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Faslodex Girls Thread

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  • Tree3
    Tree3 Member Posts: 45
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    it's working.  I'm getting notified agin.  Thanks for the warm welcome both Tina andSusan.

    I get tired.  Boy, I get tired a lot.  I'm hoping my workouts will help with energy and will keep you all informed. 

    I have to go get ready to go grocery shopping and when I come back I'll be pooped!

    Teresa

  • pajim
    pajim Member Posts: 930
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    Tree, Welcome back!  sounds like a great way to beat the cold (go on vacation).  Great to hear things are going well.

    The first year on treatment I didn't notice any fatigue, but lately I do notice I get tired more easily.  I've been chalking it up to winter (air too dry, not sleeping as well. . .).   Guess I'll find out when spring arrives.

    Gotta start hydrating for the Wednesday visit.  I promised myself this time I would do so.

  • Tree3
    Tree3 Member Posts: 45
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    Pam, thanks for the warm welcome.  I hope your Wed. Goes well.  Please keep us posted.  

    Teresa

  • Lynne
    Lynne Member Posts: 368
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    Hi Teresa. Glad you're back on here! Yes it has been a long winter! Maybe we'll run into each other at the oncologist's someday! I find that Kelly is the nurse to have. I don't even feel the iv going in, for the zometa, and she get's it the first time! The faslodex shots don't hurt as much as some of the other nurses there. I've been asking for her the past months since I first had her. My other favorite left. 

    I too am exhausted. My kids and husband tell me to go to bed, when I fall asleep in the recliner, in the middle of the afternoon. I go upstairs, and find I'm wide awake in bed. Just let me snore away and leave me alone! : )

    They also remind me when I repeat something I've already said earlier. I tell them to go with it and don't tell me I'm repeating it! I think I'm totally losing my mind sometimes at age 52!

    Having my scans in a couple of weeks. I hope they are right about it being an old cancer and not a new one! Fingers crossed!

    Good luck Pam!

    Lynne

  • Tree3
    Tree3 Member Posts: 45
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    hi Lynne, I, too, have often wondered if we'd run into each other.  If you recognize me from my photo please say hello.  I still have that hair style and I'm still tall.   I'm usually there once a month on Tuesdays, either at 1:15 or 1:45.   I've had a different nurse every time I've gone.  I think they do that so the nurses don't get attached to the patient.  But that's just a gues.  But I haven't had any problems with needles.  It might be because I have big veins and enough fat in all the right places.  Who knows.  One thing I don't like is they don't talk about markers like they did in Cambridge.  But I always worried about the markers too, and I don't worry anymore.  So, I guess that's a good thing.

    Good luck with your scans, Lynne.  Let us know the results.Teresa

  • 20130502
    20130502 Member Posts: 162
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    Hello all,

    I am officially a Fanny Pack girl as of today.  I started in the Paloma-3 trial - Faslodex + palbociclib/placebo.  I hope everyone will cross their fingers for me that I am on the "real deal" and not the placebo.  I did OK with my first day.  The second injection burned more than the first and is continuing to burn a little even now 7 hours later but hopefully that will fade and I am really glad to be back in treatment after the extended negotiations to get into the trial followed by the washout period.   

    Janet

  • Wilsie2
    Wilsie2 Member Posts: 240
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    I go back first time after starting Faslodex , two weeks from now. Started them in January. I have no idea if it is working or not, but do have the being tired and forgetful side effects. Glad I read the thread, thought I was getting senile.  Can doctor tell if it's working without scans? I read somewhere that TM may go up after starting the treatment, have you found that to be true?  I hope it's working, I sure don't want to have to back to infusion!

    Wilsie

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Welcome to the club!

    I am sitting here hydrating.... drinking a cold seltzer water while shivering from the cold. I am dreading this big meeting tomorrow following my injection, but I am prepared. Have my talking points, diagrams, computer graphics all ready to go. I am even bringing snacks and have the gluten free scones all done. [What is with this gluten free stuff? None of them have celiacs; they just don't eat wheat since it is poison. And these people all graduated from a very top university.]

    Hope Pam's appointment went well today, and that Tina and I have easy times tomorrow.

    *susan*

  • 20130502
    20130502 Member Posts: 162
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    Susan,

    Best of luck tomorrow.  I don't know about the scones - but I have a friend who is a true celiac and I can tell you that gluten free pretzels are really tasty (I only get a few because they are wicked expensive). 

    Janet

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Ah, I made the scones from scratch! I have friends with celiac and take that very seriously. This group is gluten-free as a lifestyle choice which is just not the same thing. I love all pretzels! Maybe I should make some soft ones, with mustard this weekend. Something to look forward to!

    *susan*

  • pajim
    pajim Member Posts: 930
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    It was a 5-stick day.  Sigh.   Plus the first blood sample hemolyzed requiring an extra hour in the waiting room.  On top of which I have a cold so being a good doobie I wore a mask for three hours.

    On the plus side, no pain, no problems.  And for the third iv stick they brought in a ringer.  Steven.  Most amazing iv stick I've ever had.  Too bad he doesn't place ivs for a living.  He said it was his first day, which predisposed me to him immediately.  (he was just kidding).

  • Leah_S
    Leah_S Member Posts: 1,929
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    So... third tx today, so far so good. My nurse is amazing - no pain.

    Susan, this "wheat is poison" fad is strange, to say the least. Didn't these people ever hear of "the staff of life"? At one time it was not only eaten by most people (western world) at all meals but also was the basis of the meal - and sometimes the whole meal.

    Leah

  • tina2
    tina2 Member Posts: 758
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    Susan, best of luck with your presentation today. As a witness to your persuasiveness, drive and attention to detail, I have no doubt that you will knock your audience on its collective fanny!

    Speaking of which, here I am alternating coffee with water here at the kitchen table, which is littered with sections of two newspapers, yesterday's mail, two containers of paint (samples to try on the bathroom walls), telephones, and a big note that yells "Hydrate" propped up against the salt and pepper shakers. 

    This will be my last onc appointment before my hip replacement surgery knocks my Faslodex schedule out of whack. I am a bit nervous about interfering with a process that's apparently served me well, but my oncologist maintains that waiting two weeks past the usual date won't pose a problem.  

    Tina

    P.S. Susan, I come from the land of pretzels. I love them in all forms.

  • 20130502
    20130502 Member Posts: 162
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    Tina, if it is any consolation...when you go on a clinical trial they wash you out for two to four weeks.  I don't thin

    k any MO is going to worry about a two week shift in timing when you have been stable so long....but I totally understand your concerns.  Hang in there ... It will work out.  Keep us posted on the surgery.  We are rooting for you!

  • tina2
    tina2 Member Posts: 758
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    Thank you, 20130502! My partner agrees with you and reminds me that my oncologist participated in the original Faslodex trials, so he must have a good idea of how much leeway in scheduling is perfectly okay. 

    I just want to get this hip business over and done. The surgery is early next month. My hope is that the procedure and my recovery will be so smooth that I will be covered in embarrassment to recall my current trepidation and fussing. 

    Tina

  • Tree3
    Tree3 Member Posts: 45
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    Tina, I think you you'll come through  this hip surgery and recovery just fine.Be patient with yourself and allow yourself time to heal.  We are here for you and anxiously awaiting your results.

    Teresa

  • Sue2009
    Sue2009 Member Posts: 96
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    I am due to start faslodex . The infusion center I will go to has only had one other person take injections there and she only had like three. Does this med really work? My dr says 2-6 yrs with treatment, very depressing.

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Sue,

    Welcome! Please make sure that you read the first page or so for the "tips" since I doubt your nurses will know them. For me, Faslodex works. Today was month 50 with no progression. In fact, scans are completely clean. Hope you get the same results.

    *susan*

  • Sue2009
    Sue2009 Member Posts: 96
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    sounds like I am eligible for same study, where are u doing it, I'm in Fl and was told yesterday. Just doesn't seem fair that anyone gets placebo.  Haven't started faslodex yet. Worried about hip pain, cause hips already hurt due to bone mets.

  • Sue2009
    Sue2009 Member Posts: 96
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    thanks Susan for response. Do you follow any diet regulations? I have 2 high schoolers, 2 undergrads & a son graduating med school this May. I really want to be around a long time for them. Unfortunately, I have had very bad luck with scans not picking up cancer since initial dx & then again with bone mets, on my 4th MO. Any advice appreciated.

  • susan_02143
    susan_02143 Member Posts: 2,394
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    My diet is that I eat. I cook almost every single meal from scratch. I eat lots of non-meat items. I avoid fresh soy. I enjoy an adult cocktail when I want one.  Sometimes I even eat bacon with eggs. Most of the meat that I eat I buy as a whole animal from the farm. But I do all of this because that is what I like. I have always eaten this way. I don't attribute my success on Faslodex to my diet. Nor do I blame my cancer on that diet. I am firmly in the "crap-shoot" camp.

    I have been wildly happy with my hospital. I get good care. But I live in a big city with LOTS of great options.

    We can talk about this more. Medical care is not the same everywhere.

    *susan*

  • tina2
    tina2 Member Posts: 758
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    Susan,

    How did your presentation go?

    Tina

  • pajim
    pajim Member Posts: 930
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    Sue, welcome, sorry you have to be here.  Faslodex is a pretty easy med, all things considered.  I've been on it a year with now-clean scans (may they stay that way forever).  You can train your nurses in how to do the injections. 

    I'm sorry your doc gave you any "time you have left".  We're very fond of saying that none of us comes with an expiration date.  I met a lady at a conference last year who has had Stage IV breast cancer for 15 years now.  I want to grow up to be just like her.

    As for diet, there aren't any restrictions.  The evidence says that a healthy diet and a healthy weight helps, but that's population-wide, not for any individual person. I follow about the same diet as Susan, though likely with more meat.  And maybe a few more adult beverages (I drink wine).  Many women change their diet a lot and feel it helps them a lot.  If you feel that way -- more power to you.

    Susan, I hope you kicked a$$ yesterday. Loopy

  • blainejennifer
    blainejennifer Member Posts: 441
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    Just had treatment  #11 yesterday. Had scans on Tuesday and was CONVINCED I had major progression, as winter has been long and hard, and I'm just so darn creaky.

    I am absolutely stable. TMs are stable at 170ish* for three months now, and the scans are completely unchanged. I am gobsmacked.

    Additionally, my favorite infusion nurse told me stories about two of her ladies who have bone mets with my kind of pathology who have been on Faslodex for several years now.

    How many of you have blubbed all over your MO when they told you good news?

    * Two years ago my TMs were 2,600, so 170 looks pretty good to me.

  • 20130502
    20130502 Member Posts: 162
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    Anyone heard from NickyJ lately?

  • tina2
    tina2 Member Posts: 758
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    Blainejennifer, 

    Good stuff! Enjoy, enjoy.

    Tina

  • Wilsie2
    Wilsie2 Member Posts: 240
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    I am afraid Faslodex is not working for me. 11 treatments, and my ascites is getting larger. I have onc appointment on the 18th, not sure I can wait. Also, found out why my hip hurts, osteopath says my hip is worn out. I am not a good candidate for hip replacement. I need some good news. 

    Wilsie

  • 20130502
    20130502 Member Posts: 162
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    Hey Wilsie,

    Don't know if this is good enough news - but my MO told me you can't tell with Faslodex for 4 months .... maybe it will turn around yet?  Crossing my fingers for you.

    Janet

  • Wilsie2
    Wilsie2 Member Posts: 240
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    thanks for encouragement   I am usually very patient, there are just too many health issues going on with me. Also, my blood pressure is through the roof, also unusual for me. I have appointment with my GP Monday. 

    W

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Tina, the presentation went fairly well. The missteps were not mine, and that is all I could ask for.

    Wilsie, I don't know how many months 11 treatments equals, but all the hormonals take some time to work. We can hope that you are just getting a delayed response.

    My blood work this month looks great until you get down to the markers. Another big jump up this month. But since I just had a PET scan two months ago which showed absolutely nothing, I am not going to worry. I have been experiencing both colds and increased allergies [cats are shedding] lately, and am assuming that the marker is just showing that my immune system is working overtime. Today is supposed to get WARM!!!!! All the way up to 45º which seems like a miracle. Hope to celebrate by taking a walk and soaking in some sun.

    Today, a year ago, I lost my father. I think a walk would be good for my soul.

    *susan*