Faslodex Girls

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  • aggy2001
    aggy2001 Member Posts: 8
    edited December 2012

    Hello girls,  I need to join you!  I am due to start Faslodex in a couple of weeks and I have been worried and frightened about painful injections and side-effects plus not knowing if it will work or not.  I have read some of your posts - thank you so much - and I already feel a little less fearful.

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

    Welcome to the group, Aggy. Faslodex is a relatively easy treatment that has proved effective at putting mets at bay for many of us. Plus there are all kinds of things you can do to help prevent/alleviate pain from the injections. One is to make sure the syringes are at room temperature before the injection. Another is to completely relax the buttock and leg on the side about to be injected. Grab a cup of something, sit in a comfy chair, scroll to the beginning of this thread and read through it. Then keep returning here for support, companionship and the inevitable occasional pun.

    Bottoms up!

    Tina

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

    Welcome!  It really isn't as bad as you may fear.  The injections aren't that fun, but I have had no side effects as compared to the alternative chemos.

    If you read through this whole thread, you will see a lot of helpful hints.

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  • EvaPerone
    EvaPerone Member Posts: 94
    edited December 2012

    Aggy: I believe Faslodex is the best of our options and feel fortunate that it is working for me. It is NOT cytotoxic, meaning it doesn't destroy cells as does chemo. Welcome and may you stay on the thread a long time. Happy new year!

    PS. Yes, I still bitch and moan about SEs but I get they're minor in comparison to the other options. 

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  • Tree3
    Tree3 Member Posts: 159
    edited December 2012

    Aggy , I've been on faslodex for two months with no side effects at all. And even if I did have side effects I'd be happy to have this miracle working drug.



    Good luck. Teresa

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  • SPAMgirl
    SPAMgirl Member Posts: 1,470
    edited December 2012

    I just got home from my shots. I have 2 nurses double team me at once. I can't believe the difference between the two. One goes slower. It doesn't hurt as much, but I also want it to be over quickly. oww

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  • Tish_13
    Tish_13 Member Posts: 67
    edited December 2012

    I had a bone scan this morning, what a way to send 2012 out. I always make sure the monitor is turned were I can see it...not that I can read it, but I can tell what parts light up on the screen. I also stopped by and talked with the clinical trial RNs as I am their favorite failure.

    Hang in there Ladies, May the needles leave no marks or lumps in 2113 and may the Faslodex be with you for a long time to come

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  • Tish_13
    Tish_13 Member Posts: 67
    edited January 2013

    I had a bone scan this morning, what a way to send 2012 out. I always make sure the monitor is turned were I can see it...not that I can read it, but I can tell what parts light up on the screen. I also stopped by and talked with the clinical trial RNs as I am their favorite failure.

    Hang in there Ladies, May the needles leave no marks or lumps in 2113 and may the Faslodex be with you for a long time to come

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  • Tish_13
    Tish_13 Member Posts: 67
    edited January 2013

    ops...I always post twice. Sorry about that.

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  • aggy2001
    aggy2001 Member Posts: 8
    edited January 2013

    Thanks all of you for the welcome, and I will take time to read more on this topic.  It helps a lot, I sometimes feel very alone with this as it's so different from recovering from primary breast cancer and living with ongoing treatment of that.  Then I could believe it might not come back, no chance of that now.  I was diagnosed with widespread lung and bone mets in June 2010, and I've had a very good response to Aromasin and Zometa, but now there are signs on the CT scan of spread to around my right kidney area, so docs suggest Faslodex.  Does anyone ever have Faslodex and Aromasin together? 

    Aggy

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  • Tree3
    Tree3 Member Posts: 159
    edited January 2013

    Aggy I'm taking both of them with no problems at all. Hope to be taking them for years to come

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  • sandilee
    sandilee Member Posts: 1,843
    edited January 2013

    aggy- My CEA numbers have gone fromm 268 down to 8 in the 18 months I've been on Faslodex (and Xgeva). I can only hope that I will be on this drug for a long time. Side effects are minimal- no real quality of life problems. I'm so grateful to be able to get this drug that has kept me stable for a year and a half.

    I hope you have great success with Faslodex.  Keep us posted!

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  • Lynne
    Lynne Member Posts: 641
    edited January 2013

    Hi Aggy,

    I started the Faslodex and Zometa this past June. I was having back pain the end of May and after x-rays showed a compression fracture on t9, they sent me for an MRI. Then they saw all the tumors in my spine as well as a mass in my right lung. I first had breast cancer 7 years ago. It was stage 1 and had not gone to my lymph nodes. I always thought if it came back, it would be in my breasts, and I would have a double mastectomy and chemo and be all set.

    The only side effects I have are hot flashes (which were just about gone after going into instant menopause when I had my ovaries and everything else removed 7 years ago to get rid of those estrogen ovaries, I was 43) and some joint and bone pain. I also end up with huge bumps where they gave the shots. They usually shrink by the time I go next month, but I'm going next week and I still have a lump (it's smaller than it was) on my left side. The shots hurt and they have to go slow because the liquid is like castor oil, tough to inject. I tried leaning on the opposite leg when they do it. It helps a little. I have the Zometa IV before the shots. That takes a half hour. I'm usually at the office for around 3 hrs (most of it waiting). First they take blood, then I see the Dr/PA then I have the infusion, then the shots.

    My first scan in Oct showed that it had shrunk all the tumors in my lungs and lymph nodes. It showed a couple new tumors in my spine on the vertabrae above and below the first one. I had another 2 kyphoplasties on those (I had one for the original T9) to strengthen them so they didn't fracture too. They are keeping me on the Faslodex for now. I'm having more scans done the end of the month. Hopefully, it's still working.

    I hope it works for you too! Good luck!

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  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited January 2013

    Lynne,

    I hope it continues to work for you.

    I was supposed to get my first dose of faslodex yesterday with my monthly zometa, but there was a question as to whether insurance would pay for it. At first they said I had to pay 1/3 of it. Turns out it's covered under Part B of medicare (same as the zometa) and I just pay a $15 co pay. So I get my first dose on Tuesday.

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  • Lynne
    Lynne Member Posts: 641
    edited January 2013

    Cheryl,

    Good luck with with your first treatment (my next on is Wed). I'm glad they are going to pay for it now for you. I haven't seen a bill from the oncology office, so I assume my husband's insurance is paying them (we're still paying off the $3000 deductible from last year that all went to my first MRI and scans). I pay a $50 copay each time I go into that office though. We decided to pick up the insurance from my work for just myself this year. So now it will go to mine first and his second. Hopefully, it's worth the extra cost. I'm trying to work as long as I can but the all day sitting is killing my back.

    I'll be thinking of you Tuesday! : )

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  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited January 2013

    Thanks Lynne

    Any hints on how to prevent or lessen side effects?

    I'm very lucky to have my insurance. I have a medicare advantage HMO, no deductible, $15 for PCP and specialists. ER visit just went up to $65. I pay a $50 co pay for PET/cat scan, (insurance covers $5,950).

    All this for only $143 a month.

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  • sandilee
    sandilee Member Posts: 1,843
    edited January 2013

    Cheryl, I don't know what side effects you experience, but I have found taking Benedryl (regular dose) 2 hours before my shots  really helps with swelling in the injection site, itching, and even some of the pain.  My doc recommended it, and it seems to be working for me.

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  • Aerial
    Aerial Member Posts: 194
    edited January 2013

    Aggy, welcome to the group.  Faslodex has kept me stable for over a year (15 treatments, I think--I've lost track).  I hope it works for you, too!

    Lynne--my monthly treatments with Zometa & Faslodex proceed just like yours.  (I'm ususlly there for three hours, as well).

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  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited January 2013

    Had my first shots of faslodex today.

    First the nurses sprayed my butt with a numbing med and then they  slowly injected 250 mg in each side. Didn't feel a thing, and I have had no problems so far.

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  • RangerMom
    RangerMom Member Posts: 604
    edited January 2013

    Great Cheryl - giving you a high five

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  • Tish_13
    Tish_13 Member Posts: 67
    edited January 2013

    With a heavy heart I send this note

    I most likely had my last Faslodex shots today. My bone scan shows a mixed results with 3 areas improved and 8 either new or worse than the previous scan completed in June. While I am being assured this is a moderate progression and there are many more drugs out there. I was hoping is drug would have been with me for longer than 6 months. I am sorting through my options. I also have to decide if I will return to my original oncologist who has been out on medical leave since I joined the stage 4 club or stay with the one who "inherited" me just as this diagnoses was made. Both are very good and very different in many ways...If I could mold them into one, I would have the best of both! Faslodex has been side effect wise a very easy drug, just wished it worked.

    Thank you all

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

    So sorry, Tish. It's impossible to know what's going to work with any of us until we try it. May your next treatment be the one that knocks those mets back for a good, long time.

    Tina

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  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited January 2013

    Tish

    I'm so sorry you didn't get more time on faslodex.

    There are so many meds out there now, and new ones coming out all the time.

    I hope the next one knocks the cancer out.

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  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited January 2013

    Thanks RangerMom

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  • Tish_13
    Tish_13 Member Posts: 67
    edited January 2013

    Thank you Cheryl

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  • EvaPerone
    EvaPerone Member Posts: 94
    edited January 2013

    Cheryl: Please keep us posted. I'm really interested in next steps as we will all face this at some point. Hang in, Eva

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  • RangerMom
    RangerMom Member Posts: 604
    edited January 2013

    Tish - what a real bummer and I believe that there are many more options in their bag of tricks that we can try. It's going to be okay, you will be okay, keep telling yourself that. It is the truth. I have to say that to myself when I feel i can't go on and it calms me.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2013

    So sorry Tish!

    Sure hope you can find something that will work better!  Meanwhile, your butt can recover!

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

    So sorry Tish that Faslodex isn't your perfect drug.

    Tomorrow is month 35 for me. This is the first time I have scheduled "real" life right from the hospital. I will drive two hours West after the injection and then be in rehearsals for 8 hours. And then the two hour drive home. I should crawl into bed at 12:30am. Please wish me luck!

    *susan*

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  • Tish_13
    Tish_13 Member Posts: 67
    edited January 2013

    Thank you Susan, Denny, RangerMom, Eva and Tina, for all the kind words and support. My next drug maybe Xedola, any one been there?

    While the CT shows no involvement other than bone, my tumor markers were high for the first time at 50 and for the first time EVER..I have high cholesterol!!!! I may add my cholesterol levels were better than normal back in May before I started Faslodex. The oncology pharmacist is checking that relationship out...the surprises just keep on coming!

    So here is to the on going search for NED and still looking for the Stable Boy, evidently good men are are hard to find and keep around.

    Luck and Love to you all!

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