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

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  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    Cowgal: Unfortunately I didn't question my MO where she received the data but mentioned the efficacy is the same 30 vs 90 days. I was just happy to go to quarterly injections. Afterwards like you I didn't see this information posted on Xgeva website.. Hence I was curious if other folks heard of the same...

  • Bliss58
    Bliss58 Member Posts: 938
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    I had Xgeva shots monthly for a year when MO moved me to quarterly shots. I didn't ask her why, but just figured that was standard of care.


  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    I would love to switch to quarterly, but my MO wants to keep the monthly schedule for now. Shot #3 is this Friday.

  • sondraf
    sondraf Member Posts: 1,605
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    I got a whopper of a bruise this month from the shot. Just below the site is also really itchy for some reason. It was in the tummy as usual but everything seems swollen ans awkward compared to past months. This is shot 4 for me.

  • iwrite
    iwrite Member Posts: 746
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    I've been getting Xgeva every 3 months for the past 3 years...It was monthly for a year before that. I'm thinking about asking to switch to Prolia which is a lower dose, just to reduce the potential jaw issues.

    Has anyone done that?

  • candy-678
    candy-678 Member Posts: 4,104
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    Question for the Xgeva group---- Do you all get Dexa scans (bone density study)? I had one 2 1/2 years ago and PCP mentioned rechecking it. I can understand with the Lupron and Letrozole (chemical menopause) that bone density may be affected. But I use Xgeva for the bone mets. Wouldn't that keep my bones stronger---no osteoporosis? Do I need the bone density study? Just thought I would ask this group.

  • cowgal
    cowgal Member Posts: 625
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    Candy, I asked my MO if I would need to do bone scans and he said no since I'm on XGEVA.

  • Bliss58
    Bliss58 Member Posts: 938
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    Candy, it's been 2.5 yrs since I've had a dexa scan, too. I asked about a scan the 3rd yr after diagnosis and MO didn't think I needed one bc I'd already had two and she said that's what the Xgeva's for, but I told her I'd like to know it's really working. I had the scan and I was fine. One of my last visits with her though she mentioned how long it had been since my last dexa and we should repeat. I'm guessing she thinks it only needs to be done every 2-3 years. I think I'll ask for clarification when I see her on the 19th.

  • gailmary
    gailmary Member Posts: 436
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    How would the dr treat you differently if bone density showed weaker bones? Stop cancer treatment? Stop best bone treatment? Doesn't make sense to me to have a dexa scan. Money for the hospital is all.

  • Vevs
    Vevs Member Posts: 81
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    I have been on Xgeva for three years, initially every month and now every three months. I have always had mild side effects but on Wednesday, within 5 hours of treatment I became really unwell. Terrible lower back pain and high fever, joint pain and flu symptoms that have made me so unwell that I’ve been confined to bed. I am crying tonight as I feel so unwell, I have a high temperature,101.8, fever, chills and a terrible base of skull headache. For the past 6 months I have also had really bad stomach issues. These are even worse since Wednesday. It can’t possibly be a coincidence as the way I’m feeling right now makes me feel As if I have been poisoned. I am panicking and can’t stop crying. Has anyone ever experienced this please? I feel as if my body has given up on me and I’m so upset. Please could anyone help? I have had the flu vaccine so it’s unlikely to be flu but this is just how it feels. How long will it last and is this possible as a build of of Xgeva in my system. Please can anyone help? I am desperately ill

  • JACK5IE
    JACK5IE Member Posts: 654
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    Vevs, I have never had that issue from the Xgeva. Even though you received the flu shot, you can still get another strain of the flu (there are so many). My advice to you is to call your doctor right away and let them know how you are feeling. Feel better soon!

  • Vevs
    Vevs Member Posts: 81
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    thank you so much for answering. I will go and see my Dr tomorrow. I’m just terrified of being ill in case it’s cancer related and can’t see the woods from the trees when I’m ill

  • Bliss58
    Bliss58 Member Posts: 938
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    Vevs, I see it's been a couple weeks since you posted, but how are you doing? Was it the flu or something else? Really hope you are feeling better. Hugs.

  • sondraf
    sondraf Member Posts: 1,605
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    I STILL have the bruise from last month's injection - hoping today's won't be as bad OR that it won't itch and feel so tender for a week after. Actually this month will be my fourth shot.


  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Hope your shot goes better this time. My fourth shot is next week.

  • sondraf
    sondraf Member Posts: 1,605
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    Much better! No bruise and no itch.

    I got the usual wobbly legs afterwards for about 12 hours and was exhausted by evening, but feeling great this morning.

  • cowgal
    cowgal Member Posts: 625
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    I have been having pain in my lower back, my rear end and it goes down into one of my legs. It appeared after I had my first XGEVA shot and disappeared for a while but returned this month. I am pretty sure it is from the XGEVA as I was not on Faslodex or Ibrance yet when it first started. I kept thinking it was a muscle and today I had one of those "ah ha" moments and I am thinking that it might be sciatica. I have never had sciatica before but I did see that it is one of the side effects of XGEVA. I found some online exercises for sciatica to try and I guess if those don't fix it, then it is more likely a muscle. Has anyone else had sciatica for a side effect and if so do you have any tips?

  • sondraf
    sondraf Member Posts: 1,605
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    YES. I get what I call 'the wobblies' either right after the injection or perhaps a day or two later. I still get really awful pain in my lower back, mostly in the area where in the past I herniated a disc. It also makes the existing neuropathy from that injury in my toe flare, and some light sciatica, mostly from my SI joints into my hips.

    The worst takes a day to pass but some pain tends to linger in that bad spot. Its a really weird pain too - not sharp, not burning, just kinda wrong. Now that you mention it, this all kicked off when I started rads and that was when they had thrown some Xgeva into me before I started I/L. I am off the Xgeva for three months now due to Covid, so I will see how I feel in May.

    For sciatica, I do nerve flossing for my toe, which sounds really creepy but its not that big a deal. There are different variations - have a look on YouTube, but I do the sitting version where I stick my leg out front and then ease my head back. then lower leg and lower the head. Cat-cow yoga position also counts as one I believe and 5 weeks ago I was having mad pain on the bad side, but the PT worked with me to do a modification so I could get it moving. I can do it normal now and the pain has lessened considerably.

    I also have been having a few years worth of trouble with super tight illipsoas and piriformis muscles, so I do a few stretching actions in the evening as well - typically pigeon pose stretch and a front quad stretch. I notice if I dont keep up with them (and some strengthening exercises too for my hips), so its more or less incorporated into my daily routine now.

  • cowgal
    cowgal Member Posts: 625
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    Thank you Sondra for the tips! I did look up the flossing on YouTube and found one for sciatica and have started doing that yesterday. I asked my oncology nurse about sciatica from the XGEVA when I had to call her about something else yesterday and she said that no one had ever mentioned that side effect to her. I wonder if more people get it and blame it on something else because it seems odd to have that side effect from a bone strengthener that is injected in the arm.

  • sondraf
    sondraf Member Posts: 1,605
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    I've raised it multiple times and they looked at me like I had two heads. I finally gave up and found a PT to help solve the problem. They KNOW I have spinal stenosis, its on my scans and charts, but its oncology - if it ain't cancer, they are kinda at a loss :D

    The only other thing it could be is my zoladex injection to stop the ovulation, which I normally get at the same time. Ill know from Friday if that is the other factor, but I am almost positive its the Xgeva.

    Glad you found something that could maybe help!

  • cowgal
    cowgal Member Posts: 625
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    I am sorry it is so hard to get our medical people to realize that this IS a known side effect. I start thinking that the exercises are working and then as the day goes on it gets worse even though I have been doing several exercises for it multiple times throughout the day. My husband feels so bad that I hurt so much and I think I need to get this taken care of for my pain and so my husband can relax as well. I just took some Tylenol to see if that can help at all. I have to go to my MO's outreach office Monday for my monthly XGEVA and Faslodex shots (I live in a rural area and my MO is actually 4 hours away but the outreach office is just 25 miles). I think that if this has not improved, I will let the medical oncologist nurse know that I need to have her ask my MO what I need to do for it. I think I would be getting along fairly well side effect wise if I could get this under control. They may tell me that I have to go to my general practitioner for help, which I hope not because that is one more place I would have to go in amidst this COVID-19 situation.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    I had severe sciatica before cancer. After active treatment I was able to focus on rehabbing myself with postural alignment exercises and nerve flossing. I found some common stretches like pigeon pose made my sciatica worse. So, if anything makes your pain worse, I recommend stopping it. Also, be careful with nerve flossing. Since your nerve is already inflamed, nerve flossing should be done slowly and gently. Stop if it increases pain. Give the nerve time to rest. I used to be on several meds for sciatica, but now I no longer take any. I still have minor flare-ups when I sit too long.

  • sondraf
    sondraf Member Posts: 1,605
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    Yes - I should have noted that the PT instructions for flossing on the paper right in front of my face say 'stop if discomfort'. Slow and easy. I did 2 or 3 per day (two or three of the motions, not times) when the toe was really flaring, and didn't do it some days at all when it was too painful.

    Nerve pain is frustrating and really horrible, but as Serenity said, there are some drug options to help manage if you need to right now. I was put on amitriptyline on a very low dose when my L5/S1 blew apart to help manage/calm the nerve pain while I healed. Its an old drug so not that expensive and it worked for the short time I needed it. My GP ordered that, so I wonder if it would be worth talking to someone other than oncology?


  • cowgal
    cowgal Member Posts: 625
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    Thank you Serenity and Sondra. Good to know.

  • sondraf
    sondraf Member Posts: 1,605
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    Cowgal - After my injection (Zoladex) and new cycle start on Friday, no problems this month with the wobblies, and far less of that bone/nerve pain. Now I had a brand change (again) in letrozole and that could be contributing as well, but overall my pelvis and hips and lower back feel better than they have in about a year. If this continues and I go back to pain at the next Xgevainjection in June, Im going to ask to go to quarterly rather than monthly, which I think they do after a year anyway.

  • cowgal
    cowgal Member Posts: 625
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    SondraF - I am glad that you are doing better this month! I think I started XGEVA the end of September or first part of October 2019 so I have a little bit until I make a year but hopefully, this will go away like it did in January. I am experiencing some inflammation pretty much all over and I have lymphedema from my first time dealing with breast cancer in 2010 and I think that the inflammation could be aggravating my sciatica. I really need to get to my lymphedema therapist once all of my swelling from radiation goes down and when they start seeing patients there again. I assume my lymphedema therapist is closed right now at least to people that are somewhat managed like myself and if not, I am not sure that I want to travel there as our region is just really starting to explode with Corona virus patients now. I plan to talk to my MO in mid-May at my appointment about my side effects if they are still bothering me and have him prescribe a visit to my lymphedema therapist maybe in June. I did just get my monthly XGEVA and Faslodex shots this morning, so hopefully that won't make the sciatica any worse.



  • cowgal
    cowgal Member Posts: 625
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    I did a search and it looked like some ladies were taking Claritin prior to getting their monthly XGEVA shots and even to help with the Faslodex but these were all posts that were 2 or more years ago. Is anyone still doing this to lessen side effects?

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
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    Hi all. I have ben looking back through this thread and thinking maybe it's "just me" with xgeva. I have been on verzenio/letrozole for about a year, which has really controlled my liver mets well, then up pops a bone met on L2 and likely another coming up (by MRI) on L1. I have stayed on verzenio for now, but switched to aromasin, and started faslodex (on every 2 week loading dose) and xgeva (1x/month). After the second shot of faslodex, I started feeling horrible - terrible fatigue, constant nausea, diarrhea at night (and I am already taking lomotil so supplement with immodium), pain across my UPPER back, heaviness in my legs, mild hip achiness, and tenderness around where I know the met is. I thought maybe the faslodex, but these seem to have overlapping side effects and seems more likely the xgeva? I just feel awful and don't want to get out of bed or do anything except crawl into a hole and cry. Sleeping 10 plus hours a night when I can get it. Exercise doesn't seem to help through this one. I have 2 MOs (long story but lucky me) - my primary nearby and the other is my second opinion MO as he is further away but my original MO. My primary MO nearby is concerned and is not comfortable that these are all side effects (upper back pain as example) but some other process going on (spread?). Second opinion MO thinks side effects more likely and will probably start to diminish after second injection of xgeva. My CA27-29 is normal right now so some comfort there. Having that checked monthly now with bone mets. Just wondering if ANYONE out there has had this many issues on xgeva? I have an actual exam with my MO on May 5 as they lessen restrictions (COVID-19) here and I am going to get another PET scan on June 7 to see what's happening. Likely another MRI a couple weeks after the depending on PET results. Enough time to get past the loading dose of faslodex and get one more dose of xgeva. Thoughts from anyone? My poor husband has such a hard time seeing me like this and honestly it's hard getting through the days. Ned a light at end of this tunnel.

  • Kkmay
    Kkmay Member Posts: 89
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    Hi ladies

    I hope you are all doing well.

    My mom was prescribed XGEVA for her bone mets. I’m not sure if it can treat the bone mets? Or only strengthen the bones? Can it treat other mets to lungs and/or liver? She is TNBC btw.


  • sondraf
    sondraf Member Posts: 1,605
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    Kkmay - I was told its both to strengthen/grow new bone as well as try and keep other bone mets from forming. It won't cure but will help heal cancer-eaten areas that could be weak and in danger of fracture.