Bone Mets Thread
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simboobby, sorry to hear about your diagnsis but hope you find the support you need among us!
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Hi everyone - anyone with bone Mets not taking Xgeva or Zometa and having good outcomes with bone Mets remaining stable?
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@sunshinedaydream, Mine were stable for 3 to 4 years without Zometa or Xgeva. I've had recent progression and am hoping my current treatment of IV Taxol knocks it back.
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Hi @Jodyj, thanks for getting back to me. I’ve been delaying starting it because the risk of osteonecrosis and the thought of interfering with the natural bone growth cycle. I’ve also needed to have all my cavities in all four quadrants redone before my dentist will sign off on starting Xgeva, and getting those appointments in with all my other appointments and having time to recover from the fillings has all prolonged my starting the treatment. I have one more quadrant of fillings that need to be redone and then having a BSO in February, so will likely start in March.
if you are up for sharing, I would be interested in knowing why you have not taken either.
thank you.
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@sunshinedaydream, I was afraid of the ONJ risk. I have had so much dental work in my life and had to have an extraction because of a dental infection early on in my first year of MBC diagnosis. Radiation, letrozole, and Ibrance took care of a soft tissue tumour in my thoracic spine after a few months, and it felt quite miraculous. Extensive bone mets were also stabilized in my spine and pelvis. So my onc didn't pressure me about the bone strengtheners. Wondering if that will change now. I'm still afraid of ONJ.
Good luck with your dental work and the BSO procedure!
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I’ve been having a time of it. I had the rod placed in my femur in October due to an impending break. There was a cancerous lesion in the bone. I had five rounds of radiation to the area during Thanksgiving week. I was making reasonable progress to where I was walking with a cane and sometimes able to walk a bit in the house without it. I even got out in my car and drove to the store a few times. Then, the second week of December, suddenly my leg became very sore when I moved certain ways. I have pain in my groin. I am back to using a walker to get around. I’m not sure what the heck happened, as I did not fall. I couldn’t bear to have a massive disruption of doctor appts or tests or who knows what else heading into Christmas, so , since I have a scheduled follow up appt with the orthopedic surgeon on January 3, I decided to baby my leg through the holidays. That’s currently where I’m at.
Would anyone care to toss out any ideas what they think is going on with my leg? When I’m sitting I don’t feel pain, maybe slight discomfort. When I go to stand, I feel pain in the groin area. I’ve had that since before the rod placement and it’s never fully gone away, even after radiation. I do not feel safe to walk without the walker. Could the radiation have done something to the thigh? I’m totally at a loss.
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Id been having groin and thigh pain/muscle loss all year and frankly I think it came down to nerve compression in my back somewhere due to cancer/muscle inflammation. Look up the obdurator nerve and femoral nerve. I was reading the other day that sometimes with hip replacements things can get stirred up a bit and cause groin pain during healing, perhaps something happened with the surgery?
That being said, I have had considerable problems with inflammation in the muscles around where the cancer was radiated, and had a ton of pain down both legs post radiation which was only alleviated by steroids. Its all slowly improving but I still have thigh pain when walking longer distances withthe cane, so next step is celebrex apparently. And PT.
There is a lot going on in that area and referred pain is certainly a thing. But I hear you on steadiness with walking and groin muscle strength, I still can't stand on that leg because the adductors aren't strong enough.
I hope you can find answers soon, do you have pt lined up? As annoying as getting those muscles working will be, pt should get you thr most bang for your buck. Though I don't blame your for babying it over the holidays, best to do the right exercises under guidance and modification!
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Oh Devine how I wish I had advice but this one has me stumped. I had a femur rod placed in 2020 and have had off and on issues with pain (none in the groin) and they have all been related to either inflammation at the sites where there are screws or a weak knee muscle. Yours existed pre surgery so that makes this more of a head scratcher. I hope you find the root cause soon. It’s so important to keep our muscles strong. Please keep us updated. Hugs.
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A couple of years ago I fell on a concrete floor. My last bone scan showed a broken bone which didn't show up on X-ray at the time. They decided the groin pain was from an irritated hip flexor muscle. I had a walker and then a cane. PT game me exercises which really helped. No residual pain at all.
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Thank you, sondra, rk and wren, for your insights. It’s truly appreciated and has helped calm me down. I guess I want to find out when I go to the surgeon if the femur or hip has been compromised in any way, like a hairline fracture in the hip or something. I’m hoping that is not the case. I didn’t fall which I think is in my favor but with mbc you never know.
Inflammation of the muscles around the radiated area or pinched femoral nerve is not something I knew about but after reading your comments, sondra, it could be a possibility. The issue didn’t come up until after radiation. Altho it was three weeks later, I read that radiation continues to work even after the treatments. It would really be great if I could take steroids if the pain was caused by inflammation. (In September, I had horrible pain in my wrist after doing yardwork. Went to express care and learned I aggravated the arthritis in that area. Steroids and a splint helped resolve the matter.) I am hoping the surgeon can shed some light on my leg troubles. They take xrays right in her office, so I hope they can rule out any fracture. We’ll see. I will let you know.2 -
question for bone mets people! I just had 5 rounds of radiation on c3 and T7, and took dexamethasone 4 mg daily from 12/21 until 12/28. My treatments had to go over the long holiday weekend, so I just kept taking the dexamethasone so I wouldn't crash too hard on xmas weekend. (I've done this one time before, but didn't take the steroids and had a bad pain flare which was awful. but overall recovery didn't take that long.)
Now, I'm exhausted!!!!! I know there's a steroid withdrawal period, but I didn't think it would be so tiring. Normal?? How long to get over the steroid?? I don't think I am going to be able to stay up until midnight tomorrow night!
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@kkcita Hello and I’m sorry for the post radio feeling, it’s all too familiar. I was on 2mg Dexametaxone during radiation, then one day yes one day no for the week after to taper off. I was advised to take 4 mg initially but I just couldn’t handle it so lowered the dose with the radiologist’s approval. And yes, I was so tired during radiation, had12 sessions to T3, I could barely speak for a while after having the session. I hope you feel better soon. Forgot to mention I was told if take steroids 1 week it will take 3 for my body to work them out.
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so, I also have bone only Mets, innumerable. My neck was getting sore, last pet scan showed a little increase in met activity there in my c3 vertebrae. So rather than change from Kisqali/letrozole, I had 5 sessions of radiation there and another vertebrae just to help with pain and to extend the duration of my treatment for now. I think this is a common thing to do. I’m not sure if my doctor thinks of this as progression or what. I know the cancer cells are not gone but if they are just chilling out not killing me and I can function, I think i am happy enough. My neck felt better right away with the radiation. So, perhaps that could help with the pain, and not have to switch to a new line of treatment.
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HI Ladies, I would like to give all of you an update/rk2020 thank you so much for your response. No mention anymore of clinical trial by my oncologist. She confirmed she is starting me on the flasodex and verzinio adding a bone strengthening medication a little later. She told me that the women in her practice have done very well on this protocol for a long time.I ham starting on Jan 4 with the shot and I pick up the Verzinio on the 4 also. I will be reaching out to you all more often now that I have a plan. You ladies are so right I do feel better knowing there is a plan and I will be starting this week. Still wish it could be sooner.
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Question from a Caregiver.
My wife was diagnosed with Stage IV cancer with mets to bone in Jan 2022
iBrance and Kisqali worked but had side effects.
Since Oct 2022, my wife has been on Verzenio(Abemaciclib) and is tolerating it well with clear scans.
Is there anyone who has been on Verzenio for many years and how are the medium to long term prospects?
Thanks a ton!
Wife(Stage IV, diagnosed Jan 2022, Mets to Bones, Location: California)
Hormone receptor (HR)-positive, human epidermal growth factor receptor 2 (HER2)-negative advanced or metastatic breast cancer
Medicines: Verzenio(Abemaciclib)
denosumab (Xgeva) estrogen receptor positive
fulvestrant (Faslodex)
goserelin (Zoladex)
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@andy280, welcome, and sorry for your wife's diagnosis. We hope you find the information you're seeking here in this great group of people.
We wanted to let you know also about a supportive space we have in our community specifically for husbands and caregivers of breast cancer patients. Connecting with others who understand the unique situations and emotions of supporting a loved one during this time can be super helpful. It's called Husbands/Partners of Stage IV Breast Cancer. Feel free to jump in and say HI! ☺️
Our best wishes to you and your wife!
The Mods
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Hello Ladies, Tomorrow I start my Verzenio and Faslodex. I am a little nervous. My oncologist said that a lot of women in her practice do very well on this for a long time. I hope this will be me.
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Good luck with your first session, @jen1! It's completely normal to feel nervous, but we're hopeful that, as your oncologist said, you'll do incredibly well on this treatment for a long time.
If you want to share your experiences with other members going through Verzenio treatment, feel free to join the conversation in the Verzenio for Stage IV thread.
Thinking of you, and looking forward to hearing more from you soon!
The Mods
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Jen1, I'm also rooting for you with the start of this new treatment! I remember being slightly terrified when I took my first dose of ibrance, and I've been on it now for three years.
@moderators, I'm slightly confused by your above suggestion that she join the "starting chemo" support group? Was that a typo? Seeing as how she's not starting chemo but a CDK4/6 targeted therapy?
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@sf-cakes Thank you for pointing this out — this was a mistake our end. Ending our post now!
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Hey everyone! I hope everyone's holidays went well. While having a good time, I also spent more time in pain. Thankfully I start my new treatment tomorrow. I'll be moving on to Piqray and fulvestrant. I'm nervous for the new drugs and the many, many side effects associated with Piqray. But I'm also hopeful the treatment will work. I also talk to my RO next week so hopefully I can get some palliative radiation in.
However, my MO called me today to give me the results of my recent biopsy. It seems that my hormone positive status might have changed to negative. My MO said that my estrogen markers had no internal controls but the external controls were "appropriately positive." He says this is an indeterminant result, but it could mean that I am triple negative. I'm currently freaking out in my weird way. I was actually in the airport when he called and when I turned to tell my husband I burst into tears, so that was fun…. We decided to keep on with our current treatment plan and scan in three months, if not sooner. If there are issues at that time, we will re-biopsy and re-evaluate. But I know there isn't a lot out there for triple negative. Sigh…. what a way to start the new year….
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Hi Ladies/Thank you kbl and sf cakes and dear moderators. Ended first week of Verzenio and flasodex. So far ok. I am starting to feel pain . I have been having aches and pains sinse i turned 50 lol. I am now 65. I also have degenerative disc disease. So now I am paranoid about every ache and pain before the relapse i just kept on going popped a tylenol and was on my way, But now I am so afraid. How do i not obsess ladies.
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@jen1 Mostly time is what it will take to not obsess, I’m sorry to say. I can’t say I don’t think about each pain maybe being progression, but I think my husband worries way more than I do now. The medications can cause bone pain as well, which doesn’t help. I’m glad the first week went well for you. I hope any pains the meds may cause you start to dissipate as your body gets more used to them.
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@katyblu Sigh. I learn something new every day. I’ve never heard of an indeterminate result. Another sigh. I hope your next scan results are positive and you can continue on your current meds. 🤞🏻
@jen1 How do you not obsess? That’s the 50 million dollar question. Especially since I ignored aches and pains thinking it was just aging when lo and behold it was cancer. Ugh. But like KBL said, time with this disease can help with the mind games it plays with us. Hugs.
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Thanks rk! I’m hopeful that this new stuff works. Aside from my first day of treatment, in which I had 5! shots AND my new pills and felt like poop all day, I’m doing relatively well. Side effects so far are a small headache about 2 hours after taking my pills and some nausea in the evenings. I hope I’m part of the 20% that does NOT become hyperglycemic.
I did speak to my RO yesterday. Good news is he can do some radiation on my left 7th rib for palliative relief. Bad news is that he cannot do radiation on my left hip since my last session in the same place was only 4-5 months ago. He says more radiation could lead to a fracture there, so he referred me to an orthopedic oncologist. I have an appointment on the 22nd to see if they can do anything. I’m only 43, I’d like to be able to walk. I’m currently limping around a bit and trying not to move suddenly. I really hate this fucking disease (sorry not sorry).
I don’t know…. I’m just having a really hard time right now. Nothing seems to be going my way really. I feel cursed and depressed. Sorry y’all….
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@katyblu I’m sorry you have an indeterminate result. Nothing like being between knowing and not knowing what’s going on. I hope you’re able to handle the Piqray. I know there is a new drug for the PIK3CA mutation that just got approved, so if it’s too rough, maybe you can try that one. The new drug is capivasertib if I’m spelling it right. It’s supposed to have fewer side effects than Piqray. It was approved in November.
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I'm in such a fog and muddle that I don't know which posts I've commented on.
@katyblu, I'm sorry you're feeling depresses and cursed. This disease sucks, no question about it. Some days are worse than others…
As kbl said, there is a new alternative to Piqray, which is Truqap. I'm going to be starting it on Jan 22. I've also heard that it may have fewer side effects, but I'm still going to get some Imodium AD just in case. MO wants me to monitor my blood glucose. She suggested getting a "home" kit, rather than come into the lab for a finger stick. I got the kit on Amazon and am trying to figure out how to use it. There are some good videos on how to use the lancet for this particular kit.
Sleep continues to be random. Some nights I sleep great, but others not so much. I thankful I don't have to be up and around early. DH gets up at 0-dark-hundred to go biking, hiking, or whatever.
I hope the rads help your pain. My first rads to spine, hip and femur were palliative. My RO is calling the rads to my esophagus, "Curative". He had to go back and forth with my insurance company to get this rad treatment approved. Apparently, insurance wanted to do something quicker and cheaper, but he insisted on this one. He told me that he doesn't get paid any more to do this plan, and I joked that he needed a new BMW. I love this man!
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