Faslodex Girls

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  • MaryLW
    MaryLW Member Posts: 2,172
    edited June 2013

    Oh, gee, my nurse recommended heat when I complained about having a big sore lump! I wonder what the right answer is!!

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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited June 2013

    I know it's been mentioned in several different threads but in case anyone in pain after injections has missed it, may want to try Benadryl 2 hrs before and after injection. I've tried it both ways and it seems to help the pain to take it. Doesn't make it disappear but seems to diminish the pain at injection site. So sorry for all of us who have the pain especially as it is in both cheeks.

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  • MaryLW
    MaryLW Member Posts: 2,172
    edited June 2013

    Can you take Tylenol and Benedryl both before the injections? What do the rest of you do about applying heat after the injections if you have lumps? My nurse said to apply heat, but Tina's nurse said not to!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited June 2013

    Y'know, sometimes I think there just is no "right" answer to anything regarding this stuff. And Astra Zeneca is hardly forthcoming about recommendations. Maybe I'll give them what Ernestine (anyone else here remember "Laugh In?") called "a little ringie-dingie."

    Tina

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  • milehighgirl
    milehighgirl Member Posts: 444
    edited June 2013

    Good morning all. 

    Tomorrow is shot number two day.  So far I have had no SE's that all of you have been talking about.  Should I be expecting them down the road?

    And, for those of you that have been on the Fas for awhile, did your cancer continue before it receded?  It seems that my new mass is getting bigger.  I know it's only been two weeks but I'm hoping it's a sign that the Fas is going after what it's supposed to before it gets smaller.

    Sue

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  • Tina2
    Tina2 Member Posts: 2,943
    edited June 2013

    Sue, don't expect side effects! Many folks don't have any, so please assume the best.

    As far as effectiveness, Faslodex takes a bit of time to work, usually at least several months. The fact that your onc put you on it means he or she believes the wait for it to kick in is well worth it.

    Hang in!

    Tina

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  • milehighgirl
    milehighgirl Member Posts: 444
    edited June 2013

    Thanks Tina.  I was getting nervous about all of these SE's and wondering if they were headed my way!

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  • Tree3
    Tree3 Member Posts: 159
    edited June 2013

    Sue, the first month I went on faslodex and Aromasin my markers went sky high. That was last October and they have been coming down steadily ever since. Also, I've had no side effects from either med. many of us on this board have had no side effects. So, perhaps you'll be a member of our group.

    Good luck

    Tree

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  • milehighgirl
    milehighgirl Member Posts: 444
    edited June 2013

    Oh Tree, I sure hope so! 

    I'm back on the Femara which I had gone off back at the end of January.  My cancer spread quickly on aromasin and thus the introduction to Faslodex and the Xgeva once a month.  A little hair thinning on the Femara but I can live with that.  I've actually been able to go without the ibuprofen or Aleve at night for the last several days so I'm thankful that something is working.  Just wish I could get my stomach back in shape since I burned a hole in it from the ibuprofen a few months ago.  Salads and my beloved hummus are out.  I never know what is going to give my stomach the flip flops.  Looks like I'll be living on oatmeal for awhile, ha ha.

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  • Nursie3263
    Nursie3263 Member Posts: 6
    edited July 2013

    Hello everyone.  Soooo glad to find this!!  I was diagnosed with bone mets last week and start on the Faslodex today and will add Xgeva in a month.  The side effects terrify me!!  I had Zometa 3 years ago....one dose....It made me feel like my bones were twisting.....awful.  So I am worried about that same SE with these.  Help?

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited July 2013

    Nursie,

    The first Zometa infusion has the worst side effects.

    With Zometa, the side effects diminish with each subsequent treatment, and can be mitigated by really pushing the fluids the day before treatment, the day of, and the day after. Personally, if I don't hydrate like a mother, I still get some joint achiness, and I've been doing Zometa for over a year now. I also ask the nurse the hang the "big bag" of saline before treatment. It adds about 20 minutes to the infusion time, but is sooooo worth it.

    I don't know if Xgeva has the same SEs as I haven't taken it, and it is not a bisphosphonate, like Zometa is, but is used for the same purpose as the bisphosphonates.

    Let us know how your Faslodex injections went. I find it helpful to stress the gluteals the first day to avoid butt pain (deep knee bends, climbing stairs, etc.).

    Jennifer

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  • milehighgirl
    milehighgirl Member Posts: 444
    edited July 2013

    Nursie, I just had my second loading dose this morning.  I had no side effects from the first shots two weeks ago and none from the Xgeva I got on the same day.  I'm hoping that I have none from today or in the future. 

    My nurses know exactly how to do the shots.  Warm them up and then inject very, very slowly.  They also knew about putting your weight on the side not getting the shot and then alternating to the other side.  I didn't have to tell them anything.  I also took two ibuprofen about two hours before the shot.  So far, so good.  We'll see how I feel tomorrow!

    I also had Zometa three years ago and had no side effects from that either.  I think everyone is different so we'll just keep our fingers crossed for you!

    Sue

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  • Tina72
    Tina72 Member Posts: 484
    edited July 2013

    Tomorrow is my one year mark on faslodex and Femara. Next Tuesday scans. Fingers and toes are crossed.....bottoms up;)

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  • Nursie3263
    Nursie3263 Member Posts: 6
    edited July 2013

    Thank you so much for the info.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2013

    Tina, a real milestone! Congratulations on one year! I have never been very "in to" milestones until BC, and now I celebrate each and every one of them. Which scans are you getting on Tuesday?

    *susan*

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  • Tina72
    Tina72 Member Posts: 484
    edited July 2013

    Susan, I am having a ct of abdomen chest and pelvis.

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  • bourscheid
    bourscheid Member Posts: 718
    edited July 2013

    So today I had my onc checkup...after last month's scary jump in TM to 87 (a jump from 45) my TM's have dropped back down to 55!  Yay!  Seems the Staph Infection in my foot was probably the cause of the jump.  I get to stay the Faslodex and Xgeva course!  Woohoo!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2013

    Yay, Lori! Happy for you. Now you can really enjoy the Fourth!

    Tina

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2013

    Lori,

    What a relief this must be for you. Enjoy your news!

    *susan*

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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited July 2013

    Lori, :-D

    Yay!!!!!!

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  • pajim
    pajim Member Posts: 2,785
    edited July 2013

    Congratulations Lori!

    I go for the first scan since diagnosis next week.  I feel like my level of anxiety should be higher than it is, but I assume unless the news is really bad we wouldn't change the treatment so soon?  Three months isn't time enough for everything to work.  Of course the fact that I even mention it must mean my anxiety level is higher than I think it is.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2013

    Pajim, yup. It's a clear case of Closeted Anxiety.

    Good luck next week!

    Tina

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  • pajim
    pajim Member Posts: 2,785
    edited July 2013

    I think you're right -- I'm hiding in the closet.  Think I'll stay in here for a while.

    Happy 4th of July everyone! 

    Pam

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Hi - caught up with some pages. Lori, so good to har your news back in April. Thanks to those who helped me understnad more on the bone pain. 

    My experience, the bone pain stopped.  I did have a dexa scan but will not know results until Monday, along with the new blood tests too.  Those have been good.

    The bc oncologist / researcher in Indy was very happy with the results two months after beginning the Faslodex / Arimidex.  So is my oncologist here.  Swelling in nodes was gone, she couldn't feel anything, he couldn't.  I felt a lot better too, walking easier, the lungs had been hard hit, but right now am good still.

    Hot flashes, omg, about to strip when those happen, I go prepared, layering my clothes and I acan barely stand to wear socks no matter how chilly, it triggers flashes.  I use a spray with aromatic oils so the flashes dissipate quickly.  Sometimes it feels like torture, I had it easy in menopause if THESE are hot flashes *___* hahaha

    You can make it or purchase the bottle like I did from a health store but I think she made this and bottled it.

    * 4 drops of Clary Sage
    * 3 drops of Roman Chamomile
    * 3 drops of Geranium
    * 2 drops of Cypress or Pine
    * 1 drop Peppermint
    * 8 oz of distilled water

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  • pajim
    pajim Member Posts: 2,785
    edited July 2013

    Hi Bluebird, the FDA just approved a low dose SSRI for treatment of hot flashes.  Non estrogen containing.  I have no idea of the actual rate of efficacy.  Here's the info from the FDA press release.

    "The safety and effectiveness of Brisdelle were established in two randomized, double-blind, placebo-controlled studies in a total of 1,175 postmenopausal women with moderate to severe hot flashes (a minimum of seven to eight per day or 50-60 per week). The treatment period lasted 12 weeks in one study and 24 weeks in the other study. The results showed that Brisdelle reduced hot flashes compared to placebo. The mechanism by which Brisdelle reduces hot flashes is unknown."

     

    I don't get them anywhere near as bad as a lot of people, but friends say they can be horrible.
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  • hollander
    hollander Member Posts: 213
    edited July 2013

    I have had six rounds of Faslodex, and have been so lucky... no side effects to speak of, and no issues with the injections, as long as the nurses get it warm and take it slowSmile.  But I'm really feeling the anxiety about my first PET scan since my stage iv dx back in Feb.  It's scheduled for Wed. afternoon, and I'll see my MO on Thursday morning for results and a chat about how everything looks.  The scan procedure itself doesn't worry me- it's hearing the (possible) news that the Faslodex hasn't been effective and the mets have shown up in some new areas.  

    I've had some occasional pain on the left side (where subpleural lung nodules initially appeared), and it's enough to interfere with my sleep.  Advil usually helps with the pain, and Ativan with the sleep, but the anxiety cranks up when I start thinking that the pain is caused by cancer activity.  When the pain subsides, life is good, and everything is back to normal.  Or "new normal".  This stage iv journey really is a roller coaster ride as so many of you have posted.  I've just spent the most wonderful weekend with my extended family in VA, and know how much they all love and support me with this illness.  But I don't feel like I can tell them, or my parents, siblings or my dear children how very afraid I am.  They take their cues from me, and I really want my life to be as normal as possible.  My MO says we are at the beginning of a long list of treatments available, but on the days that I feel some pain, I can't help but worry about what lies ahead.  

    I read these boards much more than I post, but you amazing ladies are a constant source of comfort and support.  Just seeing how you treat each other and are there for all of us makes a huge difference in my experience with this *&%# disease.  No one else gets it like you do.  Thanks for letting me vent, and know that there's a special place in heaven for all of you!  Sending big hugs out to everyone as we start a new week, and special prayers to everyone having scans and getting results!

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  • pajim
    pajim Member Posts: 2,785
    edited July 2013

    Hollander, I am pretty much the same as you.  Scan on Wednesday (first since diagnosis), but I don't see the doc until next week.  Mostly because I'm traveling this weekend.

    Faslodex takes a while to work (as I understand it).  So unless your scan is much worse likely the treatment may not change.

    Hang in there!  May all the scans be great.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2013

    Hollander,

    Scanxiety is a common "disease" around these parts. The other anxiety is NOT getting scans. I can't help with pain, or any of your other questions. Just wanted to lend support.

    *susan*

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  • hollander
    hollander Member Posts: 213
    edited July 2013

    Thanks for listening and for your support, ladies.  Pajim, good luck with your scan, too.  Susan, scanxiety is exactly what it is!  Tomorrow is another day Smile

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  • MKL
    MKL Member Posts: 34
    edited July 2013

    Hey everyone....I have not posted here in a very long time.  I think about everyone all the time.   I think i joined in 2003.  I was dx in Oct 2000 with IDC...cancer returned in Nov 2009 in my bones.  I have been taking 250mlg Faslodex for amost 4 years. 

    I hesitated posting today and I don't don't why...is there anyone here that feels like I do...almost 13 Years from DX.  I still have so much anxiety, stress, depression,  you name it...I have it.  I have sought help for all of these symptoms...meds, shrink, talking.   I know how much I am blessed with family I have.  I took notice of hollander's post..."but I don't feel like I can tell them (parents, siblings, children and I will add friends to that list) how very afraid I am".  They just don't understand.  That's my take on it anyway.

    Love the word "scanxiety"

    Thanks everyone for listening!!!

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