Faslodex Girls

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

    Susan, I don't lose my appetite either! Oddly enough, eating something often helps calm the nausea, but I can't be eating all the time!

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

    Tina, I know.... I know.... eating during all our waking hours could be damaging to our self-image! Not to mention our pantlines.

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  • pajim
    pajim Member Posts: 2,785
    edited May 2013

    Tina, I had exactly this problem when I was having radiation.  Feels like your stomach is always turning over?  Some days putting something in my stomach all the time helped, some days it didn't.  

    I eventually took Zofran or kept a water bottle next to me all the time.  Water did the job of filling my stomach as much as food did.

    My personal advice is not to be afraid of drugs if they help.  No reason to suffer and stomach issues are the worst.  I do understand your wish not to take the serious drugs, but if it's only for a few days. . .

    Haven't had any trouble with fulvestrant but I've only had one dose.  Sounds like it's cumulative?  Ugh.

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  • EvaPerone
    EvaPerone Member Posts: 94
    edited May 2013

    Noting what countless others have, we're all different.

    14 months on Faz and no cumulative SE. I do get diarrhea for the first few days and big knots in my hips. Oh and my hot flashes kick in and then wane through the month and then start over at the next injections. But very livable.

    And for those having a tough time, don't fall into the tyranny of positive thinking. Feel what you feel and always feel free to dump it here. I cried like a baby watching The Big C last night. That show is nailing the indiginities and how people deal with cancer. Cheers to all.

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  • Tina72
    Tina72 Member Posts: 484
    edited May 2013

    I am wondering how long faslodex is working for people. I have been on it since July 2012.

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

    May 2010 for me. Next month is injection no 40 [I think.]

    *susan*

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

    Next month-June- is my two year mark. :) I just had scans last month, and I was so relieved that I'm still stable. 

      I really loved hearing that someone has been on this drug for five years. That would be amazing.

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  • chocolatesalad
    chocolatesalad Member Posts: 118
    edited May 2013

    Hi Everyone... 

    For me, it's too soon to see the benefits of Faslodex; I had my 3rd round of injections a couple of days ago.

    I am always falling asleep--with my bird(got to be careful), at computer, reading, etc! But maybe it's something else--I've been taking Tussionex-1 tsp. a day for cough--but will lay off of that and see if it makes a difference. I have 3-4 hr. naps per day--usually i dont nap at all. I think it was a few weeks ago when these sleep spells started...

    Anyone else super drowsy?

    love and best to all

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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited May 2013

    Tina2, you said ginger helps nausea. Have you tried peppermint? I discovered by chance that popping an Altoid helps my queasiness. Sometimes I chew 5 in a row. It esp. helps, in the car (motion sickness aggravates my nausea). Prescription-wise for nausea my doc has given me prochlorperazine maleate. It's prescribed for other things besides nausea too. Like other ladies, eating helps nausea, especially dessert, of course

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  • donsuzbee
    donsuzbee Member Posts: 129
    edited May 2013

    I have been on Faslodex since February, 2010. I amcurious about the buildup of depleting "all" the estrogen in our bodies. I know that is the idea with Estrogen positive bc, but as I get older am having additional problems that I think are a result of being on the Faslo 3 years. Any thoughts ladies?

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  • Tina72
    Tina72 Member Posts: 484
    edited May 2013

    Donsuzbee, this may be too personal, but what type of problems?

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  • donsuzbee
    donsuzbee Member Posts: 129
    edited May 2013

    No, not too personal. Mainly my body is so very dry in every way. I have a problem with itching in most parts of my body at various times, but mainlly my head. Onc nurse referred me to a derma tologist. He was of the opinion it was caused by one or some of my meds. But he said it would be too involved ti try to find out and not worth it.But I was on all of the ones I take before I went on Faslodex. (sorry for misspellings-this touchpad has a mind of it's own). Lots of aching in my legs.  Could be I am just tired of fighting this. Thanks for caring!

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

    The goal of faslodex is to shut down your creation of the B expression of Estrogen, so yes, it does affect your skin. Estrogen, it turns out, affects all kinds of things. I joke, wryly, that I am a 50 year old woman trapped in the body of a 92-year old. Some days, it pisses me off, but most of the time, I think the cost is worth benefits.

    I am too lazy to use loition. Someone else might be able to help with that.

    *susan*

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  • Michelle21
    Michelle21 Member Posts: 19
    edited May 2013

    I have flakes all over my scalp, dry as a bone nostrils, excessively dry eyes, and dry patches on my skin. I'm also too lazy to put on lotion, but short and sundress weather are here so I must. And my vajayjay is so dry that sex is almost nonexistent. No matter how much stuff i put on it is extremely painful. I have only been on Faslodex since September, 2012. I also have joint pain and body aches. But I can handle and take this any day compared to chemo. I do not do well on that. I wonder if there is a supplement that can help with the dryness from the inside out? Anyone know?

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  • M360
    M360 Member Posts: 356
    edited May 2013

    Tina,  I have nausea after injections immediately even with IV medication to stop such.  But I have a horrible stomach!  I wake up from a sound sleep the day after injection with dry heaves.  I found ice chips and popsicles also help me, the banana ones help me the best.  I also do the ginger chews, and ginger tea, I bring it with me to chemo and when I have my injections.  I too hate the compazine, and I have another one that they have given me, along with those cute throw away barf bags, I keep three or four in my car at all times.  Hope you start to feel better soon.

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  • Maycreek44
    Maycreek44 Member Posts: 1
    edited May 2013

    Not sure how to navigate this site, came on to see if anyone had bone pain from Fasloodex.

    Spent the weekend in bed with the covers pulled up over my head...I'm just so tired of fighting.

    I've been on faslodex 500 shots for a year and a half...with constant bone pain. I take oxycodone but it doesn't help much. And I just found out my Medicare wants a 20% copayment for these treatments every 4 weeks. I knew the plan was changing as of Jan. 1 but I was assured that it didn't apply to the class of drugs I take...WRONG! Just got done re-doing my mortgage but this will bankrupt me. Now I find that there are few plans to choose from if you are under 65 (I'm 58). Like I said, I'm just so tired of the fight. Thanks for listening.

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2013

    Maycreek, welcome to Breastcancer.org. We're sorry that you're dealing with this pain, and facing new costs too! Other members will be along to give advice from their experience to help.

    In the meantime, the Paying for Your Care section of the main Breastcancer.org site has information about medicine assistance programs that can help with co-pays and reduced or no-cost medicines. Scroll down the page Tips to Lower Medicine Costs to read more - including the plan to help pay for Faslodex.

    Best wishes,
    • The Mods

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  • marymoir
    marymoir Member Posts: 245
    edited May 2013

    Marycreek, I too have had bad bone pain since starting Fas.  SO much so that onc did scans to make sure no progression (none).  He started my on Celebrex which completely got rid of the pain for a while, but then it ticked up again.  Started me on a VERY low dose of Prednisone (5 mg twice a day), and that again completely eliminated the pain. 

    Not sure about the specifics of why those drugs helped, except that there must be some inflammation involved (I have bone mets, so it might be from the bone trying to heal as the tumors die, or might be from the bone mets themselves).  Might be something to ask your MO about.  Couldn't believe how much they helped! 

    Hope you can get some relief soon!  Other than the bone pain Fas has been pretty tolerable so far, and it's dropped my tumor markers from 300 down into the normal range in just a few mos.  Hope it will work well for you and that you can get the bone pain under control.  Please let us know how you're doing!

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  • snylander
    snylander Member Posts: 6
    edited May 2013

    I managed a little over two years before it failed. Which is two more years than I would have had. Worth it.

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  • EvaPerone
    EvaPerone Member Posts: 94
    edited May 2013

    Maycreek: I'm also on Faz and also fighting my state to force insurers to regulate premiums for those of us under 65 and on Medicare. What state do you live in? I'm happy to forward info as I research for my own. EvaP

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  • donsuzbee
    donsuzbee Member Posts: 129
    edited May 2013

    Thank you ladies for posting your experience with Faslodex. My onc put me on Fentanyl patches over a year ago. Since I have also had kidney cancer (not a met, thank You Lord) resulting in a right nephrectomy, I am limited to meds, especially Nsaids. Normal on the patches is 1 every 72 hours. I am now down to 1 every 48 hours. Plus hydrocodone 2 to 3 times a day. Patches are very low dose, 25 mcg. I have developed arthritis in my feet. I believe it is from the Faslodex. I have a topical gel, Voltaren, that I use on my feet. It helps.  

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited May 2013

    I joined the Faslodex club today. Two injections, smack in the old buttocks. I followed all your tips, and it was very easy, with no discomfort. Thank you very much.

    Man, I hope this works for me, as it is so easy compared to weekly Taxol.

    Off to go play in the sun,

    Jennifer

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

    Welcome to the Bottoms-Up Bunch, Jennifer! Hope Faslodex does the trick for you.

    Tina

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  • pajim
    pajim Member Posts: 2,785
    edited May 2013

    Welcome Jennifer.  I hope it works for you as well.  I'm only coming up on my third set of injections (next week), but there are women here who've been taking it for years.

    Speaking of which, does anyone else get little welts where they do the injections?  They itch like bug bites.

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

    <-- three years. 39 months. no evidence of disease. Hope it works as well for both jennifer and pajim.

    *susan*

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  • Aerial
    Aerial Member Posts: 194
    edited May 2013

    Welcome to our newbies in the "Bottoms Up Bunch"!  (Cute name, Tina...love it)!  I think it's been 20 months for me and the Faslodex has kept me stable and improved some of the mets in my spine!  I have had very few side effects from the shots--just some injection site pain and sometimes, a little lump has formed.  I try to massage the area and  it goes away in a week or less. (As part of my treatment, I get a Zometa infusion, as well.  The Zometa upsets my stomach and brings on flu like symptoms so, right before the Zometa, I get an IV dose of a steroid called Decadron and it has helped tremendously!

    Unfortunately, I know the agony of dryness in every mucus membrane.  Here's what helps me--

    Eyes--I use Systane ointment every night, the liquid eye drop version during the day, when needed.

    Nose--Simply Saline misting several times a day or a saline gel if it gets worse.

    Vaginal--My gyno doctor prescribes a tiny tablet (for insertion) called Vagifem.  It's an estrogen med but it's not absorbed into the blood stream.  I'm allowed to use it once a week but, I usually use it once every two weeks.  ("Liquid Silk" makes intimate encounters much more pleasant.)  Wink

    Skin--I use an Aveeno lotion style soap for extra-dry sensitive skin and an Aveeno creamy oil product after bathing.

    It takes a lot of work to keep my sixty year old body in decent shape but,  it's worth it because I feel better when I take the time!

    ((((Big hugs)))) to all of us facing the Stage IV cancer crap.  Take good care--you are worth it!

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

    Pajim, yes, I often get itchy, raised bumps after injections (their lovely red hue complements the purple bruises so nicely). I try not to aggravate them by scratching. A few applications of a clear, anti-itch Caladryl generic lotion usually takes care of them.

    Tina

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited May 2013

    Since I'm a newbie, I hesitate to suggest a change, but if we change it from the "Bottoms Up Bunch" to the "Bottoms Up Team", then we can be The Ladies from B.U.T.

    I felt pinprickly type sensations in the mets areas last night. Nothing bad, just very present. No soreness on my bottom that a few good stretches didn't take care of. So far, I'm a fan. And, y'all's advice was FABULOUS. I got the nurses to really warm up the vials, as they were going to just bring it to room temperature. And, instead of standing up, I asked to use an exam room so that I could bend over the table. They did the two nurse tag team, and the nurse that was the fastest, left the more uncomfortable injection site (resolved in just a few hours though).

    Thanks again!

    Jennifer

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  • pajim
    pajim Member Posts: 2,785
    edited May 2013

    @Susan -- Me too!

    @Tina -- great suggestion.  I'll get some lotion.  The bumps/itch didn't appear until a week after the injection, but I'm kind of weird.

    I found everyone's advice very helpful too.  The nurses actually knew all this -- they warmed up the shots themselves, and coached me in how to relax one side then the other.  I kept an eagle eye out.  Second set of shots was harder than the first.

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

    A reminder to all: do not let the nurses rush the injections! I have taken to reminding mine to do it as slowly as she can and ignore my biting my lip or uttering something unprintable because it smarts like !@%^*!. Nurses don't want to hurt you and so have a tendency to push the injection quickly, but I have found the slower it's given, the less butt and back pain I have afterward. The package insert instructs administrators to take one-to-two minutes for each injection, but mine never does. She says it's too hard on her hand! I don't call her on this because she's pretty decent in other ways--and she has shown me her reddened hand several times. ( I know, I know, it's nuts to think "poor her" when I'm the sick one, but I must choose my battles.)

    I sometimes wonder if all of us would have fewer SEs if the nurses administered Faslodex injections as slowly as the instructions indicate.

    Tina

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