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

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  • Bliss58
    Bliss58 Member Posts: 938
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    Hi Lisa and welcome to the thread. Deanna was always a wealth of information all over BCO, but thought I'd share with you she recently passed in July. I never before saw the article you found she posted about peanut butter. It is an interesting study, but does go on to say more research needed to be done. I love peanut butter, too, but personally, I think consuming some won't make a difference. I'm from the moderation school of thought, and while I try to eat better with more fruits and vegetables, I generally enjoy whatever I want, just not in huge quantities.

  • Bliss58
    Bliss58 Member Posts: 938
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    Hi NicoleRod. I believe the abstract Belll referenced is in a posting on Page 2.

    Deanna also posted about iron which I hadn't seen previously either. I think that's an interesting study, too, because I used to take iron supplements that may very well have fueled my bc. From what I read, it appeared the iron supplements may be more of a risk than consuming iron-rich foods.


  • nicolerod
    nicolerod Member Posts: 2,877
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    Bliss thanks for that info. I won't be frequenting Xgeva thread anymore..that one time I got it and got hives bad was enough for my MO to say..NOPE next time...Zomenta. Wish me luck! :) And I move Sept 1st and get a new MO.

  • Bliss58
    Bliss58 Member Posts: 938
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    NicoleRod, sorry to hear of your reaction to Xgeva, but hope you have better luck with Zometa. When I took it, I didn't have any problems, but just be sure to hydrate. Wishing you luck with the move and new MO, too!

  • nicolerod
    nicolerod Member Posts: 2,877
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    Thanks so much Bliss!

  • 3-16-2011
    3-16-2011 Member Posts: 279
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    I have had nasty migraines with xgeva, usually starting 24 hours after the shot and lasting up to 3 days. My doctor has worked with me, trying steroids orally and infusion with limited results. I saw the arnp last month and she suggested tordal. Wow, no headache at all. Just thought I would share a good result.

  • 3-16-2011
    3-16-2011 Member Posts: 279
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    I have had nasty migraines with xgeva, usually starting 24 hours after the shot and lasting up to 3 days. My doctor has worked with me, trying steroids orally and infusion with limited results. I saw the arnp last month and she suggested tordal. Wow, no headache at all. Just thought I would share a good result.

  • Bliss58
    Bliss58 Member Posts: 938
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    3-16-2011, glad you found something for relief from the Xgeva-caused migranes. Thanks for sharing.

  • gailmary
    gailmary Member Posts: 436
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    Hello everyone. Anyone? This thread has been quiet. I dont doubt the benefits of the drug. I found it interesting though that much of the chatter has been about dosing frequency or onj. I'm wondering about other side effects.

    I've been taking it 2 yrs now. My dr plans to reduce to every 12 weeks starting next month. I'm good with that. I never would have said it bothered me in any way but understand its expected that is adequate for continued protection. I'm also on faslodex. Again no complaints. Until recently. The last faslodex 3 weeks ago is still hurting. Feels like a burn.

    I've always been a big insomniac and its better now since quitting letrezole. Still some issues with that and I say they are just cancer symptoms. 🙂 but man the aches and pains are crazy. Who's to say which drug its from? . I'm wondering if it is an accumulation of the drugs and how much worse it could get. Did anyone else notice that? Can I expect and hope with less xgeva that my pain levels will improve?

    Thanks. I sure appreciate the collective wisdom of this caring supportive group.

    GAILMARY


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


    Oh wow you stopped taking letrozole??? That sounds like a dream come true for me. I have so many side effects from that drug. I do wonder if they’d eventually calm down/go away if I stopped taking it, but I am scared to.


    I had the Xygeva injection monthly for one year and then switched to every three months.


    I am with you that I can’t tell exactly which drug is causing which side effect, but I do think early on, as I was getting used to the medications, I would get flu-like symptoms after the Xygeva shot for about 5-7 days...fever, aches and pains, and migraine headaches (which also could be from the Lupron injections I receive monthly).

    I do agree that there is an accumulation of the drugs in our bodies and that it will take time to “clear” them out of our systems, if we stop. My MO believes that stopping letrozole for 2 weeks will show us if the symptoms I am having are due to that drug. However, I have read otherwise on these boards, that many who have stopped the AI drugs still have lingering symptoms even after they stop. That some of their symptoms lessen, but others don’t seem to go away. So I have no idea!

    I am glad you are having less insomnia! That could def be a side effect of the letrozole. I was having insomnia pretty severely for a long time after my diagnosis, but now it seems like I can’t stop sleeping.

  • gailmary
    gailmary Member Posts: 436
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    Oh my God, Miss Philly. Can't stop sleeping is a dream to me. So for my details, I had taken letrezole once before for three and a half years. The insomnia got quite severe so I stopped it. But when the cancer metastasized then I started taking it again with the faslodex and the xgeva. After almost two years on that combination the doctor said yes it's causing me insomnia. 2 years is plenty, I can stop the letrozole. But he also said that I could take another aromatase inhibitor later if I chose because it did not fail me. in other words I did not have progression while I was on it. He's fine with me just doing the faslodex and xgeva now. I need to figure out what I can do about these aches and pains I have. I do get my exercuse in the garden nearly daily and stretching helps but I'm so sore I have trouble sleeping. And when I say insomnia isn't as troubling I mean I still need something. I take a wonderful herbal supplement called Deep Sleep. I would take melatonin but it keeps me awake and the restless legs are worse. Melatonin is supposed to be good to fight breast cancer so I'm thinking of taking it daytime as some studies indicate. Can't reference that now. I read it months ago.

    Oh and when I took letrezole before I was treated for fibromyalgia. I dont remember how long it took to clear up after stopping the letrezole that time but when I started it 4 yrs later I didnt have issues till now and I quit the letrezole about 4 months ago. My pain is a mix now of bone and muscle. Scans ruled out progression.

    I feel I cant complain around the house as dh has some arthritis pain and just says its part of getting old. He's 9 yrs older. I guess it wouldnt do much good anyway. So I'm hoping cutting back on xgeva doesnt make pain worse cause I read it can help control pain. But is it also a side effect?


  • Bliss58
    Bliss58 Member Posts: 938
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    Gailmary, of course everyone's different, but I've never had SEs from Xgeva except nausea once when a substitute nurse injected too quickly before I could stop her. Otherwise, I never even experienced the flu-like symtoms like Philly and others. I took Xgeva monthly for one year and then MO recently switched me to every 3 mos. I am 100% certain my joint aches and pains are because of the AIs exacerbating my arthritis. I've had arthritis for years, but it's never been crippling until I started on AIs. I've been through Anastrozole, Letrozole and now on Exemestane. The first two didn't fail me, but ultimately caused me too much discomfort. I've been on Exemestane the longest, 20 mos., and while my achiness has lessened my insomnia has increased. I keep thnking about THC/CBD for sleep and I'm now seriously gonna check it out. Not sure if it's legal in your state, but if so, something to think about. I've read lots on these boards that it works well for pain and sleep.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
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    Hi Miss Gail :)

    With regards to the insomnia, I take 20mg of melatonin (therapeutics dose for breast cancer) and have been on it since day one of diagnosis. I try to take it about 1 hour before bed. I do not have the same effects from it as you do, in terms of the restless legs. What typically happens is, I fall asleep quite easily and then I wake up many times in the night. I usually can fall back to sleep but if I can't, I put a podcast on, and listen to it. Sometimes the podcast lures me into sleep like a bedtime story and other times I am awake and listening to the stories, and enjoying them. I have listened to 2-3 hours of podcasts some nights before being able to fall back asleep. Every once in a while, I will take a Benedryl to knock me out. I am very sensitive to drugs.


    I also use a heavy indica strain of medical marijuana and smoke a little of it before bed to calm me down. That seems to help too. If the strain has any CBD or sativa strain in it, I am wider awake. These are the remedies that work for me. Even with all the waking up that I do in the night, which is some level of disrupted sleep or insomnia (and all completely new to me since being on all the medications), I fall into 1-2 hour sleep cycles. I wake up, fall back to sleep, wake up again, etc. I guess what I meant with I can't stop sleeping is that it seems like I could continue doing this all morning long and way into the afternoon if I didn't will myself to get out of bed and make a cup of coffee. Today I slept till 10:30am and only awoke because there was a ton of loud construction that started up in my apartment building. I could have kept sleeping. But also had to wake up for work. And I feel quite dizzy and spacy and tired and kinda puffy today. Just out of sorts!

    In terms of the pain from Xygeva, bone and muscle pain are a common side effect. I think the first year I was on it, I experienced pretty severe bone pains in my arms, legs and hips. Tylenol seemed to help a little bit with calming that down. I always imagined it to be the medicine killing of the cancerous lesions in my bones, and they were healing and aching like a healing wound can ache. Deep pain. It seems like it does not happen anymore. But it was scary. I also remember having severe abdominal pain when I started all the meds. So severe that it would wake me up in the middle of the night and I would curl into a little ball praying for it to stop. That doesn't happen anymore either.

    I am thrilled for you that your scans are clear! I can understand the confusion of clear scans coinciding with all the pain, being concerning.

    Hugs,

    Philly

  • olma61
    olma61 Member Posts: 1,025
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    One of my infusion center nurses always says to drink a lot of water after the Xgeva shot. Not sure what it’s supposed to help with but I drink a lot of water normally anyway and always bring three bottles to my infusion.

    Haven’t noticed any side effects that I think are specific to Xgeva. I blame my stiffness and aches on Arimidex

  • gailmary
    gailmary Member Posts: 436
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    Yes Bliss we are all different. Maybe cbd will work for you. I tried cbd but I needed too much to help me sleep so it got expensive. Maybe with some thc in it I'd have better luck with less but its not legal here yet. It does help with some of the aches.

    Philly, I'm afraid that waking every hour or so nightly is pretty normal to some degree as we get older. I decided to get used to it and not let it bother me. So glad i can nap during the day if needed. And the stomach pain, wow. Glad thar isnt a constant issue. I thought I was having a bad reaction one night but it was gall stones. After surgery I didnt need antacid anymore. I was fine with that though I discovered digestive enzymes help with some indigestion. And they are better for you. Oh my! Accupuncture should help with some of the pain, right?

    Olma, i read that before, maybe from you, about drinking the water. I wonder why. I understand with pills or after accupuncture or massage. But after an injection? I hope to remember to ask the next nurse I get in the infusion room. Any 1 of 12.

    Still hoping someone will chime in and say they have noticed a decrease in aches and pains when reducing xgeva.

    HAPPY HOLIDAY WEEKEND, GAILMARY

  • candy-678
    candy-678 Member Posts: 4,104
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    Cross posting from the Bone Mets Thread.

    Question for the group---

    I have been on Xgeva since bone met diagnosis. For the first year, I had monthly injection. After year 1 my MO changed it to every 3 month dosing. Now 2 years into diagnosis my MO said at today's appt she wants to change back to monthly dosing. I am on Lupron and an AI and she said I need the bisphosphonate coverage with being on both hormonal agents. I have the same MO, not someone new. Why the change now??? Also, I told her I am having quite a bit of spinal bone pain. And my TM's have slowly risen over the last 3 months.

    Has anyone went back on monthly Xgeva after being on a 3 month protocol???

  • olma61
    olma61 Member Posts: 1,025
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    candy - just seeing this question now. Don't know if anyone replied in another thread but -- yes, I was on quarterly XGEVA and went back to every six weeks in May. Six weeks because of my infusion schedule...I am there every three weeks so just to avoid an additional visit, we do every six weeks. Now the interval will change again due to my dental problems (and MO wanted me to go back to every 9 wks anyway).


    Speaking of which - I saw my oral surgeon yesterday and glad I did. He is much more well versed on the effects of these drugs and how to handle treatment than my regular dentist is. We will prepare to do the extraction, he is going to call my MO and my gen dentist and get back to me.

    He also said he would consider doing an implant if or when I can go off Xgeva for six months before and six months after. I am not brave enough to do that right now but maybe in the future if I stay stable....until then it will be partial denture time. : (


  • olma61
    olma61 Member Posts: 1,025
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    Just an update on my dental situation: I went to a new oral surgeon and he agreed to do an implant for me after being off Xgeva for 2 months. He said 2 months off Xgeva is the standard before oral surgery and he said that it may be better just doing the extraction and the implant together in one day since the trauma to the bone from the extraction was going to happen anyway.

    So, I have been off for nine weeks and I decided to take the risk and I had the procedure done yesterday. I will go and have the crown made later in the week.

    I am taking the risk to get what I really want! And having faith that I am going to be here long enough to make this decision worth the risk.

    If I do wind up with ONJ, "I did it my way". :-D But maybe I'll continue being as lucky as I have so far and escape that rare occurrence (which has a chance of happening anyway, even without oral surgery).


  • cowgal
    cowgal Member Posts: 625
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    I have had two doses of XGEVA and wondering if someone can tell me what ONJ feels like? I have bad allergies so I am having some pain in my upper jaw that I am wondering if it just my sinuses but thought I had better check with those that are dealing with it. Does the pain remain in one area, is it a constant pain, is it a dull or a sharp pain, etc.? Thanks in advance.

  • olma61
    olma61 Member Posts: 1,025
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    I know there are few ladies here that have had it, but until they come along, here is an article that describes the symptoms.

    https://www.breastcancer.org/treatment/side_effects/osteonecrosis

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    I had my first Xgeva shot today. Thanks for all the tips. I made sure to get fluids today. So far so good.


  • dodgersgirl
    dodgersgirl Member Posts: 1,902
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    hello everyone.

    Looks like I will be getting XGEVA shots. Waiting on insurance approval. My plan is supposed to be once a month XGEVA injections for now.

    I will read thru the last few posts to get a feel for what’s about to happen.

    For my original dx, I felt like I knew the path of my treatment plan but after getting a Stage 4 dx a few days ago, I feel like there is so much to read and learn

    My plan starts with XGEVA. I am scheduled for a PET scan, Brian MRI, and RO visit to talk about rads to my spine. Then on to I/L.




  • JFL
    JFL Member Posts: 1,373
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    DodgersGirl, sorry you have to join this club of which none of us wants to be a member. There is a lot more information, flexibility in treatment plans and drug options in Stage 4. The choices and sheer information can seem overwhelming but there is a general order in the first few treatments that most MOs follow, depending on your subtype of BC. It sounds like you are on that path if you are taking I/L. After the first few treatments, people may go down different paths for different reasons. However, the only good news in this is that there are many more treatments approved for Stage 4 and they pretty much all offer a better quality of life than the harsh, early stage chemos. Many are quite targeted these days, even the Stage 4 chemos. There are also a variety of newer targeted therapies, in addition to Ibrance. If you haven't requested it, you may want to request user Bestbird's BC guide. It is very comprehensive and I end up referring to it from time to time, particularly when I am looking into my next treatment line options. If you don't see the thread where you can request it, you can do a search in the Stage IV forum and you should be able to find it.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
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    JFL- I just downloaded Bestbird’s BC guide. Thanks for the tip!

    Nothing scheduled ref XGEVA shot yet. Looks like MO has sent I/L prescriptions to my pharmacy. MO said to wait til rads to spine is done before starting I/L. Rads not started yet. Just living in limbo for now


  • cowgal
    cowgal Member Posts: 625
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    I had my third dose of XGEVA a couple of weeks ago and I noticed that my shoulder that they give it in has been pretty sore lately...not at the injection site but muscles near that area of the shoulder. My other arm has lymphedema so I can't get shots in that arm and I will be starting Faslodex shots next week that I understand will be given in my hips. Any ideas on how to reduce the muscle pain from the XGEVA?

  • meja
    meja Member Posts: 84
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    Hi cowgal,

    I get or take my Xgeva subcutaneous injection myself in the tummy (beside and a little below of the navel) with no issues, - maybe you could try this injection site.

    Meja

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    cowgal - I've had 2 injections in the same shoulder with no issues so far. The recommendations I've followed are:

    1) Xgeva needs to be at room temp

    2) inject very slowly

    3) drink lots of liquids (I have lots of soups and smoothies after the shot.)

    I'm not comfortable with the idea of injections in my belly after needing to give myself Neupogen shots during chemo. That's an issue for me, but it is another option. I also take a daily antihistamine, but I don't know if that makes a difference.

  • cowgal
    cowgal Member Posts: 625
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    I get my shots at my oncologists satellite office and I will ask if the nurse is giving it slow and at room temperature. I have not been drinking a lot right after the shots and I may try that. I will also see if they think giving it in another location would help. My husband thinks that it might not matter where the shot is given since that is a side effect, it might hurt that shoulder no matter what. Thank you ladies for your help!

  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    After meeting with my MO today, she mentioned the new standard of care of administering Xgeva is every 90 days, rather then monthly injections which I was receiving for the last 6 months. Yeah.. Hopefully other folks are also receiving this news...

  • cowgal
    cowgal Member Posts: 625
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    Tinkerbell107 - I looked on the XGEVA website and it still says to administer every 4 weeks. If the manufacturer has not changed the injection time than who has? I just want to know what that information is so I can ask my MO about it.