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Faslodex Girls Thread

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  • Leah_S
    Leah_S Member Posts: 1,929
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    I LOVE FASLODEX!!!!!!!!!!!

    My tumor markers went down almost 100 points in the first month - yeah, in the beginning when there's not supposed to be any change yet.

    CELEBRATE!

    Leah

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Leah,

    How fabulous!!!!! Doing my pathetic version of the happy dance.

    *susan*

  • tina2
    tina2 Member Posts: 758
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    Brava, Leah! Excellent news. I will raise a toast you tonight!

    Tina

  • sandilee
    sandilee Member Posts: 436
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    Fantastic response, Leah!  This is a very good sign that this drug will be good for you!  Smile

  • tina2
    tina2 Member Posts: 758
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    Leah, 

    P.S.  "Bottoms up!"

  • NYCchutzpah
    NYCchutzpah Member Posts: 148
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    Mazel-Tov Leah. Hope you get to celebrate exuberantly this Purim  

  • pajim
    pajim Member Posts: 930
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    Congratulations!  Glad to hear those buggers are bugging out.

  • 20130502
    20130502 Member Posts: 162
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    Fantastic news Leah!!!!

  • 20130502
    20130502 Member Posts: 162
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    ok so now I am wondering why I have been whining all this time about likely being on a placebo in the palbociclib trial because no side affects.  Woke up queasy today. Wondering how I will possibly take the pill, drive daughter to cello lesson and then to orchestra concert.  Could this be Faslodex effects after two weeks or do I now "know" I am on the real palboclicib?  I suppose I should be happy but hard to push through this to say that..... Need to go read ask Abby or Ann landers to remind myself how lucky I really am......

  • sandilee
    sandilee Member Posts: 436
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    20130502-  I suppose it's possible that you would get queasy from Faslodex after two weeks, but I've never really felt that in the nearly three years I've been on it.   I don't think those who feel nausea feel really queasy- just  a little for a day or so, but maybe I'm wrong. 

      I'm hoping this month isn't my last on what has been a very easy ride for me on Faslodex.  I've been experiencing some tingling in my arms, and my onc scheduled an MRI next week to check out my cervical spine for compression.  If I have a problem due to progression, he will probably take me off it. :(   It's really hard to imagine anything else working so well, or so SE free.

       Cross your fingers for me, Fas girls. I really don't want to leave you all!  Sad

      

  • tina2
    tina2 Member Posts: 758
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    Fingers crossed, Sandilee!

    Tina

  • pajim
    pajim Member Posts: 930
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    Toes crossed too!

    20130502, I've never had nausea on this drug, so I can't help.  could this be a virus?  Palbociclib?  faslodex?  None of the above?

  • denny123
    denny123 Member Posts: 1,495
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    I have been on Faslodex for 2 years and haven't had any nausea from it either.

  • 20130502
    20130502 Member Posts: 162
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    Thanks all for the info.  I only had the nausea one day (thankfully) so maybe it had nothing to do with drugs at all - could have been what I ate the night before :)

    I had my second loading dose today.  My WBC is 2.2 (usually between 3.7 and 5.6) and my ANC (which is what they said really matters?) is down to 1.3 (from 3.9) so there is a reasonable chance that I am actually getting Palbociclib and not the placebo along with my Faslodex.

    It went pretty well.  I still have stinging on one side.  Same side as was more uncomfortable during the injection last time but I don't remember extended stinging two weeks ago.  Hopefully will be all gone by tomorrow.

    Overall, feeling pretty chipper.

    Janet

  • 20130502
    20130502 Member Posts: 162
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    @Sandilee:  Any news?  Hopefully good news?  Thinking of you!

  • sandilee
    sandilee Member Posts: 436
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    Thanks for asking, and yes, I do have news! My onc just called me with the MRI results this afternoon, in fact.  Apparently I do have a little more narrowing in the spinal cord where I had the T3 vertebra problem in 2011, but it's just bone and not more cancer, apparently from either arthritis or just settling from the previous injury. That would explain the occasional tingling. My cervical spine also was ok--- stable cancer, but no new cancer.  So I get to remain in the Fanny Pack!

    Yay!!  SillyHeart

     I haven't seen the radiologist report myself yet--just talked to my onc, so I would still like to see for myself.  I may at some point make an appointment with my old oncology radiologist who mapped and treated my spine in 2011.  He's really nice and lets me see the actual film on his computer. I went to see him in early 2013 to compare MRIs, and I find his comments very insightful, He is able to help me understand what I'm seeing.

    If he says "no new cancer," I believe it.  

     Anyway, I'm happy that I get to go in this Thursday for my Faslodex!

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Sandilee.... whooohoooo! So glad you get to stick around the Fanny Pack! Have a seat... with or without a pillow.

    *susan*

  • tina2
    tina2 Member Posts: 758
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    Sandilee,

    Wonderful news! And it's great that you can visit your former radiation oncologist for an in-person interpretation. 

    Bottoms up, hon!

    Tina

  • pajim
    pajim Member Posts: 930
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    Happy day Sandilee!

    I have a question for you ladies.  I now have a rock hard "lump" on my left side.  Smaller/softer one on the right.  I keep rubbing them (mostly in the shower) to no avail.  They've been growing over time and usually soften up within the month, but not this time. 

    Suggestions?

    Is it going to hurt like crazy when they stick the needle into the lump next week?  It feels like knotted muscle (well, like a brick). 

  • susan_02143
    susan_02143 Member Posts: 2,394
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    I think I would mention the "lumps" to your nurse next week and ask him/her about this. Certainly s/he will strive to inject somewhere else this month. I vaguely recall a few lumpy months, but simply can't pull up what, if anything, we did about it. For me, the pain is a random event. Some months my backside feels great and I have injection pain; some months my backside is still very sore and no pain. Take those components, mix them around, and I have experiences all of them.

    I am delaying my injection by a week and wonder how I will feel during week 5. Will I feel better? Will my body go into free fall since it isn't getting its drug? Just won't know until it happens I guess.

    *susan*

  • denny123
    denny123 Member Posts: 1,495
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    Yay Sandilee!  

    Pajim-I have those lumps too and sometimes my butt does hurt...comes and goes.  My friend used to get huge black and blue marks from the injection.

    We all present differently, I guess.

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Denny, well we all present with our butts forward!  :-)    *susan*

  • sandilee
    sandilee Member Posts: 436
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    Thanks, all!

        Pajim- I sometimes get lumps where I received injections- especially at the beginning of the treatment, and the nurse looks for a different spot to give the shot, maybe slightly above or below the lump.  If your nurse doesn't feel for them, you might point them out to her so she can avoid them.  I think lumps are a fairly common event with this medication.  They go away in time. 

  • Leah_S
    Leah_S Member Posts: 1,929
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    Sandilee, so glad to hear your good news!

    Leah

  • Julianell
    Julianell Member Posts: 1
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    Hello ladies! First post. Just dx 11/26/14 with stage IV, mets in liver, bone, and other various places. This is my third round with BC.  I had radiation on my femurs in Jan.2014, three months of Letrozole- no help. So I will be starting Fosladex and a clinical trail for something called BKM120 in three weeks. Any suggestions will help. I have read over thread and am so happy to see positive results. So glad I found you all!

  • tina2
    tina2 Member Posts: 758
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    Welcome to the Fanny Pack, Julianell. I've been on Faslodex only, so I know nothing of combo treatments. As far as Faslodex, you've read this thread, so you already have a condensed version of our combined wisdom about SEs and other things. It's been a good treatment for many of us and we hope it is for you, too.

    Bottoms up!

    Tina

  • birdlady222
    birdlady222 Member Posts: 185
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    I have been on Faslodex for six months.  Sometimes I get those bumps.  I just had my treatment Monday, and have a large one on the right side and it's quite tender.  I have been using a moist-heat microwave heating pad on it for about 20 minutes a few times today(at the suggestion of my nurse)  It has helped.

    I don't know if it will help anyone else, but I am always open for suggestions.  I would also ask the nurse to try and avoid that area, and give your next shot in a slightly different spot.

    Bottoms up!

  • Wilsie2
    Wilsie2 Member Posts: 240
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    if Faslodex is doing the trick (I think it is) it has the fewest side effects of any of my other treatments. Yes, it hurts for a bit, but I don't feel anything else from the shots. My markers were down for the first time since October. 

    I am having physical therapy three times a week for hip (which needs replacement, but they won't because of my diagnosis) , it is helping a lot, but as they say "no pain, no gain".  Anyone else have hip problems?

  • tina2
    tina2 Member Posts: 758
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    Wilsie2,

    I'm having a hip replacement next week! It is for degenerative arthritis, not cancer, but my oncologist has given the go-ahead for surgery. I've been limping with pain for years despite PT and mild meds. Quality of life is paramount and I have lots of traveling, dancing, hill-climbing and baby-lifting to do before I shuffle off to Buffalo.

    Faslodex treatment started steadily reducing the size of my mets during the first year and has kept my cancer stable/NED for nearly two years. 

    New Observation: I usually get a few hot flashes for several days after the injections and start having them again a week or so before I'm due for the next round. I figure what's going on is my body's attempt to recalibrate its miniscule estrogen levels, or something akin to that. Since I won't have the injections until two weeks after the usual time, I wonder if my current flashes will worsen. Oh well, it will just add to the myriad miseries of being hospitalized, one of which is dependably horrid food. 

    Tina

  • Mary_123
    Mary_123 Member Posts: 5
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    Tina,

    Have you been taking any supplements while on Faslodex?

    Also, have you made any dietary changes?