Bone Mets Thread
Comments
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Well that sucks. I'm sorry you're back here again! Do you have a date for the PET and first oncologist appointment yet? I was first treated in 2017 and the treatment landscape has changed significantly. My first line of treatment didn't even exist back then. If you're feeling overwhelmed, that's normal! Things will calm down after you get all these initial scans and appointments out of the way and they get you started on treatment.
If it's not already planned, it would be good to have your cancer tested for mutations. Not the genetic ones like BRCA, but the tumor itself. My cancer has the PIK3 mutation which has a new treatment called Piqray that targets that specifically. I wouldn't have known about it if my oncologist hadn't sent my sample in for testing. I didn't even know that was a thing I should ask about. She just did it!0 -
Apologies for the slow response to those with questions. I’ve found BCO has changed so much. I used to visit multiple times per day and now can go for a week or more without logging in.
Divine, I understand how confusing the types of bone mets and terminology can be. I’ve had more than one conversation on the forum with folks that don’t quite understand the subtleties of sclerotic mets. First, to answer your question, sclerotic mets, osteoblastic mets and blastic mets are all the same thing. They are terms used to describe the process of bone laying down new bone to attempt to “heal” the injury from the cancer. Here is a description I found: “ Sometimes, the cancer cells release substances that turn on osteoblasts. This leads to new bone being made without breaking down the old bone first. This makes areas of the bone harder, a condition called sclerosis. The areas of bone where this occurs are called osteoblastic or blastic lesions.” The other type of bone lesion is lytic or osteolytic which, as you note, is when bone is eaten away. In many cases, the appearance of sclerotic mets is good news as it can occur as a result of the treatment doing it’s job, reversing the damage to the bones. However, that is not always the case. As I mentioned, I only have sclerotic mets - I think it’s a function of my slower growing disease - so an increased number of bone Mets in my case is probably a sign of progression.
As to the term zap, that’s just my shorthand way to describe the treatment. I liken radiation treatments to be zapped by a ray gun. 😊 But all my treatments have been SBRT. Oh, and all have been in response to pain and other neurological symptoms. In the absence of symptoms it’s unlikely that radiation would be recommended unless a patient is considered oligometastatic. There isn’t evidence of benefit from local treatment when the cancer is wider spread and there are risks of negative impacts from the treatment. The focus for those of us with multiple mets should be on systemic treatment that hopefully beats back the cancer regardless of the location.
I hope I caught everyone’s question. Feel free to PM me if I’ve missed something.
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Sadie, thanks for the explanation on the bone mets. I think I understand it better now and appreciate the details you provided.
I had the radiation to my thigh on Tuesday. I was happy and surprised to get in so fast as I’d been told it could take up to two weeks. The thigh was sore later in the day and I felt out of sorts so I took it easy. The next day the leg felt a little better. I just had to go for the one zap. I’m hopeful it will help. I won’t scan until after the new year tho I’ll see the onc for an appt or two and I have a phone appt with the radiologist in a month.
Thanks to all for keeping me company through this process. Even tho it was just the one radiation treatment, it really helps having an idea of what to expect from others who’ve already gone through it.
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Divine - My understanding is that sclerotic (blastic) mets are dangerous because they makes the bone hard and brittle and subject to fracture, even though it seems good that the bone tries to heal itself.
As to peoy’s question about pain from bone mets, I’ve yet to experience any pain from mine. My knee and my right hip bother me at times but my scans dont show any lesions there (knee would be an usual place to have a bone met anyway) so it must be aging or osteoarthritis My mets are mostly in my spine, I did have one in my rib and my scapula but those are no longer mentioned on my scan reports for some reason
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I did have pain associated with the cancer in my clavicle. The radiation did help alleviate that. I was considered to be possibly oligmetastic (there is no test to know for sure but there are things that make it a possibility). My radiation oncologist strongly felt I was oligmetastic and treated me with the intent to "cure". She said that my treatment was completely different then what she would normally do for a stage 4 breast cancer patient.
My radiation oncologist told me that cancer killed by radiation doesn't happen until the cancer cell tries to divide. Therefore, if you were to scan soon after doing radiation, you would probably not see the full benefit of what your radiation treatment did and a faster growing cancer would try to divide faster than a slow growing cancer so it would take longer to see the benefit in the slower growing cancer.
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May I ask for those getting Zometa, how often do you get it. I started Zometa two weeks ago and the plan is to have it once a month for 2 years. My 2nd opinion doctor said he would recommend 1 every 3 months.
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Anx789 I am given Zometa infusion once a month and I think it will be for two years.
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I'm scheduled for every 3 months.
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I did it once a month for a year. Now I'm switching to once every three months.0
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anx789
I started out getting Zometa infusion every three months and after 3 years will now start getting it every 6 months.
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I find it interesting there lacks an established protocol for Zometa and Xgeva. In July I was switched to Xgeva every 6 months. I asked my MO why the change, she feels the potential side effects is not warranted in my situation, the bone met is stable or unchanged. Plus, MO mentioned the focus has shifted on bisphosphonates/Xgeva. "This was all you heard at conferences and now it's not the "buzz" anymore".
Thus far I haven't noticed side effects going off Xgeva, it's 5 months. Hopefully, the reduction of Xgeva was the right decision.
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I, too, started Zometa every month. It was on the same day as I saw my MO. At the two-year mark of my MBC diagnosis, I went to seeing my MO every three months and getting my Zometa infusions on that schedule. It was a little scary going from monthly to three months, but I seem to be doing well. Next appointment is in December.
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Hi there! I'm new to this thread, I do not have cancer, but unfortunately my mom does. She is stage 4 brca2+ (that's all me know at the moment, but she has been treated for er/pr+ her- negative since 2017) In 2019 she started taking ibrance and fulvestrant for 3 years since we discovered she had a single met on her spine, she also went through radio surgery.
On September she had a bone scan and it showed progression to her pelvis, spine and rib. Therefore, her doctor advised her to get a new biopsy, and she did.
However the results came back negative for cancer. The oncologist says that the surgeon must have taken some tissue from an area that doesn’t have cancer, and that a second biopsy is not possible since she is getting those areas irradiated. He is 100% sure she has new mets.
Has this ever happened to any of you?
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tinkerbell- I too am on Xgeva. I was getting it monthly for the first year, then changed to every 3 months. Now, I am 5 years into this, and my MO said to change to every 6 months. To prevent side effects of brittle bone and ONJ. I am fine with that. I have read that Xgeva stays in the body for a long time. I don't want to do more damage by using it for so long. And I hope I live several more years. Maybe someday stop the Xgeva altogether???
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anx789 - I get Zometa every 3 months. Since starting in March 2020 I’ve seen 3 oncologists and all were ok with this schedule. I have extensive bone mets. Actually just last Thursday I started seeing my 4th MO (because I’m starting a clinical trial) and she will continue the every 3 month dosage. I actually have a reminder set for this coming March to discuss with my oncologistthe benefits vs the risks of staying on Zometa after 3 years.
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I was on Zometa every 3 months for about 4 years- then my MO said to stop it for awhile as it stays in your body a very long time and after this many years the side effects can outweigh the benefits. seems like it was a hot topic last year- don't know if anything has changed and if I will every restart it.
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I have been on XGEVA for a little over three years. I asked my MO at my appointment a couple of weeks ago some questions about XGEVA. My mets were one lymph node and my collarbone. I know on the bone and CT scans that the collarbone damaged area always shows up. I asked him if that bone would ever be healed. He told me that he felt that it had healed. I asked him why I stayed on XGEVA if it has healed and asked if I stayed on it for any other protective reasons. He said that at the point I was at, he would have considered dropping me to getting XGEVA every 3 months but because I already had to come in monthly for my Faslodex shots that he would just keep me on the monthly schedule of XGEVA as well. He also said that they don't really know why but for some reason XGEVA does seem to help fight breast cancer.
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Candy: I'm relieved to hear another person is on the 6-month schedule for Xgeva. I'm only a little over 3 years, so not sure if switching to the 6-month protocol is premature. Since you switched to 5 years, have you noticed any difference or side effects? I continue to take the calcium and vitamin D.
Ultimately the plan is for me to go off Xgeva pending bone progression. I wish for both of us no further progression. It would be fabulous to have one less injection. I'm still on Zoladex. Hope to get off Zoladex at some point too.
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Tinkerbell- I have read that with Xgeva you cannot go longer than 6 months between injections. Something about how it works in the body. Too scientific for my mind. So if we stay on this med we have to have the injections AT LEAST every 6 months. I have not noticed any difference. I don't really notice side effects when I get my shot. I do not take calcium or Vit D. I do consume quite a bit of diary products, and my blood calcium level is always within normal limits. My Vit D level is just a smidge low. My PCP wants me to take Vit D, but I have not so far.
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Tomorrow I am scheduled to have a rod put in my right femur. I am afraid and unsure.
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dutchiris - It is a daunting surgery to think about but I’ve been through it and I’m happy to report that my pain reduced significantly. I’m not one for taking pain meds but I did this time. On the advice of my orthopedic oncologist, I rotated Tylenol, ibuprofen and oxycodone. I did not have to take this cocktail for very long. I had surgery first thing in the morning and was walking with a walker that afternoon. They showed me the easiest way to get in and out of bed. The next day they taught me how to navigate stairs and I was released to go home. I had surgery on March 24 and despite a set back with the screw in my knee, I was back to doing Zumba in June. I found rehab frustrating and boring but it’s so important. Don’t skimp on rehab. Good luck and I wish you the best possible result!
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What criteria lead to this surgery for you? I had pain when bearing weight but now not allowed. Mirels criteria gave me a 12. I really have little to no pain at rest but I do have a fentanyl patch and take oxycodone (bad shoulder mets).
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dutchiris - My femur pain led to my initial diagnosis. My leg hurt constantly but putting weight on my leg was very, very painful. I took mostly ibuprofen but tried tramadol which did nothing for me. In the hospital post surgery, I tried a fentanyl patch. Not sure it did much. I found the trifecta of pills to help the best. I believe I took one kind of med every 3 hours. The time between meds naturally got longer as I slept. I had my surgery March 24 and took my last oxycodone on April 1.
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dutchiris, I'll be thinking of you tomorrow. When the onco orth said I might need a rod in my femur, I mentioned to my ortho dad. I thought he'd get mad (he's pretty conservative with medical stuff) be he actually thought it might be a good thing. He did them when he was an MD in the Air Force.
I ended up NOT needing it, but apparently, it's an "easier" surgery than I thought. I'm glad to hear rk's experience with the surgery. I hope yours goes very well and that you have a rapid recovery.
(((hugs)))
Carol
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dutchie, I hope the surgery goes well for you. I can understand how you feel the night before.
I will tell a cute story, maybe you'll get a chuckle out of. My son, a young adult, recently had to get a cyst removed from his jawline. Although an outpatient procedure, it required he have anesthesia which he'd never had before. He was nervous and worked up about it and I asked him what his concerns were. He said,"Well If you really want to know, I'm afraid I'm going to say something stupid while I'm under!" Hahahaha! He was serious but I thought it was pretty funny. Of all the things that might be legitimate concerns, that's what was bothering him? Lol! The end of the story is that everything went off without a hitch.
Now I realize your surgery is much more extensive, but I hope it goes off without a hitch, too! You'll be in my thoughts!
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rk2020 - How flexible was your leg right after surgery?
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dutchiris, thinking of you today. I, too, hope your surgery goes off without a hitch.
Carol
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dutchiris - hmmmm, I’m trying to remember as my surgery was in 2020. I will say that prior to MBC dx I was more flexible than the average person my age. I was just one day shy of my 55th birthday when I had the surgery. I remember my hip not being as flexible for a long time afterwards but I regained most (not all) of my flexibility in the hip. When I say flexibility, I’m talking about how far I can flop my leg in a butterfly position. There was never an issue with range of motion forward and back. Unfortunately although my surgery made me better for a time, progression in my hip and top of femur are causing me issues so that is now limiting my flexibility. My other issue is that I have tiny bones and the pointy end of adult size screw sticks out of my bone ever so slightly which causes irritation and hence inflammation in the area right above my knee. That does not impact my flexibility but it can keep me from walking or exercising as much as I would like. I was pleasantly surprised and amazed how well I could stand immediately after surgery. I hope your results are good too. Please let us know how your procedure goes.
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ty all. By flexible I meant bending your knee and hip like sitting and walking
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