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Bone Mets Thread

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Comments

  • cjanet
    cjanet Member Posts: 288
    edited May 2015

    Wow did not realize Xgeva could cause so many side effects! When I asked the nurse, she said no one really complains of any side effects! I've had one shot so far, next is scheduled for June 3rd. I've been having nausea but I have been attributing it to the Arimidex. Today I'm in a lot of pain- took 3 of those fentanyl spray things and they are mild. Pain management doc warned me they might not be strong enough. Said give it 30 minutes, if still in pain, take another.

    But to be honest, maybe I overdid it. My husband took my daughter to 2 BBQ's- they are currently at their second. I declined to go bc I've been getting carsick and it's about 1 hour away. Stayed home w my 3 y/o son, took him to the local zoo for a little train ride and walked around just a bit looking at animals. Then went straight to Trader Joe's to go shopping as I got a gift certificate there from a friend. Came home about 2 pm and have been battling w pain since. Laying in bed a lot. Took my son back out to play w the neighbors a little, but now back in bed. It's burning pain. I will give it another 20 minutes and take another fentanyl spray.

    Hope everyone is having a nice weekend!!

  • NYCchutzpah
    NYCchutzpah Member Posts: 148
    edited May 2015

    Re: Xgeva, sorry that others are having bad SE with Xgeva, Have been getting Xgeva shots for around a year so far. I did see a dentist before starting it and took care of all dental needs before first dose.My experience has been totally different, haven't noticed SE from the Xgeva but the Taxol and some other things do give me problems.

  • Myra1211
    Myra1211 Member Posts: 532
    edited May 2015

    No SEs basically from Xgeva except some bone pain for a couple of days. Been taking it monthly for a year. Myra.

  • Myra1211
    Myra1211 Member Posts: 532
    edited May 2015

    BTW cjanet, were you at Turtle Back Zoo? I grew up in West Orange. Myra.

  • cjanet
    cjanet Member Posts: 288
    edited May 2015

    Yes, I went to Turtle Back today. My husband, daughter and son are likely going tomorrow again! That's cool. I grew up in a suburb of NYC but moved to NJ in 2004 when I married my husband. Are you still in NJ?

  • Myra1211
    Myra1211 Member Posts: 532
    edited May 2015

    We have been in Florida for 26 years. Myra. They had just built it while I lived there.

  • Karz72
    Karz72 Member Posts: 102
    edited May 2015

    I'm getting Zobone, not Xgeva, but I do find that when I have the monthly infusion with my Taxol its far worse. I'm more tired out & have achy flu like symptoms for 3 or 4 days & feel very sorry for myself. Only 2 more Taxols left so hoping the Zobone gets easier to handle when its on its own.

  • HLB
    HLB Member Posts: 740
    edited May 2015

    cCling those are great pics! to Kiwi and anyone interested, there is also a live bald eagle cam at the PA Game Commisions website. two babies and they are supposed to fledge around the end of June. you may have seen them on tv because the nest made national news when mom became completely covered in snow while sitting on the eggs. It's so neat to watch, I culd watch them for hours! at one point there were at least 15 dead fish in the nest. looked awful. There was even a dead skunk but I think they had trouble trying to eat it.  there is also a live cam on a peregrine falcon family that lives on top of the rachel Carson building in harrisburg PA. I don't  know the exact websites but I'm sure it's easy to find on a search.  Hope everyone is having a nice relaxing holiday weekend. Heidi

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2015

    Been on Xgeva  since 2012 & Zometa before that - no problems.  Thankfully!

  • Sharon8
    Sharon8 Member Posts: 81
    edited May 2015

    Happy Memorial Day to those of you in the US!

    I've been getting Xgeva injections monthly since January with no problems. I was tired for a few days after the first one, and it's been smooth sailing ever since. I had dental work done before I started, and I just went for a six-month check and cleaning and no jaw problems. I am having serious sleep problems, but I think it's at least partly the Aromasin.

    I hope everyone is having a good day.

    Sharon

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited May 2015

    Thanks, Heidi! I've seen some of the falcon ones and an owl nest too. I'll look for the PA eagles. Amazing and majestic birds.

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited May 2015

    it's so quiet in here. Everyone ok ?

  • ronniekay
    ronniekay Member Posts: 657
    edited May 2015

    can't believe this...my friend just sent the Decorah Eagle website to me. We watch eagles out our window as they live around Lake Washington. Youngsters have landed on our deck railing...amazing creatures & fabulous pix, gals! Cjanet...I'm sorry the pain's been do bad :-(

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited May 2015

    Hi all,

    Yeah, quiet around here.  Hope you're still doing well Patty. 

     I'm still walking without a cane, I feel so normal!  LOL  I think I found the right dosage/mix of pain meds.  I haven't felt this good in a long time.  I'm seeing my Onc on Thursday for my results - I hope I'll feel good when I walk out of there...

    Hope you U.S. girls are having a nice long week-end.

    Hugs to all - Linda

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited May 2015

    Hi Patty, Ronnie, and Linda! All is well here in New Zealand. I think I'm nearly over this stupid flu thing. Still not 100%, but much better.

    Linda - that's great!!! Amazing what a difference the right meds make.

    Ronnie - my great aunt taught in Renton for like 35 years. And I was born in Tacoma...lots of family in Washington state, back in the day. Never got to see eagles despite spending all my summers in Washington when i was growing up. How fantastic for you! The Decorah eagles are so fun to watch. I think I've been watching them for five or six years now, along with other nest cams.

    The house we're renting is on a sand dune, with flat paddocks below. The hawks come down and hunt in the paddocks and soar across at our eye level when we're sitting in the kitchen. Love watching them. Saw a California condor family in Zion on my last trip there before I left the US. But never seen a bald eagle - that would be incredibly special!

    Off to the oncologist this afternoon. Haven't seen him since November and we'll be working off my February blood work. I couldn't make my late Feb appointment, so just getting in to see him now.

    Hugs to all,

    Terre

  • GG27
    GG27 Member Posts: 1,308
    edited May 2015

    Hi all!

    Just got back from onco. Most of my mets are stable except the one over my eye, which I didn't even know about. She wanted to change me from anastrozole to letrozole plus something else which I can't remember. Does anyone have any idea what is usually paired with letrozole? It has horrific sounding SE's including pulmonary embolism causing death, mouth sores so you can't eat or drink & diarrhea. Not sure how you get that if you're not eating or drinking. Anyway, I talked her out of that, asking to have my mets radiated so I could stay on anastrozole. So I have an appt with the RO on June 16.

    Sorry I haven't been keeping up with the thread, I'm tired of cancer. My friend who is stage IV colon cancer is having a really tough time right now, so I'm going to be in and out of here from time to time. I hope everyone is ok, you are all in my thoughts, but I need to step back for a while. Cheers, Dee

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited May 2015

    Hi all,

    Good news @ stable Dee. Sorry about the eye thing..that just sucks. And totally understand needing a break from cancer. Sending good thoughts to you and your friend.

    Saw my MO today. Everything is stable. He said "your CT scan says your brain is normal - I'm not sure that can be right!" Great humour. Did another round of blood tests. They'll call me if anything looks off. If not, I see him in 6 months! He said I'm his "great success story".

    Hugs to all,

    Terre

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited May 2015


    Dee - I'm so sorry to hear this.  Letrozole is usually paired with Ibrance, but Ibrance is not available in Canada.  It may be Affinitor, commonly paired with Aromasin.  The SEs sound like Affinitor.  Good luck with your rads.  Take all the time you need - you are also in my thoughts.  Big virtual hugs to you and to your friend.

    Terre - that is absolutely wonderful news. 

    My turn tomorrow at Onc's for results.  Was feeling OK until today but now anxiety is settling in.  Last time I saw her, I was feeling so sh*tty that she warned me she suspected progression and the dreaded Aromasin/Affinitor combo would be next.  And since my last visit I've been feeling gradually better physically.  I'm gonna hang on to that for now.

    Linda

     

  • jobur
    jobur Member Posts: 495
    edited May 2015

    LindaE, good for you, no cane!  I'm happy to hear you are feeling so good lately.  Yeesh, they sure make you wait long enough for your scan results. Will be thinking of you Thursday, hoping for good news. 

    Sharon8, sounds like you are doing well too, except for the sleep thing.  I had a lot of trouble sleeping at times on anastazole.  A good nights sleep is soooo important to QOL!  I recently got an rx for generic ambien.  Never did try melatonin, but that seems to help some people. Hope you figure something out.

    Patty, You have been pretty quiet yourself lately!  I'm thinking that's cuz you're busy living your life?  Hope you are feeling good these days.

    Dee, I think you made a good choice staying on anastrazole and doing rads to that one spot.  Only thing I have heard of paired with letrezole is palbociclib/Ibrance, but what do I know?  Seems like every damn drug out there has a more or less horrific set of possible se's!  Amen to being tired of cancer.  It's good not to dwell on it when/if that's possible.

    KCM, Yeah for stable!  You only see your mo every 6 months?  I'm jealous! How nice to be referred to as a success story!

    SyrMom, Did you get enough input to your questions about Hawaii?  I didn't post on this as you seemed to be getting good info from others.  I think it all depends on what kind of vacation you want.  Shopping, sightseeing, night life, or just a quiet time looking out over the ocean and lounging by the pool?  A couple things I did not see mentioned elsewhere, food in general is expensive, and eating out can eat up your budget, so it is nice to have a place with a kitchen, or at least a microwave and mini fridge.  Also be aware of the difference between "ocean front" and "ocean view" rooms.  The latter often means you can see a teeny bit of ocean if you hang over the railing of your lanai.  Ocean front usually means your lanai actually looks out over the ocean. You'll be able to tell the difference by the price!  Hope you have a wonder time! 

    Finally seeing the sun here today after a bunch of rainy, gray days.  It's going to feel good to get outside again.

  • jobur
    jobur Member Posts: 495
    edited May 2015

    Linda, You must have posted while I was writing, only you're quicker and not so damn long winded!  Hope you keep busy today and keep that scanxiety away! Fingers crossed & positive karma coming at you!

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited May 2015


    Thanks Jobur.  Go out enjoy the sun!

    Linda

  • GG27
    GG27 Member Posts: 1,308
    edited May 2015

    Thanks everyone for your good wishes. Linda, you were right, when I googled Afinitor it came up with the name she used "Everolimus" I rec'd a call from the rads onco & I am booked for the consult & CT on the 16th & if I agree I will get rads on the 17th. It's going to be quite a week as I have blood work on the Monday, Tuesday consult, Wed rads & Friday Pamidronate. I have to travel by ferry to all of these & 2 of them are also a 2 hour drive each way.... Why, oh why do they have to book everything for the same week?

    Wondering what SE's I can expect from the rads. I think I'm getting it to my right rib, left upper arm & over my left eye.

    Thanks again for your help, I feel so completely wrung out. Tired of being a cancer patient, I know it's better than the alternative, but some days are harder than others. Dee

  • annieoakley
    annieoakley Member Posts: 653
    edited May 2015

    Dee, I think you're making a good choice trying the rads first and I feel bad for all the travel back and forth to your appts. It's good that most of your mets are stable and praying the rads take care of the rest. I hear ya on being tired of being a cancer patient. Sending you healing hugs and positive energy.

    Linda, I'll be holding your hand tomorrow and praying for you to get the best possible results. So happy you've been feeling better lately and hoping that's exactly what your results reflect, no progression.

    Terre, awesome to be a success story! I'd like to join you if I can :). Well although my white blood cells are low at the moment my tumor markers have dropped yet again to 13. My onc is ecstatic about this and not so concerned about my WBC,  although I am. 

    Jobur, nice to hear from you, how have you been feeling?

    Hugs to all, Annie

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited May 2015


    Thank you Annie and congrats on your TMs!  I would not worry too much about WBC unless it becomes a trend.  How are you feeling?

    Linda

  • annieoakley
    annieoakley Member Posts: 653
    edited May 2015

    Hey Linda, I'm feeling good, just a little more tired than usual but it's also been very hot and humid and that doesn't go well with my MS. I'm curious if my WBC could be off because I went the day after my pamidronate infsuion? The blood work I had done beforehand was apparently very good, this was a routine blood work up done by my family doctor. It all gets so confusing but I know it's important to not have them get too low. All the best tomorrow, I'll be with you in spirit! Hugs, Annie

  • Milaandra
    Milaandra Member Posts: 154
    edited May 2015

    Hi all. My CT report is stable, with sclerosis at the bone met sites. All good! I had a microsurgical fixation to support a badly chewed lumbar October 29, and when I was at a follow-up recently (my idea) the surgeon said there were signs of fusion. After a 3 hour wait, I was a bit less than focussed, and didn't ask him what that meant, and all I can find online refers to spinal fusion from bone graft. Has anyone heard this term used when discussing a bone met?

  • annieoakley
    annieoakley Member Posts: 653
    edited May 2015

    Milaandra, oh my goodness so good to hear from you! Seriously this is so weird as I was thinking of you the other day and wondered what happened to you. I tried to search for you on the members list and couldn't find you. You were one of the first to greet me on this thread and I always thought of you cuz one of your last posts wasn't so good, you were having alot of problems at the time. Sounds to me like your surgeon meant that the procedure worked if there is fusion. Glad to hear everything else is stable! 

  • QiXian_Ho
    QiXian_Ho Member Posts: 5
    edited May 2015

    Hi, after meeting the medical oncologist on Monday to talk about treatment options, she recommended 2 clinical trials. The first option (MONALEESA-7) is a double-blind placebo controlled study of LEE011(ribociclib) or placebo in combination with tamoxifen and goserelin for pre-menopausal women. The second option is a phase 1 trial involving lezotrole and LEE011 for post-menopausal women. In order to qualify for the 2nd option, my mom would have to go through a bilateral oophorectomy, in which the MO says that its actually good for her in the long run also. However, her blood test shows a higher than average levels of phosphate, the MO brought in a endocrinologist to try and bring her phosphate down in order to qualify for the trial. We just met with the endocrinologist and he suspects that the high phosphate levels might be due to her bone mets, so they are taking her blood and sample urine again to test. My mother is inclined towards the second option.

    Anybody had similar experience with regards to bone mets causing high levels of phosphate in blood? Any advises?

    Thanks.

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited May 2015

    This is awesome. Let's pray they fast-track the research!

    http://medicalxpress.com/news/2015-05-scientists-key-secondary-cancers.html

  • Milaandra
    Milaandra Member Posts: 154
    edited May 2015

    No, I have to say that my bloodwork is always good, and they take it every month before I get my shot. 

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