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XGEVA let's talk about the good and the side effects

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
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    Hi Bliss! Sorry I am just seeing your response/question. I am relatively new on these boards and did receive best birds manual maybe about 6 months ago? Not sure how long ago you received your copy? Maybe I misread the info but my MO agreed with me about the switch to every 3 months when I suggested it and that felt good to have less serious meds in my system each month! I am trying to think why aspirin would be not recommended. Maybe because it can thin the blood? Are you on blood thinners? Would you be open to taking Tylenol or Advil instead of aspirin?

    Vevs- sorry to hear about the stomach upset. That’s a bummer SE!!! I think there are a couple biphosphonates out there, maybe a different one would be better for you? Is the xygeva the only medication you are taking?

    Hugs to all!
    Brenda
  • Bliss58
    Bliss58 Member Posts: 938
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    Hi all. I haven't been back on here in some time obviously. Vevs, thanks for your input on half-life, but so sorry to hear about your gastro problems with Xgeva. I go for my next shot next Monday, July 31.

    Brenda, I got my copy of Bestbird's manual a couple of years ago, but I was on Zometa then, so I'll have to go back and re-read about Xgeva - which I've been meaning to do. I'll have to inquire with my MO when I next see her, too. The PA seemed to think the plan was monthly for at least a year, but then that was the plan for Zometa and MO switched me to every 3 mos. after monthly for 6 mos., so we'll see. Yeah, all I could think is the PA was concerned about blood thinning, but I'm not on blood thinners, so didn't make sense to me. She said, "well, it's like why they tell you to not take aspirin before surgery." Well, I know why they say that before surgery - blood thinning - and they don't want a patient to bleed to death. I didn't pursue it, but I should have asked her if Xgeva thins the blood and aspirin would increase it? I didn't because I didn't think she'd really know the answer. Anyway, I guess anything else is okay to take since the Chemo.care literature specifically mentioned aspirin only. I want to take aspirin though because I have several bottles that I got free in Safeway's Monopoly game, and I'm cheap! haha


  • Bliss58
    Bliss58 Member Posts: 938
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    Got my 2nd Xgeva shot on 7/31. I felt a bit queasy later in the day, but was okay by next morning. The first time I asked for the shot to be given slowly and had no SEs, but this time was a different nurse, and I didn't think to ask. Maybe that was the difference, so next one I'll ask for slow again and see if it helps. Hugs to the group.

  • Bliss58
    Bliss58 Member Posts: 938
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    I see no one's posted here since me last year, and in fact, I didn't follow up on my last post, but now I will. The fast injection the second time definitely caused my SEs. Since then, I have always asked for a slow injection and now it's in my chart, but that seems to make the difference as I have not experienced any nausea since that second one.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
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    Hi Bliss!

    Thanks for bumping this thread!

    I have so many ups and downs with Xgeva - I never know exactly how my body will react. I am getting shots quarterly now so they seem so far and in between!

    The shot before last the nurse (she was young and new to me) didn’t quite get it right and it hurt like a mother! And left a deep bruise for about 3 weeks :( I let them know, kindly, what had happened.

    Last Monday I had my most recent shot (+ the Lupron shot in butt) - no bruising, but I was knocked out for a couple days afterwards, slept like crazy. Also came down with a cold.

    That’s about all the excitement over here in this arena! I feel like yes the Xgeva burns going in but it’s fortunately over so quickly. It’s the aftermath of a couple of days of being wonky that’s always fun and weird!!!

    Love,

    Philly ❤️ ❤️

  • Bliss58
    Bliss58 Member Posts: 938
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    Latest scans were good, so now I'm going to quarterly Xgeva. The nurses take labs from my port. Now that I won't be doing this monthly, I may need to revisit having it removed, but I'm superstitious!

  • olma61
    olma61 Member Posts: 1,025
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    I've been getting XGEVA since I started treatment. When I was doing weekly taxol, I was getting it monthly. After six months, my doctor switched the XGEVA to every 6 weeks because I was now coming for infusions every 3rd week just for H&P. In November, after a clear scan, we switched to quarterly. But now....I had a bone met become active again so we're going to go back to doing XGEVA more often. She said "probably every 9 weeks" but I think I'm going to ask to go back to every 6 weeks if not monthly for awhile.

    As for side effects, I haven't experienced any. I've had dental work but not invasive dental work. Just fillings and a crown replaced. My dentist said fillings would not be a problem. The shot doesn't really hurt me going in but I'm good at dissociating when I'm being stuck. : ) Never noticed a burn.

    Lately, I have felt twinges in my jaw though. Not sure what it's about, my mouth is kind of a mess as I had to have three back teeth yanked (bridge failed) before chemo started and can't do anything to replace them yet due to XGEVA.

  • HLB
    HLB Member Posts: 740
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    Hello everyone, I've been on XGEVA every month for 7 years. Recently my oncologist was out and I saw a different one, who changed it to quarterly. Then I saw my regular oncologist and he didn't think that was such a good idea. I've never had a problem but I do worry about ONJ the longer I am on it. Do they even know what the effects are after 7 years? My oncologist said "do you think that's what been keeping you going all this time" ? Now I'm not quite sure what the best thing is to do. Just wondering what you all think who have experience with XGEVA for a long time. I know that onj is rare, but like everything else, if it happens it may as well be a hundred percent and that is one thing I do not want to happen! Thanks everyone!

  • dlb823
    dlb823 Member Posts: 2,701
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    HLB, my UCLA onc switched me to quarterly less than a year after I started Xgeva. At the time, I was on Ibrance, and having done the original Ibrance trials, she was concerned that quite a few of her trial patients who had been on Ibrance for 5+ yesrs were developing ONJ. She theorized that the constant low counts Ibrance causes might have something to do with it.

    Don't know if there's been any actual research since then, but I'm very happy with quarterly — bones very stable — and sometimes even go every 4 mos because it feels like enough

  • fredntan
    fredntan Member Posts: 237
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    Hi

    I did develope ONJ after being on Xgeva monthly in about the 3rd yr of treatment. I went through ONJ pretty much with not much medical intervention. Since there wasnt a protocol for the treatment of ONJ, there was little info out there. Doctors were hard to find. I am fortunate I was on Xgeva since its half life is 6 months i think.

    Here is about the best video I have found from the professor of oral surgery that wrote the text book on ONJ. It goes over possible reasons ONJ can start.

    https://www.youtube.com/watch?v=T154sGspn-M

    I started a FB group called Living with osteonecrosis of jaw- come join if you have it.

    people with Tori in the mouth are more prone to ONJ. I think mine was caused by the hard bite wings from dental xrays. Did you know they have padded ones? so much easier. we also theorize anything that breaks the mucous membrane of mouth can cause it. Like a sharp tortilla chip, or a hard candy, or even a fork.

    The ONJ was hard to get a diagnosis. I got 2 root canals before I figured it out. I had tiny bit of exposed bone on far left side of my jaw on the inside. there was mild nagging pain, with redness and swelling of tissues in back of jaw.

    It took 9 months for me to convince my oncologist I had to quit xgeva. And it took a little longer for me to find out about how important the prescription mouthwash chlorhexidine was. I was having painful cycles of infections every 6 weeks or so. In the video Dr Marx talks about the best antibiotics to treat this


    It took me 16 months to sequester or grow the dead bone off. It was smooth on one side. after it lifted off one evening it had spikes on it. and 2 days after that I saw a dental oncology specialist and said it was all good. I am seeing a oral surgeon today. I have to have my last molar pulled because it left the root exposed. I am really good at my dental care. cleanings quarterly. I had a pretty bad jaw infection few weeks ago due to that exposed root. Its almost 2 years since the dead bone lifted off.

    I advanced to the stage 4 mbc group 10-2013


    The rates of ONJ are found on there website. the rate is 3%.


  • HLB
    HLB Member Posts: 740
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    Thank you, Dlb and fredntan, for the good information! It's hard to know what the right thing to do is because I don't think I was expected to live this long. Seven yrs just seems like a lot to be on this every month even though I've had no problems. 

  • sandilee
    sandilee Member Posts: 436
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    I am another who developed ONJ, and it was about 7 years in. It has sort of resolved, but it was really difficult for about a year or so. Like fredntan, I also had a root canal, and then two extractions before I knew that my problem was the bone and not the teeth. Not fun.

    I like the suggestion go to quarterly, like the other onc suggested. At this point every month does seem like a lot, especially if it stays in our bodies for 6 months.

  • nicolerod
    nicolerod Member Posts: 2,877
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    Hi just wondering what ONJ is?? Sorry I am fairly new here and don't know what that means and I am about to start Xgeva next week.... what should I be on the look out for? I do currently have sensitive teeth but they are ok if I use sensitivity tooth paste...is the Xgeva gonna make them worse?

  • olma61
    olma61 Member Posts: 1,025
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    ONJ stands for osteonecrosis of the jaw. It's important not not to have invasive dental work when on xgeva because it can trigger ONJ. It’s a bone disease that causes the jaw to become infected

  • nicolerod
    nicolerod Member Posts: 2,877
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    Thank you Olma.

  • HLB
    HLB Member Posts: 740
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    Sandilee, I agree it's a lot for 7 years. My oncologist said "well, do you think maybe that's what kept you going all this time"? He says if something is working don't change it. He always finds a way to make me second guess myself. 

  • nicolerod
    nicolerod Member Posts: 2,877
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    So should I be worried about the ONJ even if I do not have dental work done? Or can you get this anyway? I feel like xgeva is sounding like a major risk more than a gain?

    Also...what about rejecting taking it all together, has anyone done that and does anyone know how bad NOT taking it could be?

    PS: I just had a dental cleaning and exam 3 weeks ago and the only issue i have is a crack on my last back tooth that has a filling. I didn't want to have it removed bc I had the tooth in front of it pulled years ago so then I would be missing 2 teeth (even though you cannot see them when I smile or anything) .

  • olma61
    olma61 Member Posts: 1,025
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    ONJ can happen even without getting dental work. Should you refuse it? Only you can make that decision after talking it over with your doctor. I am taking it. In my opinion, the benefit far outweighs the risk. ONJ will not kill me but cancer can. Remember, as with all these medications, only a small perce of patients actually experience the side effects.

  • JFL
    JFL Member Posts: 1,373
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    I am just in the beginning stages of ONJ after over 4 years. I was bounced around from dentist to endodontist #1 to endodontist #2 to oral surgeon as no one could figure out what is going on. I thought I had a small abscess on my gum from an infected tooth but my tooth is fine. It is now believed I have Stage 0 ONJ, an issue brewing underneath gums, not exposed and remaining relatively stable at this point, although none of the professionals can say for certain. One of the professionals said something about a small chip of bone starting to sequester itself (sever off). I haven't had invasive dental work since I started XGeva and I take impeccable care of my teeth. However, I now believe I 100% created this situation myself due to a recent, strange craving to chew ice, which is also treatment related. All of the various side effects are closing on on me from all angles! In the fall, I developed moderate - severe anemia on chemo. Out of nowhere, it caused me to have extreme cravings to chew ce. Weird because I have never been one to like ice or drink cold drinks. I prefer water at room temperature. Anyway, come to find out anemia causes ice cravings. Weird but true. The urge was irresistible and I am still fighting it as the cravings are still here although my anemia is only mild-moderate right now. Over a series of months, I came to a point where I was chewing cups and cups and cups of ice all day and thinking about ice constantly like a bizarre addiction. In hindsight, I am so mad at myself for causing this for something so seemingly trivial. I knew I was putting my teeth at risk for cracking (and did try to chew the ice gently if that is even possible :) ) but never thought this could cause ONJ. I did end up also having to have a few very old fillings replaced that chipped off a bit, likely from the ice, but I had no damage to my teeth themselves.

    Anyway, the oral surgeon explained to me that our jaws have a ton of bone turnover - they are the most active bones in our bodies that are constantly remodeling. Small tears in the bone are a regular occurrence from jaw use (like we get small tears in our muscles when we work out really hard). In normal bone, the bone is remodeled and comes out stronger on the other side. Due to XGeva, our bones don't go through that remodeling process and we are left with bone that has a hard time healing itself, is not great quality and has poor blood supply. When bone remains unhealed and has poor blood supply, it becomes at risk to infection and then ONJ develops.

    Here is what I learned from my own saga:

    - Take care of being too harsh on your teeth or gums in any respect, not just invasive dental work. Be careful and try to minimize chewing very hard things on a frequent basis and repeated trauma/unusual pressure on the teeth and jaws.

    - Take impeccable care of your teeth and mouth. Most if not all of the bacteria that infects the jawbone creeps in from the dental area via the mouth/teeth/gums/pockets in gums. Beyond that, taking care of one's mouth will reduce or prevent the need for invasive dental work which is the highest risk factor for exposing the bone to bacteria/developing ONJ. Whereas, in healthy bone, the bacteria is quickly swept away by our lymphatic and vascular system, with XGeva, there is not enough blood supply to eliminate all the bacteria.

    - Premedicate with antibiotics if you do need to have dental work, which can significantly reduce the risk of ONJ.


  • olma61
    olma61 Member Posts: 1,025
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    JFL - Thanks so much for this detailed and informative post. Sorry you are experiencing possible ONJ!

    For Nicole or anyone considering the side effects of Xgeva, here’s an article from BCO which states Zometa is less likely to cause ONJ than Xgeva (but can still cause it). Zometa is an infusion so that’s something to consider, too. And there’s another article which states Xgeva may be more effective for women with bone mets. Quite a few things to consider and discuss here


    https://www.breastcancer.org/research-news/20111202


    https://www.breastcancer.org/research-news/20120821






  • nicolerod
    nicolerod Member Posts: 2,877
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    Thanks for that info...does anyone know if taking a lower dose or not as frequent of either drug (Zomenta/Xgeva) could be an option and if it may help?

    I just read the article...and I may ask to wait a bit to start the med it also can cause urinary infections. After my first breast cancer I suffered for 2 years with a recurrent UTI and eventually sought a nurse practitioner in D.C. who had me catherize (my husband did it for me) the antibiotics into my bladder. It took 14 days and 2 rounds of it but it worked and I was UTI free for almost 2 years. I have Lyme Disease and interstitial cystitis (which she believes there is a link between Lyme causesing the interstitial cystitis). So I am very torn now.

    :(

  • olma61
    olma61 Member Posts: 1,025
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    I do not know about dosage but as far as frequency of Xgeva shots - it seems like a lot of Oncs are giving it monthly for a year and then tapering it off. It is definitely something you can talk to your doctor about.

    In my case, I got it monthly for 6 months while I was on weekly Taxol.

    After that was finished, I was only coming to the infusion center every three weeks for Herceptin & Perjeta, so the doctor switched me to Xgeva every 6 weeks instead of monthly.

    Then, six months later (12 months of Xgeva total at that point) she put me on quarterly Xgeva shots.

    That was November 2018 - but in April I had a pet scan and a spine met is active again. We are going to be switching back to Xgeva every six weeks.

    I do think the reason many docs are lessening the frequency after a period of time is to avoid ONJ or other side effects.

  • JFL
    JFL Member Posts: 1,373
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    Olma, thanks for posting the links about XGeva v. Zometa. In all of my research over my latest pre-ONJ issue, I did learn that Zometa has an extremely long half life - like over 10 years, while XGeva has a comparatively short half life of 20-something days. That article seemed to be speculating that taking a break from XGeva to get needed invasive dental work may have a more meaningful impact than taking a break from Zometa. No hard data on that at this point though.

    NicoleRod, you should definitely ask your MO about options when it comes to taking a lower dose or receiving the injection less frequently. Bone mets should be the primary concern although they are not the only concern and this is all a balancing act. With respect to frequency, there was a trial a while back that showed that reducing the dose of Zometa to every 12 weeks after 2 years at a 3-4 week dose did not make a difference as far as progression of bone mets was concerned in Zometa but did lower ONJ risk. Many MOs follow that plan now, even for XGeva, although there hasn't been published data about whether the same result occurs with XGeva. There are questions about whether the shorter half-life of XGeva could mean it needs to be continued at the 3-4 or so week dosing frequency. My MO lowered my XGeva after 2 years to every 12 weeks, sometimes longer. In the first two years, I would get XGeva every 3, 4 or 6 weeks based on my treatment schedule for my other mets treatments and when I happened to be coming in for an appointment. My MO didn't seem to be too concerned with going 6 weeks rather than 3-4 even though I had extensive bone mets practically everywhere in my body when diagnosed.

    Another long-term risk of XGeva and Zometa is femur fracture but it is less common and usually presents itself after many years on XGeva. Again, seems to be due to the bone being poor quality and somewhat brittle and having a difficult time healing from small tears/cracks.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
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    hi! Does anyone have any thoughts as to why an Xygeva injection can hurt more sometimes than others?

    Had my 3-month shot yesterday (back of upper arm) in the usual spot and I was howling in pain!!

    Once it was done then it was okay, a little sore now.

    Does it need to be warmed up?

    Does the injection need to happen more slowly? Or quickly?

  • Andi67
    Andi67 Member Posts: 314
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    Hi Philly! I just got my quarterly Xgeva shot last week. I always ask them to warm it up, and to go very slowly. I think I am somewhat of a wimp, but I have definitely noticed that it burns if chilled and if the nurse goes too fast. This last nurse went SO slowly - I seriously think it took her about five minutes - sort of overkill, but no burning, pain, bruising, etc.

    I was on XGeva every six weeks for about 5 years, and then switched to quarterly.

    Bliss - I have an appointment to get my port removed on the 15th, but I am freaking out about it. I feel like I am going to jinx everything if I do it! Mine is in my arm, an and at the risk of sounding totally vain (which I can be, even under these circumstances) I am really tired of it.. it's been seven years. But, my anxiety may get the best of me and I might back out.

    XO

    Andi

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
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    Hi Andi!

    Thank you for your input. I am going to definitely ask next time about the warming up and going slowly. The two times I have had a new nurse (usually its a nurse named Barbara), they have both been the most painful shots. I think they bring in these other nurses to do the shots, when Barbara is on vacation or something...because it has only happened twice. I will discuss with Barbara ;)

    I am on quarterly shots too! Started out monthly, and then thanks to BestBirds MBC reference guide, I learned I could do it quarterly. I don't know why my MO hadn't suggested it first, but I beat him to the punch. It sometimes seems like we have keep ourselves MORE informed than our MOs and nurses, and hence why they call breast cancer treatment "patient-centered" all the time!

  • Bliss58
    Bliss58 Member Posts: 938
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    Philly, I start quarterly Xgeva Aug. 1 after doing it monthly for a year. My MO brought up moving me to quarterly before I could. I don't think my nurses warm the Xgeva, but I have asked them to inject slowly because of suggestions from ladies on BCO. The first time everything went just fine, but the 2nd time there was a sub nurse and she injected quickly before I could tell her to go slow. It didn't burn any more than usual, but I was nauseous for 2+ hrs. afterwards. Ever since I've made sure to request slow injection, which is now in my chart, and have had no problems. For me it does burn slightly, but tolerable and just for the first couple seconds.

    Andi, my port's in my chest and sometimes it bugs me, and I'm torn about taking it out. I understand your anxiousness because I am superstitious. Most of my clothes hide it, but when I go swimming, well, there it is! My MO suggested again removing it since I won't be doing monthly Xgeva, the nurses always did labs prior, and now I'll need to go for "special" flushes. Best wishes!


  • Bliss58
    Bliss58 Member Posts: 938
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    Just popping in to share some info on the Amgen Co-pay card if you don't know about it; I didn't. When I lost my job in April, I had just reached my maximum out of pocket with insurance. As of July 1, I'm on my husband's high-deductible plan, so I'm starting all over with deductible, etc. A couple days before my Xgeva shot Aug. 1, the hospital financial office calls to say my share is $3500+ and they expect me to have that at the appt.; I laughed! Ultimately she told me I didn't need to pay anything since I have an oncology dx. She didn't see that first and that's why I'm getting Xgeva? Anyway, she did inform me that Amgen may help me with the co-pay. I went through the online application and was rejected at the end, so I called and found out I already had an account with Amgen for Neulasta in 2015 when I had chemo. MO's office signed me up, but I didn't realize Neulasta is from Amgen. I think they will pay for up to two drugs they manufacture. Now, I have a MasterCard for $10,000 annually to pay for the drug, and I'm very grateful! No income requirements, just need to have insurance, so go to their website if you need financial assistance for Xgeva.

  • belll
    belll Member Posts: 24
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    Deanna, just read the article you shared in Dec 2015 about peanut butter - thank you SO much for posting that! I've been trying hard to eat a clean diet but have been eating a LOT of peanut butter. Had no idea that peanuts carried this risk. Seems like a good thing to avoid so will now switch to other nut butters. Thanks again for the info & I hope you are doing well.

    Lisa

  • nicolerod
    nicolerod Member Posts: 2,877
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    Belll what article did you see about peanut butter???