Faslodex Girls

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

    You are both most welcome. Will look forward to hearing how you are both doing.

    *susan* 

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2012

    You're welcome and may we all do great on Faslodex. HUgs, Maz

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

    Okay, what's with the renewed surge of hot flashes? They had essentially stopped for at least half a year since I began Faslodex treatments, but in the past day or so they've returned, flushing my skin and tonight waking me in the middle of the night. I don't recall eating anything weird or doing anything out of the ordinary. The other odd aspect of this is that it's less than a week before my next injections, and when I had hot flashes before, they occured less than two weeks after the injections.

    I know this is not a big deal in the scheme of things, but I'm curious as to your experiences/theories.

    Tina (who should not be on the laptop at this hour)

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  • ductal
    ductal Member Posts: 65
    edited July 2012

    Tina, yes, faslodex has affected me the same way...I feel like an incinerator to the point of feeling sick.  It stays all month.  Lets hope it gets better!  Yes, I'm off to sleep too.

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  • SyrMom
    SyrMom Member Posts: 862
    edited July 2012

    Looks like I will be joining this group next week, following approx. 18 mo on femara/zometa.  The CTC & TM did a jump, so now I'm on to new territory.  All of your inputs have been most helpful .... I've read everyone of them!  Thank you.

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  • RobinNY
    RobinNY Member Posts: 766
    edited July 2012

    Hi Srymom

    I'm new here too....had my first loading dose and will be getting my second one this week. First one went great...hope you have the same results. I followed everyone's instructions about warming it and how to stand. It worked! Looking forward to a very long journey together on this drug.

    hugs!

    Robin

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  • ductal
    ductal Member Posts: 65
    edited July 2012

    Robin and syrmom, good for you, starting a treatment that could very well give you many years with your families.  Be very hopeful, but honest, can't wait to hear good news from you.  I have to be hopeful, I am doing this for a reason.  Take good ccare.

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2012

    Syrmom, Where are ur mets? I hope you do well on Faslodex. I had all my loading doses and then one more. It gets easier each time so far. HUgs, Mazy

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  • SyrMom
    SyrMom Member Posts: 862
    edited July 2012
    Once again, thank you for your support.  Mazy - mult. bone mets; however, now that the CTC changed, may have visceral involvement.  Will know more next month when I get scanned.  Frown
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  • RobinNY
    RobinNY Member Posts: 766
    edited July 2012

    Hi there

    Was wondering...what is Faslodex costing everyone?  I got my shot at the hospital...didn't ask about cost.  I will be on Medicare in November and my Advantage carrier told me less than $50 per treatment.  

    Hugs!

    Robin 

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

    Faslodex costs me nothing. It is treatment and therefore fully covered. I met my deductible on Jan 14th.

    *susan* 

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  • SyrMom
    SyrMom Member Posts: 862
    edited July 2012

    Well, received my first loading dose today and so far, so good.  I did walk afterwards and I think that helped.  Exhausted, but that's not unusual, probably more of an anxiety hangover!  I made sure the med was at room temp., can't imagine getting that cold!

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  • RobinNY
    RobinNY Member Posts: 766
    edited July 2012

    Glad your first dose was pretty easy for you too. My second is on Thursday , I will let you know how that goes!



    Hugs!

    Robin

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2012

    Syr..great

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  • DJ64
    DJ64 Member Posts: 152
    edited July 2012

    Is there anyone here who has done Faslodex twice?

    In 2008/09 I was on Faslodex 250 mg.

    When I progressed went to Femara and had 24 months - progression and stopped drugs using my own estrogen instead of using the drug estradiol.  I had 7 months before progression and went back on Femara.  The next scan showed more progression.  I stop Femara and requested to return to Faslodex now that it was 500 mg.

    My next ct scan showed stable.   My oncologist doesn't believe that it will last long.

    If you have tried Faslodex when 250 mg and then went back on at 500 mg.  How long did it last?

    Thank you.

    DJ 

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  • SyrMom
    SyrMom Member Posts: 862
    edited July 2012

    I don't know how accurate it is, but my understanding is they usually don't repeat the same tx that failed previously.  However, I did read the faslodex dosage had been changed by the FDA (2011 I think), that's why it's 500mg from the original 250mg and 3 loading doses.

    Can anyone out there report if after the last loading dose you experienced any negative side effects?  Seems like a lot of faslodex, but I understand why, need to get it going in the system. 

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

    Tomorrow is Month 28 for me. The few side effects are getting more intense, but my oncologist has been working hard to help me find non-drug methods to keep them at a minimum. Have to admit I always dislike having to go to the hospital. No way to pretend that cancer and I are not in a battle to the death.

    Lots of water tonight so they can get some blood.

    *susan*

    p.s. I never had loading doses. 

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  • DJ64
    DJ64 Member Posts: 152
    edited July 2012

    Dear Skymom,

    I was out of hormonal drug therapy options and that is why I inquired if I could try 500 mg of Faslodex.  I have used Tamoxifen, Arimidex, Faslodex (250 mg) Femara, drug break, Femara and Faslodex (500 mg).  It was to soon to try Aromasin as it is so closely related to Femara.  I am hoping Aromasin & Afinitor will be in the horizon.

    My oncologist doesn't believe Faslodex will work for long.  I am sort of looking for someone who has tried it a 2nd time around and could give me some idea.

    Thank you.

    DJ 

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2012

    DJ..I know all oncs are different but my onc said we can repeat an AI. I got 5 yrs out of Aromasin and have recently started Faslodex. Hugs, Mazy

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  • Judy1992
    Judy1992 Member Posts: 44
    edited July 2012

    Happy Friday!  Had my first loading dose of Faslodex today - nurse was terrific - didn't feel a thing.  I elected to have the two injections in my right "cheek" and then took a walk.  Have my first of 15 rounds of radiation to my left femur on Monday.  Thanks again for sharing your experiences, and espcially your tips - much appreciated!!

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

    Month 28: Tumor markers are back and I am sitting at Stable with No Evidence of Disease. Faslodex has been my miracle drug.

    Nurse Lauren, my oncologist's PA who has been on a maternity leave, did come back to see me. She had a simple question-- Are you loosing weight because you want to or is it just happening? On purpose I responded and off she went after showing me some baby pictures.

    Feeling mighty lucky right about now.

    *susan* 

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

    Susan,

    !!!!!

    Tina

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  • SyrMom
    SyrMom Member Posts: 862
    edited July 2012
    Fantastic, Susan.  I'm hoping to hear the same in 2 months when I get scanned!  Would be a "first" for me!  This defin. give me hope.Smile
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  • RobinNY
    RobinNY Member Posts: 766
    edited July 2012

    Oh Susan!  I have tears in my eyes for you!  This made my whole day!  I am at work, but the email came thru on my phone and I had to jump online and congratulate you!  Happy Dance time!

    I had my second loading doses on Thursday....never felt a thing.  Left hip/butt a little tender today, but I am thinking there is arthritis there and it aggravated it.  All in all....very easy.

    Hugs!

    Robin 

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

    I started Faslodex in March for a recurrence with mets in the lymph nodes behind my sternum.

    Had Aromasin, but mets kept growing.  Will have another scan in Sept.  No loading dose and I get 500mg.  I have butt pains for about 4 hours afterwards.

    Now, when I check in, I tell the nurse to note on my chart that I will gladly hold the vials in my pits to warm them while the nurses do their other stuff.  Speeds things up that way.

    I find the injection to be ouchy, and on Thursday, for the first time, I could feel the pain running down my buttock and down the upper thigh.  This happened on both sides. No big deal, but something new.

    Otherwise, this is a heck of lot better than "hard" chemo.

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  • DJ64
    DJ64 Member Posts: 152
    edited July 2012

    Dear Denny123,

    I began Faslodex in March with 500mg every 2 weeks until they finally morphed into once a month.  I used Lidocaine patches after the injection.  It takes the pain away.  

    My lidocaine patches are prescribe for an ankle problem PTTD (posterior tibial tendonitis dysfunction) which helps with the pain in the ankle on a daily basis.  I am afraid to have to many cortisone shots.  Doesn't take all the pain away but it helps.  I figure that I can spare one patch cut in half once a month to help me feel better.  Maybe you could ask your doctor to prescribe them.

    My last injection was the first time that I didn't have nausea, vomiting and overwhelming fatigue since I began.  I am really hoping for a long run on Faslodex. 

    I have a scan in September also.  

    Wishing you the best in this journey,

    DJ 

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  • DJ64
    DJ64 Member Posts: 152
    edited July 2012

    For Mazy1959,

    I am hoping to repeat all the hormonal therapies.  I had 8 years on Arimidex being NED after my 2nd recurrence (lesions in 2 ribs) showed up.  I don't believe Tamoxifen ever worked.  I am willing to give it another try when Faslodex fails.

    Aromasin is to close a relative to Femara and Arimidex for the time being for me.  There is another hormonal which was used many, many years ago.  Halotestin (Fluoxymesterone), it is a male hormone similar to testosterone.  I read on another mets site that this woman had 17 months with it.  My sister's late mother-in-law used the drug back in the 1970's and had 18 months with it.  I am willing to try that but the side effect is facial hair.  That one will need a real plan on what to do:)  

    My cancer is slow growing and I don't believe chemo will work for me.  I don't mind retrying all the hormonal therapies.  

    Best wishes to you,

    DJ 

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

    Thanks DJ,

    The nurses said that I could use Lidocaine cream before the injection, but I am never sure where the injection will be.

    The butt pain for 4 hours is deep within, so not sure the cream on the outside will work on that.

    It is pretty tolerable, though.

    I only had extreme fatigue after the first set of shots, and never nausea, TG.

    Good luck to you, too!  May we have perfect scans in Sept!

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  • Anne45
    Anne45 Member Posts: 1,037
    edited July 2012

    Congrats Susan 02413 to your excellent run with faslodex!!!   Wishing you many more years with faslodex! 

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  • EvaPerone
    EvaPerone Member Posts: 94
    edited July 2012

    Someone asked about cost - my insurance being billed $6457 for pharmacy and nursing costs to get monthly shots. Outrageous, no?

    I've been on Faslodex since May and I get a sulfur like smell around me for a few days post injection, diarrhea and loads of joint pain. I'm biking and swimming to counter the joint pain but still cannot get down my steps for first few minutes after waking up - and I'm 49. I also am back to hot flashes that had subsided with tamoxifen and femara, but are back to soaking me daily.

    But I want Faslodex to keep on working as I was rejected for a few clinical trials and dread returning to chemo.  Monthly shots with minimal SEs are as good as it gets. My medoc said I am his first patient to respond to Faslodex, here's hoping the CT in Sept is equally good!

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