Bone Mets Thread
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I am coming up on 2 years on Xgeva and my MO has not said anything about reducing the frequency of the shot from my current monthly schedule. I looked on the Xgeva site and could not find a schedule that they had on there. I am pretty sure I asked my MO about a year ago if I would be reducing the frequency and I think I was told that it would always be monthly. I go to see him right after my next scans in November and will ask again. I have seen on other threads that some people have been on a monthly Xgeva shot for many years. Anyone know if there is a schedule to show when it should be given less frequently or even dropped?
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Cowgal- From what I have read--and I am not an expert and all this is over my head-- there is not a consensus with the "experts" on how long or what frequency to give Xgeva. Some things say monthly for "decades". Other articles say can change to 3 month dosing after a couple of years, but not much trial research out there on the efficacy of this idea. I even heard a webinar from an oncologist that explained how Xgeva works (again way over my head) and he said should not go past 3 month dosing because of how the drug works on the bones (I cannot explain it, something about RANKL binding???).
I have a "local" friend in my town that has been on Xgeva monthly for 8 years, changed to another MO, and went to 3 month dosing.
I don't know.
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Thanks Candy! It just seems like a lot of times that there is no rhyme or reason to some of this cancer stuff!
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Candy - I see several questions that need answers but the questions are somewhat intertwined. How often should Xgeva be administered AND how many years should I continue to take Xgeva AND should my frequency of shots change as time goes on.
Here is one link that might shed a bit of light (just a bit) on the frequency question: https://journals.sagepub.com/doi/full/10.1177/1758835920982859
I found a study from 2016 regarding duration but I did not find it terribly enlightening. I'm including the link in case someone else reads it differently then I. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4669370/
Back in 2011 breastcancer.org published that the risk of ONJ increases in women with MBC. I'm on Zometa (zoledronic acid) but have always viewed taking it as a balancing act of risk vs benefit. Unfortunately I cannot find good data on either of these drugs to help me determine when my risk starts to outweigh my benefit. And I've gotten different answers from different MOs.I find this all very frustrating.
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I just messaged my MO nurse with my question about using Xgeva on 6 month dosing versus changing me to Zometa or Prolia every 6 months. Here is her reply----
"No we can continue the xgeva even is we still move to every 6 months. When you have been on it that long there is a concern for actually having fractures so we spread things out. Prolia is a lower dose we give to help prevent osteoporosis not a treatment for metastatic disease."
RK- I will check out your links. But, with my MO, this is her thoughts (above).
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katyblu, I'm glad you're starting to feel better today. I didn't realize you were in the military. That's a whole different thing. I was even going to ask the other woman at the check-in desk at Scripps to verify my identity, if necessary. I was going to say, "Alice knows me. I've been coming here since 2007." The funny (or not) thing was that I brought my purse, but I left it on the floor of his truck when I got out and grabbed my knitting bag and my cane. Just forgot the purse.
I have a niece who lives on Coronado. I understand that we now need a Real ID to get onto the base. My husband and I both got our Real IDs a couple of years ago.
Anyway, I do hope your MO has a good plan for you if you need help after hours. I'm supposed to call my MO if I get a fever over 100.4. Of course, the only time I get a fever is on a Friday night at about 9:00, right?
Carol
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Carol, yeah it always seems to be at the worse possible time! I’m doing better so far. But my MOs office said if it gets worse to go to the ER. I will this time. Still waiting for the palliative care doctor to call. I’m really not a fan of telehealth appointments. I’d much rather be seen in person, especially the first time.
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Update: Just had my appointment. The doctor seems nice, we’ll have to see in the long run. She suggested a long term painkiller and a short term painkiller, with constipation meds to help. I’m not sure how I feel about the long term painkiller, I don’t think I want to be on an opioid long term. Are any of you taking something for long term pain? I’m usually a 3 to 4 daily. My pain yesterday was an 8 and today is about a 5. I can see using an opioid for short term pain. Any thoughts or advice? Thanks
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Katyblu, 2 months ago I started using a Fentanyl patch (very low dose .125 mcg per hour) to deal with my bone pain. I use 5 mg oxycodone for breakthrough pain. Otherwise, ibuprofen, or on some days, nothing at all.
I don't feel dopey or anything on the patch. Frankly, I don't really feel dopey from the 5 mg oxy either (though I do on 10), but I definitely know I have something on board with oxy. The patch has reduced how much I use oxy. I take 3-5 oxy per week at most now. So far, so good.
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Thanks Pearl! I talked to my MO and he wasn’t concerned with me going on the opioids. Both he and my palliative care doc said I could start slow with one dose a day and see how I feel on them. I’m going to try it out and see how I feel.
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Candy, my understanding is that 2 years is about the limit for monthly Zometa or Xgeva because of the ONJ risk. I would keep asking about every-6-month Xgeva, because my understanding is that, like Prolia, there can be a rebound effect....which I think has something to do with RANKL. It has to do with Xgeva's mechanism, which is to interfere with the process of the cells that breakdown (resorb) your bones, but then when it's removed they start doing their normal thing double time (not, obviously, the technical explanation but what I understand). One MBC doctor from Barnes I heard at an MBC conference said for this reason when people go off regular XGEVA medication she likes to put them on Zometa for awhile, because Zometa works differently and lays down a kind of base of bone building that will interfere with the Xgeva rebound affect. One of the reasons I chose Zometa over Xgeva in the first place. But I'm not sure at what point the rebound can start....maybe 6 months is the outer limit.
So sorry to hear about your pain Katyblu and hope the new drugs work. I share your hesitancy about opioids...but also know it's important to stay ahead of pain, and sometimes they are necessary for that, I believe (like Pearl-girl, my mother did very well on Fentanyl patches for severe spinal stenosis pain...though I took some convincing this was a good road to go.
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Someone posted a talk with an MO who talked about how long to stay on these bone strengtheners and she said it wasn’t really known since people with bone Mets are living so much longer they never had anyone on them very long in the past.
she also said that the pandemic made her lean more towards using Zometa since disruption in dosage was less detrimental due to the mechanism of action.Though she thought both were good Meds, just Zometa better if dosage disrupted.Soon after I heard that lecture my MO called me and said we should think about stopping Zometa since I was getting to the point that jaw necrosis while still rare was getting more prevalent due to my long history of use. Happy to get one fewer IV.
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prairiesea- That is what I was thinking about Xgeva. I watch webinars/conferences and remember something about RANKL and the rebound effect. I cannot remember who or what webinar said that. But, my MO wants to continue the Xgeva, but 6 month dosing. I hate to question my MO, but I guess I am. But if that is how she is treating bone mets patients, then it is not just me.
Does anyone remember who said that about Xgeva and RANKL rebounding? Prairiesea do you remember or have a link to the discussion? I will try to look for it. Maybe it was thru Komen or LBBC.
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Found it.
LBBC-- Living Beyond Breast Cancer-- April 2021 Virtual Conference. I attended and heard a presentation on Bone Mets from Dr. Katherine Weilbaecher from Wash U. If you go on the LBBC website you can view her presentation. I could not find a link to post on here, but just go to the website. She said that with Xgeva you cannot go longer than 6 months between doses as the drug is wearing off and you can get rebound RANKL production and MORE bone loss. She also discusses a "treatment vacation" after 5 years of treatment. I need to review her whole talk--- it is 1 hour in length.
I think I will ask my MO either about a treatment vacation or scheduling my Xgeva around 5 months mark to prevent the rebound effect.
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Here is the presentation. I figured out how to get the link. Watch it all, but the discussion about zometa or xgeva is about 12 minutes in. And the mention of a treatment holiday is during the Q&A portion after her presentation.
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Katyblu - I take Tramadol every night. It's considered an opioid based on the warning label, but I have been taking it over 6 months, and I don't feel addicted to it at all. I don't feel drugged or anything, but it helps me so much. The other thing I have taken daily is one Alleve during the day. Alleve works better for me for pain than Advil or Tylenol. Lately, I have been taking CBD oil during the day instead of Alleve and I still take Tramadol at night. It's worth it for me to not be in terrible pain. I can walk a lot like I used to thanks to radiation and the pain killers.
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Katyblu - I was hesitant about opioids also. My MBC showed up as a huge tumor in my right femoral neck and ball of my hip joint so I have a huge rod placed through that and down the femur. I was given 5/325 Hydrocodone (Norco) and 5 mg oxycodone post surgically. I'm almost 2 years out from that surgery now and still have a prescription for the Hydrocodone because of mets to the spine and a compression fracture. I try to take them sparingly so that I don't develop tolerance. My go to is 1000mg Tylenol and 400mg Ibuprofen 2-3 times daily. That usually works for me especially if I'm adding ice or heat to the area. When it doesn't I take a Norco to get ahead of the pain. I can't take oxycodone due to prolific nausea and vomiting. I take the Norco at night because I get pretty groggy with it.
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Thank you Emac and GoKale. It’s helpful to know that others are okay on the regimen. My PCD prescribed oxycodone ER 10mg for long term and oxycodone IR 5mg for short term. I don’t mind the short term pain relief but I’m still hesitant about the long term usage. I don’t have a ton of pain normally, usually at a 3 to 4 which I can take Tylenol to relieve if I need to. So I’m wondering if I should start with the long term painkillers. Also, I don’t drink a lot but my DH and I have some plans coming up where we plan to imbibe a bit. And it looks like I can’t drink at all on the ER dosage. Hmm, I’m still trying to figure this out… I appreciate everyone’s advice
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Candy,
The program was very helpful! Not reassuring about tooth extractions, however. Hmmm
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Asked my MO today about time limits on Xgeva… she said we keep going until it’s not helping. No time limits!
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Candy - Thank you so much for posting the LBBC 2021 Conference video! I loved last year's session by Dr Adam Brufsky and yet learned so much more today. EVERYONE WITH BONE METS NEEDS TO SET ASIDE AN HOUR AND WATCH THIS VIDEO! Don't skip the Q&A. So much good info. I spent hours googling and reading on this topic the last two days and yet this video gave me answers that I could not otherwise find online.
I will admit that I pulled up the video using my YouTube app so that I could increase the speed to 1.25. She talks a bit slow for me which is in complete contrast to Dr Brufsky who spoke so fast.0 -
Candy, and everyone--this is exactly the talk I was referring to. I found it so helpful when I attended the virtual conference about a month after diagnosis. Barnes is my second opinion institution and I tried to get an appointment with her but was assigned to someone else. I wonder if I should try again if/when I need a second opinion in the future....the guy I did get assigned to has not been as forthcoming as I'd like. I wasn't all that reassured to hear "this is what I think but you should listen to your oncologist." My MO and I have developed a pretty good rapport, but I thought the role of a second opinion at a research institute was for them to call the shots.
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I also had the Ostecool and kyphoplasty in September for a compression Fracture to T11. Was having lots of pain that radiation did not take care of. Unfortunately the procedure did not work to alleviate the pain and like you that was one of the worst procedures that I have ever been through. Despite massive amounts of drugs I was partially awake and like you I could feel them pounding on my back. I seriously had the image in my head that they were nailing boards to my back.
Woke up with some of the worst pain I have ever felt in my life!!! I'm just devastated that it did not work. Every day is a battle with the back pain. I'm on hydorcodone but it only takes the edge off.
I really hope the procedure works for you. I'm just glad to see that someone else had the same trouble with the procedure that I did.
Tons of prayers coming your way.
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ah yes, good video from LBBC. I think it’s the same one I posted back in June - I wish the mods could edit the original post in this thread to include this link. The link to the information that’s there now is out of date - leads to a “NOT FOUND” page.
Maybe I should PM and ask0 -
Pearl-Girl
I also had the Ostecool and kyphoplasty in September for a compression Fracture to T11. Was having lots of pain that radiation did not take care of. Unfortunately the procedure did not work to alleviate the pain and like you that was one of the worst procedures that I have ever been through. Despite massive amounts of drugs I was partially awake and like you I could feel them pounding on my back. I seriously had the image in my head that they were nailing boards to my back.
Woke up with some of the worst pain I have ever felt in my life!!! I'm just devastated that it did not work. Every day is a battle with the back pain. I'm on hydorcodone but it only takes the edge off.
I really hope the procedure works for you. I'm just glad to see that someone else had the same trouble with the procedure that I did.
Tons of prayers coming your way.
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Carolina, that totally sucks that it didn't work for you. Enduring the pain of the procedure and the recovery feels pointless if it doesn't lead to relief from your chronic pain. I'm so sorry. Tons of prayers coming your way, as well.
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I second the thank you to Candy for posting that video from Dr. Weilbaecher about bone mets, just finished watching it. Really great info! Thank you!
Thinking of everyone dealing with bone pain, I'm sorry and it just sucks. Hoping for pain relief for everyone.
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hi all,
I am recuperating from the femur rod from hip to knee surgery. Right leg My surgery was Sept 9, 2021. My leg is better. I am almost walking but I still use one crutch.
My new concern is a new pain on my left side front ribs around to back almost like a side ache. It doesn’t hurt when I stand but does hurt when I lay down or sit a certain way. I am on Falosdex injections due for one on this Monday and just finished Ibrance…I am nw on 7 days off.
I was so happy that the switch to 100 mg Ibrance didn’t make me sick and I was feeling better. Did anyone feel worse on the 7 days no Ibrance or do I have another met getting worse. I am pretty tired today not sure if it is from not sleeping due to pain or what.
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KatyBlu - I think the key to living with opioids is to take it slow. My retired MO once said you don't need to hunt squirrels with a bazooka. If you are having a day where your pain is tolerable and Tylenol/Ibuprofen works to keep you comfortable, I would do that. I live on Tylenol/Ibuprofen most of the time but when that isn't working after two doses I take my Hydrocodone and combine that with ice or heat. Unfortunately I don't think there is really any right way to do it. You just have to experiment with it and find what works for you. I don't usually drink but if I do I try to plan ahead and maybe stick to the non-opioids.
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Hi Positive2Strong, I found that I felt cruddy Days 1-4 of my week off Ibrance. Then I felt great Days 5-7 and into the first week back on. I actually miss being able to use that drug, as I finally adapted to it after some months and some dosage adjustment. Having said that, we all know the constant worry of a new met and wondering if it's SE pain, normal aging pain, an unnoticed bruise, or a met. I try very hard not to focus too much on it, other than recording it for awhile as to pain range, spikes, duration, etc. Then I share the data with the MO at my next appt (every 2 months for me these days). What else can we do?
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