many thanks to everyone contributing to the discussion and sharing. I think we can put it to bed now
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It’s important to me that this forum presents accurate information. No one disputes the fact that zometa works along with chemo but I would not be comfortable going along with the idea that it’s a chemo drug when it isn’t. Anti-estrogen medicine also treats breast cancer, as do aromatase inhibitors, but they, too, are not considered chemo drugs.0
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Hi all - I finished first treatments for stage 2 idc in June 2017, had 1 zometa infusion in September, dx with stage 4 end of November 2017, confirmed January 2018 and been on every 12 weeks xgeva shots since February 2018. So far no progression and I have ct and nuclear bone scans every 12 weeks as well, next ones July 3. I would like to know what the studies show on monthly versus quarterly xgeva..I am currently in a clinical trial for SBRT for ogliometastatic mbc, otherwise my own MO says he would be comfortable with every 4 month scans, which I think will be okay; trial will be done in January, so we will see then. Stay strong and informed!
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Divine - One of things I really appreciate here is accurate, credible info. I am in several Facebook MBC support groups and they are all over the place re credibility...sometimes I speak up and sometimes I am too exhausted from what people write and what they believe and I just sign off.
My favorite so far is a metster who is on a protocol utilizing feline anti-hair ball granules to treat her MBC...
Gumdoctor
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Gumdoctor, I can only imagine the things mentioned on that FB page. Anti hairball granules How did she even come up with that? But the internet draws out the good as well as the bizarre.0
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Divine,
This woman claims it is a "real thing" that she got somewhere on the internet. I silently shake my head alot. It is possible there are things out there that will make a difference. I am smart enough to know my classical medical model training from Washington University and 2 other universities did not include everything there is to know in the world. I have to be respectful of people doing whatever it is they think they need to do with this horrible disease.
I also learned a hard lesson through dealing with an Army colleague with stage 3 colon cancer, not everyone wants/needs to know everything about their cancer like I do. The Army referred him to a new cancer center 30 min from where we were stationed. I insisted he go to Washington University, 2 hrs away. They made that switch and that's where he received treatment. Then I offered to help him navigate all the information he needed to learn about his cancer. No Thanks...I don't need to know any of that...my treatment is done and I don't have cancer anymore
I was absolutely stunned. This guy was completely comfortable, and still is, in Ignorance-Is-Bliss-Land.
Some of the thousands of people in the MBC FB support groups are like that too.
I question why I am even in there but I find I can drop a supporting note here and there, and a tidbit of factual info once in awhile. I have seen a handful of topics I want to learn more about and that has been useful. For me it is really a take it or leave it experience.
Sorry I see I am rambling now.
Have a great day - Gumdoctor
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Gumdoctor, yes, it can be worth navigating a Fb group like that to learn a few new things and share knowledge that helps others, even if there is some or a lot of so called information that doesn’t seem to be grounded in reality and needs filtered out.
It’s also true that not everyone wants to know about their cancer diagnosis in depth. Sometimes when I deal with medical personnel other than at the cancer center, they’ll be asking me questions and are surprised I know so much about the meds I take, the doses, what they’re prescribed for, etc. I often find myself informing them about cancer treatments and how they work.0 -
For lumbar pain then CBD/THC Oil can be put in clear capsules and used as suppositories...more effective than topical application....you can also take a couple of drops under your tongue...
Start with lower doses and try it for first few times when there is someone else at home with you and do it at night first....
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Did anyone else develop scoliosis from their bone mets? I always forget to ask this. I think I may have had a very mild scoliosis prior to MBC but it seems that when the cancer spread in my body my spine became very distorted. I work on it with yoga and it is a little better but I'm curious if anyone else has had this problem.
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Thanks Bliss58, S3K5, and Lilly55 for your input. I'm going to investigate it and likely will give it a try. Nothing to lose here!
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Could you all clear this up for me? Can bone mets ever shrink away completely - as in not showing on bone scans or mri? Or will they show as a scar? What about if they received radiation? Everyones scan reports confuse me a bit. My scans are coming up. I'm going twice a yr now. I guess I'm in dream land hoping it could disappear even if cells lurk deep in the bone to haunt me later. Yep I have one met.
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gailmary - I am in the Standard Arm of a clinical trial for high dose radiation on ogliometastatic bc (I have only 1 met on my iliac crest). I asked the RO if the met would disappear and she said no, the bone will always show something, whether healing, scarring or ?? (I did not really get it).
I look forward to hearing others' responses...
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gailmary and janky - when I was first diagnosed via PET/CT the report mentioned several areas of bone with high metabolic activity in addition to 3 vertebrae. On SSubsequent scan reports after I started treatment, only the spine mets have ever been mentioned and their appearance has been described as "consistent with healing". Only one tumor on my spine was ever biopsied.
A few months ago I asked my onc why the non spinal areas were not mentioned on subsequent reports. Her answer was that it could be that the scarring in those areas just isnt showing up on PET but might show up on a bone scan. (which I have not had)
I dont know if those other spots were maybe due to inflammation and were never cancer or if they were so small that the healing isnt apparent on PET like my onc said. But if they were mets they have virtually disappeared as far as the PET/CT is concerned.
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Olma61 - I have a nuclear bone scan & contrast ct scan every 3 months, never a PET or mri. I seem to remember that my met shows up as 'consistent with healing', but still shows as a 'blip' on the scans. I go July 3, so will be asking again for clarification.
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Question for you all. I have documented bone mets in the spine- osseous in the cervical spine, and sclerotic/osseous in the thoracic and lumbar spine. My MO concentrates on the liver mets more and we do CT's of the chest, abdomen, and pelvis every 3 months. The radiologist reads the CT's as "no change in the osseous or sclerotic (some radiologists will state one word, some the other) lesions …." I also have rheumatoid arthritis. I have pain directly in the spine that comes and goes. I can pinpoint the areas on my spine that hurts. Like, I can actually touch the areas to point them out. It is a deep pain. We will probably never know if the pain is arthritic or cancer in nature, and maybe it doesn't really matter. But can "stable" bone mets hurt??? Or could the bone mets be progressing?? Like I said, my onc is more concerned with progression in the liver or a new site for progression of the cancer, but could the bone aspect be getting worse??? How do you all with more than bone-only mets determine if there is progression in the bone but maybe not in your other areas?? Can the cancer do that--worsen in one area and the others stay ok?
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Candy, Does taking analgesics and anti-inflammatory meds help with the pain?
I have degenerative arthritis in my spine, bulging discs, and old compression fractures AS WELL as CANCER all up and down the cervical, thoracic, lumbar and sacrum areas. So, it's kind of hard for me to tell WHAT is actually causing the pain. I have adjacent muscle pain too because the muscles have to compensate for my weakened, deteriorating spine. I use thermal patches, massage in the LA-Z-BOY and topical CBD ointments and creams. Pain pills don't do too much for me.
It's tough because sometimes I can barely hoist myself out of the chair and walk. When it gets really bad (and it will) my palliative care dr is going to put me on the heavy duty stuff. Not looking forward to that
(.Hope things get better for you,
L
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Lita- To tell the truth I don't use pain meds much. Tylenol Arthritis 8 hour sometimes. Other wise I just deal with it. I hurt all the time anyway so I am used to it. Just wondering if the cancer is causing the spine pain. You know, when we hurt we tend to think the cancer is getting worse. But kind of putting 2 and 2 together---cancer in spine and spine hurts at times. Must be the cancer. Seems logical to me.
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Hi Candy,
I have had similar questions. While my bone scans and CT scans have been consistently reported as stable, I have had periods of increasing pain in regions with mets. Each time I was given a shot of radiation which helped tremendously (an indication that it was the mets and not other arthritic issues). I've received radiation to the lumbar spine, hip and sacrum. In the case of my right hip it wasn't 100% successful but beat it back to the point where I generally only have pain if I am on my feet a lot.
Hope you can get some relief.
Pat
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Sadiesservant- Thanks for the imput. I do think it is the cancer. Duh, hurts in the areas of known cancer. My MO has never even mentioned radiation as a possibility. I like my MO, but I tend to have to bring up things to her. You know, I have to initiate the conversation. So if I wanted to look into the radiation possibility I will have to start the conversation. Otherwise we continue on using Tylenol and just keep on keeping on. Just wonder if the cancer is worsening.
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