Has anyone refused or stopped Xgeva and Zometa??
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I get shot up with Prolia (denosumab) - they were in a real hurry to get that into me because of the pelvis/sacrum crater I had happening. Its supposed to help support the healing of the bone along with the radiation and the calcium etc. So far I guess thats been happening, but I really worry about the jaw stuff. I have had some slight pain in my lower face on and off. More of a throbbing, which worries me. Dentist is aware and is keeping an eye on stuff, but it scares me quite a bit.
Figure ill give in a few months and then see where we are at with the bones and then talk about maybe backing off a bit early. Like Forza I also get to see a minion (he's more into brain stuff too) who is nice enough but man, he's not giving me real strong vibes of being able to think outside the box and go off-piste if needed. His boss and the head honcho, however, now that may be more productive.
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“Increased risk of broken bones in the spine after discontinuing XGEVA®“ is listed as a possible side effect on the front page of the Xgeva site, along with the other side effects
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nicolerod: would you please elaborate on this “Philly I have to disagree with your MO...after seeing people with broken backs and necks unless I had extensive bone mets or pain..“?
Who have you seen have this happen to? How many people? What were their circumstances? Are you positive it was the xgeva that caused this if they already had extensive bone Mets?
Not trying to be argumentative here but sincerely curious. I find that there’s usually more to the stories than what we read online, quite often. And j can’t help wonder if the folks with extensive bone Mets perhaps are given better QOL with the xgeva for a few years and the breakage was prevented for a few mores years thanks to the drug rather than the drug causing it? If they already had extensive bone Mets then there’s a much higher chance for breakage/fractures.
Just curious about this since I AM on xgeva and I DO have extensive bone Mets.
Thanks for taking the time to do a little more in-depth research!
Philly ❤️
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Philly... it's all good I don't mind that you asked me that...and the reason I disagreed with your MO is based on the posts I read and pictures I saw on FB...feel free to go in the Metastatic Breast Cancer Group and read them all...maybe just do an XGEVA search in that thread and you will find them. Pics of the women in hospital beds and as far as saying it is from that ...that is what there doctors in the hospital said...I would imagine they are knowing this based on what they see in the MRI's, Bone Scans and surgery these women are having. I would guess they can see the product (xgeva) substance in the crumbled deteriorated bone..and they would also be able to see cancer too. They told the few women whose post I read that it was from Xgeva and that this can happen after some time. That personally scared me enough to decide I don't feel i really need that right now. Maybe in the future...but for ME...not now. Especially since the women all said they didn't realize this could happen and if they knew it would be like this in just a few years they wouldn't have done it. Hinesight is always 20/20.
Just because I disagree with your MO doesn't mean I am right or he is right. We all have to do what we feel is right for us. It is not a secret that Xgeva can lead to more broken and deterioration of bone..its in their insert of the medication and you can read it on line.
Also if you read my posts you will see that I said I WOULD go back to taking a bone strengthening medication if I had extensive bone mets...then yes, you probably should be taking it. I said I currently do not...so the risk for me does not outweigh the benefits.
Hope I explained that well for you
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thank you Nicole , I don’t have anybody to talk to about these things. The minions at this point in their career have been in medicine for 9 years so I shouldn’t call them Minions to be fair. But they only ever say : it’s protocol ??!? Useless.
I wouldn’t say I have extensive bone mets. It was ribs (disappeared with the Kisqali) and right hip (shrunk , thank goodness because that looked huge !) and also on the right that bone you sit on when on a bicycle seat. Biology/anatomy was not my thing in school. The suspected spine met turned out to be arthritis. Can’t make it up.
Only started hurting AFTER the biopsies. Yes I had 2 because my first one was done IN THE WRONG HIP !!!
I got all the paperwork approved to start. Already had my wisdom teeth extracted. But then I read the Xgeva leaflet several times online and it doesn’t feel right for me ?? I know that’s not scientific but just my gut feeling. And it gets paired with a daily mega dose of calcium.
My mother has osteoporosis and gets Prolia 4 times a year. Her bone density scans look worse every time (2 yearly). So clearly that’s not working.
Ach , decisions decisions :
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my mos at MSK quietly and without any explanations stopped administering xgeva...
now, I don’t know about you, but have you ever known a doctor or hospital that doesn’t like medicating us?....I have to deduct that the se are serious and they( hospitals and pharmaceuticals) all fear massive lawsuits....
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Nicolerod - thank you so much for explaining your POV. that helps to hear! I haven't seen or heard anyone on any other platforms discuss the issues that you have seen and read about. That sucks and IS frightening! I DO sometimes feel like a lamb being led to the slaughter and so many of us on here are quite wise and well-informed. Hence I am grateful for these boards. I think that for me, Xgeva has had minimal side effects that I have been aware of (once the cancer became more or less in "control" by the medication regimen I am on). I am so grateful that I am alive, living as well as I can be, in the face of stage 4 MBC. I wish for myself and you and all of us that we continue to be able to listen to our own "truthometer" inside - the quiet voice that speaks from our hearts of knowing and intuition, and be comfortable with whatever decisions we make along the way, whether they turn out good or bad. There is so much unknown in this realm. I really do appreciate your constant search for more knowledge and shares
Frisky - that is so weird about your MO taking you off Xgeva! And more so that you didn't very loudly ask about it? LOL! I am surprised! Correct me if I am wrong but I do not see you as shy or afraid to speak your mind
All VERY positive characteristics that I admire. One thing that I wonder about...being that I am POSSIBLY facing a medication change...does anyone know the answer to this one...???
If they take me off Ibrance, Letrozole...will I stay on Xgeva and will I stay on Lupron? I am only 42 and was put into medical menopause with Lupron to deal with my HR+ status. I know this may sound weird, but I really do not mind not having my period anymore...although the menopause I could do without LOL! I am wondering how others have dealt with their menstrual cycles around all of this and with medication changes?
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philly I believe they will keep you on it bc they wanted me to stay on it when I stopped Ibrance and letrozole.
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I know any time I ask my MO about any drug, she says indefinitely. She actually says "FOREVER" and I would prefer if she said indefinitely since that implies there COULD be an end at some point. Another thing she always says is "So many women are living longer now with MBC and we do not have protocols for tapering off treatment and the like". No one wants to be first to take anyone off any drug, it seems.
Anyway, I don't think I've asked her specifically about Xgeva and I have a different HER2 status hence different drug regimen than you ladies do so YMMV. And I'm post-meno.
I do know she wants me to stay on Xgeva this year. But I'm going to ask if Xgeva is "FOREVER" at my next appt. Because if I continue doing well, I have different ideas about that.
*** Of course, with I/L, H/P etc "forever" means "til it stops working then you get something else". She did say that hormone therapy is FOREVER for me. I specifically asked because I have fatigue, stiffness and joint pain that I attribute to anastrozole. But fatigue and joint pain can also be caused by Xgeva.
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Frisky,
Yes, my mo is the one who brought up the idea of stopping bone strengthening drugs! I was the one on the fence but I haven’t had any bone strengthening drugs for about five years. My mo is also the one who gave me a choice between chemo and aromatase inhibitors (my second opinion mo was in agreement as well). I chose the AI’s, so although I am on medication, chemo was never pushed. My doctors are all salaried so there is no incentive to prescribe extra meds, tests, services etc
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I was on Zometa for 5 years and my last infusion was in 2012. I have not had a fracture nor ONJ (knock on wood). I was NED by 2008 so that may have been a big factor. I had Zometa together with chemo, so every three weeks at the start, monthly after chemo and with less frequent dosing periodically (quarterly, biannually, yearly). Each time it was my call, including stopping altogether, and my MO agreed. My bone density was tested twice while I was on AIs and showed above average density, which was probably thanks to the combination of Zometa, diet, Vitamin D supplementation and weight lifting. (I used to be osteopenic shortly before my diagnosis of de novo bone mets.) I imagine that while Zometa may slow down the process of bone remodelling, the weight training was able to partially offset that effect. It also likely helped that my blood glucose is very low (thanks to lifestyle changes) as high blood glucose can adversely affect bone density and strength. I did switch from AIs, which tend to weaken bone, to Tamoxifen which tends to strengthen bone in postmenopausal women. Now I am off Tamoxifen (at my request, and not on any other med) and starting to worry again about my bones. Will probably ask for another bone density test, even though it doesn't measure bone quality. As someone asked about estrogen, I do get my levels checked regularly. Zometa tends to be more effective in a low estrogen environment. Also prior to doing dental work while on Zometa, I asked my MO to check bone resorption markers which may give an indication of how risky dental work will be. My markers were normal.
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Wow, this is very helpful information, heidi, thank you so much. I am saving this post in a text file so I can discuss some of this with my onc next visit.
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Heidi...wow you are HER2- and have been NED for over 10 years??? What meds/treatments have you done?
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Heidi,
Good to “see” you! I also experienced no fractures or ONJ when I was on Aredia ( older bone strengthener) but my mo was the one who recommended stopping bone strengthening drugs. I will be meeting my new mo in early February yard will ask her opinion. Congrats on 10+ years of NED. I just hit 8 1/2 years NED myself
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Phylly, you're absolutely right...I did ask my medical team for xgeva injections a few times because I had assumed that they had forgotten to schedule it somehow. Now, organization wise MSK's people are top notch, so that was not a typical situation for them.
When the situation kept on recurring, I no longer questioned it...I have a strong intuition that gets only better in my old age...and it told me to be quiet and let it go.
The reason I had previously asked for the injection was due to pains in my femurs. I believed the medication would relieve those pains, but as it turns out, one of the SE of xgeva apart from ONJ is the sudden breaking of femurs with no apparent warning. Maybe, they thought my pains were a preamble to an imminent disaster....but, as it turned out, I've been pain and worry free since.
Exbrnxgrl, I've always wondered why it's not standard procedure, when we are diagnosed with bc, to run a pet scan. That would immediately determine the stage and preclude millions of women from undergoing painful treatments, such as massive chemotherapy, radiation, mastectomies and 10 years of hormonal therapies...to only find out a few months, or years later that they had MBC all along....why not get that extremely important part of the equation out of the way? Just curious...I've pondered without success on this... but I can't figure out their reasoning, although I'm sure it's a good one.
When I was first diagnosed stage one at Mt Sinai Beth Israel, in NYC, they first scheduled an appointment with the breast surgeon that told me the surgery would follow the 40 radiation treatments and chemotherapy to shrink the 2cm tumor (ILC mind you) before he could cut it out...
When I told him that I had no intention to undergo ANY therapy but surgery, he ordered a pet scan that showed I was already stage 4 with Mets to the bones...that put a quick end to all talks about surgery, radiations, or chemotherapy, just a $20 a month prescription for femara, that I took only every other day to reduce the SE, and that totally wiped out the 2cm tumor palpable under my skin in less than 3 months.....it hasn't been back since....but after femara everything targeted for my specific genetics failed miserably and like many others, I've progressed since under the best of care....but let me tell you I don't envy what the women with stage 1 and 2 have to go through....no sirrybob!
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I had 1 xgeva injection and ended up with onj. Its awful. So I can never get any bone strengtheners again.
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Mel, I’m so sorry to read about your story...what do you have to do to deal with ONJ. Is there some sort of procedure you’re following for healing the wound? Does it ever go away?
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Interesting discussion about XGeva. Nicole, you are totally right that it is a balance of the benefits and risks and that someone with minimal bone involvement may not have a benefit that outweighs the risks, while someone with extensive bone mets may receive significant benefit from XGeva.
I have researched XGeva extensively, based on how bad my bone mets were when diagnosed with mets. Here is what I know: XGeva is a RANK-L inhibitor. The process of bone remodeling involves breaking down old bone (resorption) and building up new bone. Bone mets cause that remodeling cycle to go out of whack/haywire and either break down too much bone (in lytic lesions) or build up too much bone (in blastic lesions). In either case, the bone quality is poor. Lytic lesions result in weakened, frail bone lacking sufficient mineral density while blastic lesions may result in brittle bone and in some cases, palpably larger areas of bone. Most bone mets are mixed but predominantly lytic. The RANK-L inhibitor inhibits the bone breakdown / resorption process and increases bone mineral density (targeting only lytic bone mets).
There has been at least one trial (ABCSG-18) that has shown a statistically significant delay in bone metastasis from XGeva (but not any of the bisphosphonates as far as I am aware). However, the studies on XGeva in this area are mixed and other studies have shown no benefit in disease-free survival. However, these trials were done in the adjuvant setting to prevent bone mets and not in the metastatic setting where bone mets already exist.
XGeva is not a substance that fills in the weakened/missing bone areas like cement. That sounds like the substances used in kypoplasty and vertebroplasty procedures where a cement-like substance is injected into the area to fill the holes or void where the bone mets have caused a compression fracture or broken down the bones to where the vertebrae is no longer stable and at risk for fracture. Usually that is given in the spine to address loss of height in the vertebrae or other vertebral deformities which may impinge on nerves or push against/compromise the spinal chord. That cement-like substance could lead to secondary fracture over time in that it doesn't budge and puts more stress on the surrounding bone to take the impact of any movement, strain or impact. The bones in people having that procedure would usually already be weak to begin with, due to the cancer itself degrading the bone and the various treatments weakening bones such as AIs.
Over time, XGeva does lower the quality of the bone because the bone does not have a chance to fully go through the bone remodeling process, specifically the part of the cycle where new bone is developed. Due to this, XGeva does have a long-term risk of femur fractures specifically (which sometimes even go unnoticed for periods of time) but I haven't heard of it being associated with fracture of bone that doesn't bear large amounts of weight, such as the neck. Also, there is an increased risk of spinal fractures after stopping XGeva but that is thought to be a "rebound" effect as the bone mineral density will decrease once stopped because the bones will be losing the protective effect of XGeva. That risk of spinal fracture is not thought to be caused by the XGeva itself but only by its discontinuation.
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JFL thank you! Fabulous explanation!! 💜💜
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JFL,
That was a great explaination. I had to stop xgeva because of being diagnosed with ONJ. I think xgeva was helping me with my bone mets. I may go back on it in the future, if possible.
Frisky,
For your ONJ question. I know you didn't ask me but I've been doing a lot of research on that since diagnosed. The dead bone will eventually break away from the good bone and skin will form around the good bone. The body will push the dead bone out, similar to a splinter, or the Oral Surgeon will remove it. Other women have posted that process can take several months to over a year. The problems occur when it gets infected or spreads.
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yes, that was a great explanation, thank you for sharing
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JFL good explanation thanks..but that is not what the girl on FB said her doctor said...and I didn't say its cement...I know that stuff that they use that you were referring to. I said her Doctor said "THINK of it LIKE CEMENT"...the medication XGEVA will do that over time in a similar fashion to cement it will eventually crumble or fall apart, breakdown...
You should go on facebook to the Metastatic Breast Cancer page and google it and see what their doctors are saying...it's interesting.
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Simone, that process you describe, I guess that is essentially what my oral surgeon described as "sequestration". I knew it was not uncommon in ONJ and one presentation of ONJ but wasn't thinking about it as THE process of ONJ. Very interesting.
Nicole, that does make sense now the comment about the treated bone being like cement in that it will eventually crumble, break apart, etc. Thanks for elaborating on that. I might get too freaked out if I read that Facebook page
I am sure I am in all "high risk" categories at this point. I have been on XGeva for 5 years now and not a good candidate for eliminating it completely. I am kind of between a rock and a hard place with XGeva. 0 -
JFL...you don't really have a choice I would be doing the same exact thing as you...
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I had to remove myself from Facebook when I was first diagnosed in 2017 because the things that people were writing caused me wayyyyy to much anxiety and stress. I shut down my Facebook account in my therapists office. It was so freeing!!!
I think it’s good to be informed, of course!
I have recently popped back in on social media because I also have a business page on both FB and IG. I wanted to check in on those. It has been fun to pop in and see what’s happening. Nothing much has changed. I do belong to two MBC groups but I get the feeling there’s a lot of them. So far I haven’t seen the posts you are referring to Nicole. But then again, I am not very much limiting my engagement on those sites. They drain my soul!!!
Love
Philly
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I never had facebook till a few months ago...I got it because there is so much information for the alternative protocols I am following. I only use it for cancer related things...and the marketplace.
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wow Nicole that’s really amazing that you avoided social media for soooooo long!!! 😂😂😂😂
I really don’t like spending toO much time on my phone or on the computer, and FB’s formulation that is known to make people addicted to it absolutely works on my malleable mind. So I need to avoid it :-)
But if it a helpful resource for others than that’s great! For me, it was like a slow and painful torture that kept sucking me back in every hour of every day.
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Due to my husbands job in the military we never had it. He actually had to do some digging for information with his command about me even getting one now but I have to say...I made the decision not to make it personal like with family, friends etc...I have like a limited number of friends and most of them are just my nieces and nephews just so I could get approved for the Marketplace bc if you have NO friends you cannot get approved..its too silly. It has been a blessing though for cancer information especially for the Jane McLelland protocol.
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I was diagnosed June 2011. Started Zometa monthly, year 2 every 2 months, year 3 every 3 months. Insurance denied xgeva. 2014, the pain started. My fault is not complaining enough. It would come and go in my left jaw. I assumed it was broken tooth as it felt sharp.I knew I shouldn't have dental work. I was terrified to stop treatment so for many months I did not complain. 2015 After a blown iv during an infusion and the after effects I was prescribed a pain med. I then realized how much pain I had been dealing with. It was so wonderful to be painfree that I made a dental consultation to help decide about pausing treatment to have the tooth worked on. After 4 dentists viewing my mouth(bad sign!) I was told I had an exposed mandible and that it was beyond their practice scope, with a refer to an oral surgeon. I Still hadnt put it together as a side effect. Met with first oral surgeon, was given another referral for a specialist. Then I happened to mention to oncologist. Five oncology staff viewing my mouth with my permission as a teaching moment. Zometa was immediately stopped. Met with oral surgeon, had to wait 3 months for FIRST surgery. The bone had fractured, splintered, and ate away the interior of my mouth, leaving a spot where you could see a bit of bone sticking through, what I thought was the broken tooth. I have had 3 surgeries to remove dead bone. The hole has healed over finally and now 3 years post last surgery I hope it is behind me. I did also have to have my eye socket bone operated on, bone deposits were causing my eye to bulge. It still does slightly and my face at least to me no longer matches as my left side is different from right.The official diagnosis was biophosphate related osteonecrosis. Definitely not a rare result. The specialist had pamphlets and statistics. He said from his experience, though it provides much business, he was against the treatments. But he hasn't been told his life span would be limited by cancer. When everyone asks why I am not angry over my treatment, it is hard to explain why I wouldn't do anything differently. I am coming up on 9 years despite a jerk surgeon estimating 2. Who can say if the extra treatment, while causing pain and permanent effects, saved my life or not?
My learning experience, even my onc lecturing me as to the same, be more vocal about anything different, causing pain, or not. When I switched practices because of a move and needing more specialists (mass behind eye),( sinus needed rebuilt) my much loved onc told me I needed to complain more, no need to be a martyr. (Wince). So now I do and boy do I get tested often.
My other learning experience, fight the frigging insurance denials. Maybe xgeva would be better?
The saddest thing about this disease is that it so often feels like treatments are subject to a protocol approach when everyone's disease is so personal.
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I just got my first Zometa infusion on 2/5 and today I feel like crap. It sort of feels flu like with headache and fatigue and a really sore throat. It is that season of course, so who's to say I haven't picked up a seasonal bug? I just think the timing window sounds about right and the symptoms fit the Zometa side effects. I was initially on Xgeva but my insurance denied it and denied the appeal because I had not trialed and "failed" on the Zometa. I'm thinking about calling on Monday and asking to stop all of it. I have a met in my right femoral neck that is large and one on T8 that is a bit painful. The met in the sacrum I don't notice at all. I've been doing more reading on both the Zometa and Xgeva and am really having some second thoughts about needing this. Definitely worth a consult with my doctor. Anyone else have a flu-like or general blah feeling after Zometa? How long does it last?
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