Bone Mets Thread
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What a great visit with the rheumatologist, Divine! Someone being that thorough and helpful, wow, so glad you went to that initial visit. Hoping the medication will help and you won't have any of those rare side effects.
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Divine- I too had a ton of blood tests when first diagnosed (2014). I was diagnosed with RA and Sjogrens. I had a first cousin with Lupus who died from heart problems at the age of 39 due to the Lupus. And I too, had to have the eye exams (every 6 months while on Plaquenil). Otherwise, it was not a bad drug. That was before my cancer diagnosis, so I was freaking out, but now I think back and think "that was not bad compared to cancer". I don't remember any real side effects of taking Plaquenil.
I hope you do well with it and get some relief from your RA. 😊
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Just reading through this recent discussion since I have bone mets and am getting Zometa infusions. (Somewhat confused as to why I'm not getting xvega.) I have had the same dentist family for thirty-five years—first father, now daughter, in a big family of dentists who all got their degrees at a university here. I'm very loyal to them. When I told my dentist that I would be taking Zometa, she xrayed each one of my teeth individually to make sure there were no potential problems and assured me that they knew the precautions to take. I guess I'd rather go to this kind of dentist than the mega-businesses though I do understand the affordability issue. My bone mets (>10) don't seem to be causing me any pain so far although I do wonder how anyone distinguishes between that kind of pain and the ordinary wear and tear of growing older.
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I tried fluids with my 3rd Zometa infusion this time per the good results some on this forum have seen from doing that. Also got my usual 45 minute infusion rate. This was all Friday, a week ago. The day after the infusion (last Saturday) I thought the fluids might really have done the trick as it wasn't a bad day, but starting the next day, and still continuing 8 days later, I got the usual awful fatigue and all over deep body aches everywhere; stomach bloat and indigestion too. It has yet to stop. I've tried my usual walks and I can't go nearly as far; had to come back home in the middle of one the other day due to fatigue. While at home I just hurt all over and lay around. I have yet to have one of these infusions that was not problematic and just don't know how some people do it. Never know if I can bring myself to do yet another one. Well, I've got 3 months now to think about it. Yuck!
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@threetree I’m so sorry you’re having such horrible issues with the Zometa. Just making sure you are taking two Tylenol before the infusion as well? Can you maybe try Xgeva instead to see if you have the same reaction? I hope you feel better soon.
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Oh thanks so much, KBL! I'll probably try it again in 3 months and see what happens. The onc did mention Xgeva as a possibility, but it's my understanding that it's side effects are just as bad. Maybe I'll try the Tylenol next time. I haven't done that yet. Not the Claritin either. I'm wary of Claritin because it just dries me up in no time. I used to have no trouble with it, but over the last couple of years, every time I've taken it, I've regretted it. Weird.
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@threetree I’m totally shocked they haven’t offered you Tylenol at each infusion. They give it to me free before if I haven’t taken it. It’s really supposed to help. I hope it helps you.
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Oh thanks again, Kbl - They haven't suggested anything. I was the one who brought up dragging the infusion out for 45 minutes and then the fluids too this last time around. While they don't offer, I will say my current onc will accommodate these requests with no problem, if I bring them up. The one I had before would have probably told me, "We just don't do that!" Which was one of her standard responses when I asked for anything out of solid routine. This is an NCI designated place too. Maybe I will ask them if they have suggestions for people, beyond anything I've brought up on my own.
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Anyone with knowledge about spontaneous femoral and trochanter fractures after long term Zometa (bisphosphates) use? Or bone fracture risk with corticosteroid use?
I started getting Zometa infusion every 3 months Jul 2019. Then in Jun 2023 my oncologist changed the interval to every 6 months. This makes almost 4 years. I recently learned that this treatment is usually stopped after 3 years or according to some after 5 years because of the jaw bone necrosis and leg bone fracture risk.
I also just read that the risk for "Atypical Subtrochanteric and Diaphyseal Femoral Fractures" can be greater for patients on bisphosphates and corticosteroids like Decadron. I started Decadron as a premed for Enhertu.
Via MyChart I've told my oncologist about my concerns about continuing the Zometa and asked to tapper off the Decadron given for each Enhertu dose. She said we will have a discussion at my next appt.
I'm concerned. Any comments welcomed.
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Wendy, I'm sorry that I can't speak to your question/issue. I just want to say how glad I am to see you post. I was actually considering posting to ask the group if anyone had heard from you recently. I haven't seen anything from you for a while, and was just hoping that you are doing OK.
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weninwi,
I was on a monthly infusion of an older bisphosphonate, Aredia which is not used much anymore, for three years. My mo was concerned about spontaneous femoral fracture. That plus the fact that there have been some studies suggesting that bisphosphonates may not offer protection in preventing further bone mets led to the decision to discontinue it. That was about nine years ago and I have not been on a bisphosphonate since then.
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Hi all. Just checking in to tell you who commented earlier, I did opt out of the Afinitor. My doctor was very understanding. Meanwhile we had done a blood biopsy and I do have the ESR1 mutation, so I am waiting for my first shipment of Orserdu to arrive. I hate trying new medication, but the side effect profile doesn’t look too bad on this. I have been reading back and keeping up. For the past week, I am on no medication. I actually feel not so great. I thought a medication break would feel good. Anyone else experience this? Some sort of withdrawal?
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@gigil Ive been on Orserdu seven months. The first four were a little hard, needed naps every day. Still doing well as far as I know. I was off treatment for two months before starting and didn’t feel any different. I was on Faslodex. I was hoping to feel better.
@weninwi I’m glad you wrote this. I’ve been on since 2020, and I’m supposed to get my next infusion in June. My onc switched to six months. I will investigate and may get off as well. Please post if you find an answer.
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kbl,
I'm still thinking this through. Apparently bisphosphates plus corticosteroids increases the fracture risk. I'm given Decadron with each Enhertu infusion so this increases my risk & concern.
I found this article from the New England Journal of Medicine. The type of fracture is called an "atypical fracture". https://www.nejm.org/doi/full/10.1056/NEJMoa1916525
My MO says she prescribes the Zometa for five years for MBC and then stops it if bone mets are stable. But I wonder if my bone mets are stable at 4 years, why not stop now?
My MO responded with more explanation as to why she uses Zometa for up to 5 years…..the atypical femur fractures and osteonecrosis of the jaw are "rare complications that can occur with longer term use and must be weighed against the risk of bone mets causing serious complications like fracture and high calcium levels in the blood". Still causes me to think…if my bone mets are stable now why continue the Zometa….or at least why not take a break?
If you have a conversation with your MO about this I'd appreciate hearing what you're told. I will probably proceed with my June Zometa infusion, and get off the Decadron as soon as I can.
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My MO's approach to Zometa infusions is every three months for two years, then stop. Eight total infusions. When I talk with her next, I will ask if that's something she recommends for all her MBC bone mets patients, or if she keeps some folks on it longer.
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@gigil i think you did the right thing turning down Afinitor, I wish I had. That drug was just a monster and no one seems to ever get a lasting response beyond 3 months and even then its with a lot of side effects to manage.
I think having a break from meds its all this junk finally leaving our system and thr body having a chance to just well, rest and take a breather itself :) I wish I could have something like three weeks between drugs just to have a holiday and feel human but nope...here comes the next one!
My hip continues to improve day four post first abraxane/Phesgo injection. I had to put a note on my mirror that my job this week is to rest. That's it. I can finally lay down in some comfort so I've been taking advantage of that to catch up on sleep and give my poor overworked and overestimated brain a moment to process everything too. Its amazing how some sleep can change your ability to cope.
Oh, I have MO Monday and want to ask to go back to three monthly on xygeva just so I have it available in the future and the whole jaw and leg fracture rusk issue.
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@weninwi , thank you so much for posting the link about bisphosphonates combined with corticosteroids increasing the risk of atypical femur fractures. I really appreciate your post. I plan to discuss it with my MO next month and will report back. I've already had a serious injury with my distal femur due to high dose prednisone (it caused AVN) that was given after an adverse reaction to my first line of treatment. The femur injury was a beast to recover from, and I can't imagine going through anything like that again. We are supposed to revisit the idea of Zometa next month so the info you provided is very timely. All of these rare reactions don't seem real until they happen to you, and I just don't want to draw the short straw again.
Sondraf, I'm so glad that your hip pain is improving. Lack of sleep and exhaustion combined with pain will do a number on us. I hope rest and effective treatment gets you feeling better quickly!
Gigil, wishing you all the best on Orserdu. Afinitor seems to have some potential side effects that I would be concerned about as well.
I appreciate everyone here for sharing your experiences. It really helps to make me feel better informed so that I can ask questions.
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mc22,
I think corticosteroids increase the risk for fractures, but not necessarily atypical fractures. I can't see this mattering to a patient who's experienced a fracture, but it may matter to a doctor when discussing the risk associated with each treatment. Your femur fracture and recovery sounds like prolonged misery. Please let me know what you doctor has to say about Zometa. When I have my conversation with my oncologist I'm going to repeat your comment….rare side effects don't seem unreal when they happens to you.
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And as someone who always seems to be on thr far right side of the bell chart, I have reason to be wary. If you are also someone who tends to get that rare side effect every time, I think its worth it to be cautious and speak up.
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@threetree I feel your pain with your issues with Zometa. I’m sorry you are dealing with this. I used to be on Zometa. Then they stopped It in 2009. Then when bone mets showed up last year my Onc put me on monthly Xgeva injection with Fasoldelx. It’s a targeted Monoclonal Antibody for the bones. 💕🩵
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Hi all, thanks for the cautionary note about Zometa. I've just started it. Just curious: why is Zometa still prescribed instead of Xgeva? Also, does anyone have DEXA scans? Nobody seems too interested in ordering those for me on top of all the other scans.
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I started getting DEXA scans when my endocrinologist ordered them. I was sent to her because of an enlarged thyroid and she said since I was on aromatase inhibitors I should be getting DEXA scans on a regular basis. the NP at my last oncologist’s office agreed and they ordered my last 2 DEXA’s. I have gone off bone strengthening drugs since my scans are stable and bone mets are causing no issues and at least the DEXA scans let me know I am not at risk for osteoporosis at the present time.
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Shana - Do you think the Xgeva is less problematic than the Faslodex? I thought that from what I had read, they caused similar side effects (they are related drugs) and that it was kind of a toss up re which one you got/took. My oncologist did say Xgeva was a possibility if the Faslodex just continues to be such a problem, but I wasn't particularly excited about switching, because I figured it was probably a six of one, half dozen of the other sort of thing. What's the difference been like for you?
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Weninwi, just wanted to clarify that I didn’t have a fracture but did develop avascular necrosis (AVN) from the prednisone. I’m concerned about being at an increased risk for fracture going forward because I’ve been treated with steroids and bisphosphonates. A fracture is the last thing any of us need. We put Zometa on hold while my leg was healing, and I’m not sure I should take it again. It’s a lot to think about. I’ll let you know what my oncologist says. Thank you again.
Somdraf, I appreciate your comments about being cautious and speaking up after dealing with rare side effects.0 -
@tougholdcrow, like any treatment, Zometa can be effective for certain individuals. How someone responds is so individual, and the doctors have to make the decisions based on the information they have and what we know so far based on the research that exists. There are certain people who have a tendency to experience most of the rare side effects, it's true, but doctors are making decisions based on research, which focuses in (in part) on averages across large sample sizes to inform the decisions that they are making. Of course it's somewhat more complex where they take into account different variables to determine risks and relevance based on personal characteristics. Fortunately researchers are getting funding to delve much deeper into how our genetics interplay with drugs, and precision medicine is improving, but compiling the data does take a decent amount of time.
The best you can do is to ask your MO and oncology team as many questions as possible to understand their reason for selecting treatments for you, asking about the cost benefit ratio of trying something out and what their plans/approach will be if certain side effects you're worried about occur.
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@threetree @tougholdcrow @weninwi @sondraf @gigil @mc22 @olma61 @kbl @exbrnxgrl @candy-678
Hey all, I’m stopping in here today because I wanted to check in with all of you….I’ve been in so much pain the last few weeks, but I did have stale scans NM Bone. & CT. no progressions changes, just “unremarkable”. The bone pain in my spine,neck ribs lumbar and sacral, have been unreletless, with weakness, unsteadiness on my feet, tinnitus,, and headache with big D & nausea. Can this all be from SE’s of. Verzenio, Xgeva, & Fasoldex?, I can’t even. Ge ou of bed today😟. I feel like thes medications have become cumulative. I’m tired and solvating. I have an appointment with my Onc Jun 3rd…..sigh😦🙄
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Threetree-I am on Xgeva. The injection takes about 5 seconds and usually painless. I have zero side effects from Xgeva-the biggest pain is just having to travel to the cancer center to get it. I don't take anything before or after. I do drink lots of water every day. Seems like it would be worth trying.
As far as some of the other debates-I came into this with numerous bone mets. So far, no new ones have appeared. I weigh the risk of a femur fracture (which I hope I never get) versus spread of the cancer. It's seems like the cancer spread is more likely to be deadly than a painful broken bone. For someone like xbrnxgrl, with only one met, the decision could be quite different.
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Chicagoan - Thanks so much for letting me know about your Xgeva experience. I think I'll read more about it. I thought I saw something that said it might not work as well as Zometa, and also has a similar side effect profile, so to this point, I hadn't really seen a reason to switch, but I will dig into the particulars even more, after hearing what you've had to say. Really appreciate it.
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