Faslodex Girls

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  • SyrMom
    SyrMom Member Posts: 862
    edited September 2012

    RobinNY ... so sorry to hear.  What a shame as I don't think the faslodex even had time to start working.  If it were me, I'd ask that question.  Hang in there.

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  • SyrMom
    SyrMom Member Posts: 862
    edited September 2012

    RobinNY ... just thought of something ... the study with faslodex and arimedex taken together; perhaps that might be an option for you!

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  • llanabeth
    llanabeth Member Posts: 101
    edited September 2012

    Looks like I will now belong with you gals!  Starting Faslodex in a couple of weeks and something else (Every 4 months).  My onc wants to make sure my ovaries arent doing their job!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2012

    llana,

    Though I am sad that your treatment failed you, I certainly hope that Faslodex works well for you. I had almost no side effects for the first two years. The ones I have now I can live with-- after all, my scans can not find any mets.

    *susan* 

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  • RobinNY
    RobinNY Member Posts: 766
    edited September 2012

    Hi Everyone

    Saw the Onc yesterday.....TM's went from 400 to 700...that and the new lump in my neck has me scanning next week.  We talked about all the options...doing another hormonal or jumping to chemo.  His first choices for chemo are Taxol or Xeloda.  I did Taxol back in 2000...and got great results.  Glad to hear its an option again.  I won't be making any decisions until after my CT is back.  My TM's started rising last November but progression didn't show till July.  I worry that my treatments have not been effective for 10 months!  So far, my progression has been slow moving and I don't want it to become a runaway train!  I am leaning towards chemo at this moment...and have alot of board reading to do between now and the 17th when I see him.  But, no new drugs till we get back from the cruise.  Either way, I will be leaving this board.  Thanks to everyone for the friendship and all the info.  Blessings to you all that Faslodex will continue its magic for you.

    Hugs!

    Robin 

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  • llanabeth
    llanabeth Member Posts: 101
    edited September 2012

    Thanks Susan, Tamox and I had a great relationship for 2 and a half years.  So it's all good.  Hoping this one hangs around longer! :)

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2012

    Watching "Stand up to Cancer" while I write this-how appropriate!

    Have been on Faslodex since March for Anterior mediastinal/prevascular nodes, and had my PET scan today.

    My largest node has increased from 0.9 x 3.4 cm with SUV of 8.6 to 1.5 x 3.5 cm with SUV of 10.4.  This was after 6 months of Faslodex.

    I will see my onc on Sept 14 to see what he wants to do.  But I am thinking that maybe he might allow me to stay on Faslodex for another 6 months.

    Anyone have thoughts on this?

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2012

    Denny,

    I have no idea; just haven't come to this fork in the road. Wonder about adding Armidex to the mix? The most recent study shows that this can be more effective than Faslodex alone.

    Let us know what you and your doctor decide what to do.

    *susan* 

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  • Annie62
    Annie62 Member Posts: 1,081
    edited September 2012

    I'll be joining you on this faslodex group. Hopefully I'll have a long run on it.

    I read the entire thread (yes, all 20 pages!) while commuting this week. Gold star for me.

    Thanks for all the tips and info. It's very helpful. I've been lucky so far. Fairly painless injection, a nurse who knew to warm it and have me shift my weight. I did have a big bruise (weirdly perfectily square), on one side but it didn't hurt. Was a bit achy in the lower back, pelvis and femurs  but not too bad. I think I may have lucked out since I was taking Claritin for post nasal drip and I read early in the thread that taking claritin can help with the SEs.

    I look forward to getting to know you.

    Annie

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2012

    Thanks Susan!

    That sounds better than dropping Faslodex and going onto a harder chemo.

    The only SE I now have after 6 months is a permanently sore butt.  But no biggie....

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2012

    Welcome Annie!

     Good luck!

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  • Tina72
    Tina72 Member Posts: 484
    edited September 2012

    RobinNY, I hope the faslodex is working for you. My TM went up after starting it too. I take femara, faslodex, and zolodex. My last appointment Friday showed my TM dropped 800 points. The onc talked about the TM spike then drop? Not sure why? But it did take a couple months.

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  • EvaPerone
    EvaPerone Member Posts: 94
    edited September 2012

    Tina: You're taking femara, faslodex AND zolodex simultaneously? Next scan on Wed - fingers crossed. EvaP

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  • Tina72
    Tina72 Member Posts: 484
    edited September 2012

    Eva, yes I get all three. Hope your scans are perfect!

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  • EvaPerone
    EvaPerone Member Posts: 94
    edited September 2012

    Tina: Ha, I'd settle for stable. Wow, your regiment gives me food for discussion with my doc. 

    Anyone else combining several endocrine treatments?

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  • Tina72
    Tina72 Member Posts: 484
    edited September 2012

    Eva it is something really new it came out in an article August 1st and my onc had already known about it and I started July 31st. I will try to find the article.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2012

    I too was on an AI plus Faslodex but begged to go off the AI as my hands got worse and worse. Still not sure I made the right choice, but I made it.

    *susan* 

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  • Annie62
    Annie62 Member Posts: 1,081
    edited September 2012

    Had my second faslodex shot today. My onc was ill and they wanted to reschedule me to next Thursday and I said, I'll see her on Thursday and get the first Xgeva then, but I want to stay on schedule with the loading shots. They checked with one of her colleagues and he agreed.

     So far so good. I've had no injection pain (today I warmed the shots in my hands), and aside from less appetite and aches and pains that tylenol can handle I haven't had any SEs. Hopefully it will stay that way!

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2012

    I saw my onc on Friday and since my biggest nodule only grew about 1/2 inch in 6 months, I can continue on with Faslodex!

     What is weird is the the nodules are to left of my chest center, so kind of over my heart.  ewwwww

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  • EvaPerone
    EvaPerone Member Posts: 94
    edited September 2012

    Congrats Denny123, on my way to the onc now. Fingers crossed I can stay on faslodex.  Though one little bitch, after my latest shots on Fri, everything tastes sour. Hope it goes away as I am flying to Istanbul today right after I see the doc!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2012

    Oh, Instanbul sounds perfect right about now. Will you see stagefree while you are there? Have a wonderful trip!

    Nothing so exciting for me. Off to my PET scan to confirm that Faslodex is still working. I was able to push this scan out to 9 months, so my oncologist was not that interested in further discussion. Doctor's appointment on Thursday for the results. 

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  • Annie62
    Annie62 Member Posts: 1,081
    edited September 2012

    Denny- that's very good news. So glad you can continue on the Faslodex.

    Eva - have a great time in Istanbul! Sounds fantastic

    susan - Sending vibes your way for a great scan!

    annie

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2012

    Thanks Eva-how did your scan go?  The only thing I can't tolerate is coconut flavoring.  I had ordered 2 24 packs of k-cups from Keurig with coconut flavoring and now can't stand it.  Used to be my favorite.....durn.  Have fun in Istanbul!!!

    Susan-please keep us posted!

    Annie-sure hope it works for you!

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  • BaseballFan
    BaseballFan Member Posts: 859
    edited September 2012

    I'm starting to panic.......I just got my TMs back and they have skyrocketed.  There was a slight increase last month, but this month they jumped 500 points.

    I had the loading doses on July 24, August 7 and 21.  My first "monthly dose" was September 18.  I've heard you have to be patient with Faslodex.....but right now, I'm scared and worried.  I feel fine....at least until I got the last TM results......

    I'd appreciate hearing about your experiences with the first few months of shots and how long it took to "kick in".

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2012

    Bobbi,

    My numbers started to come down immediately, and I had no loading doses. BUT, please remember that I had a very low tumor load and a stupid, slow cancer. Your anxiety doesn't feel "over the top" to me. We all watch those numbers as an indicator.

    I can recall reading that others have experienced a number flare while the Faslodex was doing its job correctly. Wish I could remember WHO but my brain just isn't retaining that stuff anymore.

    We are right here while you wait this out.

    *susan* 

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2012

    Nurse Lauren just called me. The PET scan is completely clear. This means that the last PET to see any mets was in May 2010. Fascinating how prepared I was for very different news. So Faslodex and I will continue to waltz together for at least another 6 months.

    I am stunned by my good fortune.

    *susan* 

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  • RobinNY
    RobinNY Member Posts: 766
    edited September 2012

    Congrats Susan!  Great news!  Here's to many more waltzs for you and Faslodex

    Hugs!
    Robin 

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  • Tina2
    Tina2 Member Posts: 2,943
    edited September 2012

    Wonderful news, Susan. Enjoy!

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  • Tina72
    Tina72 Member Posts: 484
    edited September 2012

    Susan, that is so great! I am so happy for you!

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2012

    Yay Susan!

     Bobbi-you will be in my prayers! My CA27-29 is only 24 in spite of progression.  So my TM's are no longer accurate.

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