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Faslodex Girls Thread

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  • tina2
    tina2 Member Posts: 758
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    Leah,

    I have not.

    Tina

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Leah,

    Neither have I.

    *susan*

  • sespebadger
    sespebadger Member Posts: 11
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    Hello, Just checking in. I had my first two Faslodex injections (one on each hip) this past Tuesday in a private room next to the big infusion area I got my initial treatments in 4 years ago. I stood up and took the weight off each leg as the shots were done and it didn't hurt. I had a very nice nurse and talking to her was a good distraction. After wards I got a shot of XGeva for my bones, in my arm. It stung a bit.

    I also got results from my recent bone and CT scans and along with tumor of chest wall and cancer in breastbone and on a rib and enlarged lymph nodes in that area,  I now know I also have tiny nodules in my lungs and a spot on my liver they are not sure about and some enlarged lymph nodes in my abdomen and a crack in my breast bone. That explains my occasional pain in that area. Tylenol works best for that at this point.

    I was able to go out to an event the night of this first treatment. I drank lots of water and took a 500 mg Tylenol. It is hard to know if the headaches I'm having more often are  a side effect, or if it's just the stress of my diagnosis and work. I am cutting back at work, but I can't do it all at once, it will be gradual. And there's the stress of talking to friends about my diagnosis. Some know just how to say "how are you feeling" and "what can I do to help," and others are the kind I call cheerleaders who tell me about their friend who had cancer for 20 years and it wasn't really that big of a deal. I am now ready to tell those people, "We are changing the subject." It seems to me that people are so uninformed and really believe if I just try hard enough, I'll beat this thing. I wish that were all it took.  

    Thanks for all other helpful comments about how your Faslodex treatments are going... 

  • Maureen813
    Maureen813 Member Posts: 1,826
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    wow I'm so glad you asked that question. I've had ringing in my ears for weeks. So far they've done brain MRI and on my way to a ent specialist and ears still ringing

  • Leah_S
    Leah_S Member Posts: 1,929
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    I read on this site that some people had it with Femara so maybe with the hormonals it's one of those rare-but-possible things.

    I'll ask the onc when I see him in a few weeks.

    Leah

  • Maureen813
    Maureen813 Member Posts: 1,826
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    thanks Leah. I will keep you posted after my ear nose and throat check up next week

  • Maureen813
    Maureen813 Member Posts: 1,826
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    so tumor markers are up from 133 to 163 and doc sent for a pet scan today. I get results thurs. I'm starting to get the feeling that the med isn't the magic bullet I'd hoped for :(

  • Lynne
    Lynne Member Posts: 368
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    Well, I'm back! After my oncologist talked with the Dana Farber breast oncologist in Boston,they said that the cancer they found during my latest kyphoplasty, was an old cancer,not something new. I'll be getting my normal treatment on Friday. They'll keep checking me every 3 months with scans. I hope they are right! 

    Lynne

  • Leah_S
    Leah_S Member Posts: 1,929
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    I had my second set of shots on Thurs. This time I have an itchy rash in the injections sites. I've been taking Loratidine and putting on Fenistel gel. The sleepiness is back in full force, too. At least so far I haven't had pain from the injections (how weird is that?).

    Leah

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Leah,

    Weird, puzzling, annoying. I never know how I will feel month to month which can make planning a bit difficult. I made a HUGE error and scheduled a major presentation, in front of a fairly non-cooperative group, on the same day, after, as my next injection. Perhaps I didn't have my personal calendar active, perhaps I didn't notice, but I am stuck with this. I can only hope that this isn't a bad month. At least, I will be standing so no one will see me wince as I sit.

    The sleepiness is a given for me at this point, but most months it only lasts for a few days.

    *susan*

  • pajim
    pajim Member Posts: 930
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    I got the itchy rash a few times.  Over-the counter steroid cream will do the trick.  I only needed it a couple of months and each time it only lasted a few days. Maybe a week?

    Don't get pain either (knock on wood), so don't think you're too weird.  I just thank my lucky stars and the nurses.

    Lynne, glad you're back!

    Pam

  • Leah_S
    Leah_S Member Posts: 1,929
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    Pam, thanks for the tip about the steroid cream. I'll try it and see if it's more effective than the antihistamine gel.

    Leah

  • tina2
    tina2 Member Posts: 758
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    I fancy myself a realist about having serious treatment for a serious disease, but sometimes think I actually must be barging down Denial because of my actions. Like you, Susan, I have scheduled heavy-duty days just after my injections. I don't think this is unwitting, but because I now operate on the fact that I never know how I'm going to feel now and automatically assume the best. Sometimes this turns out just fine, other times not so well. The unpredictablity of how I will feel physically from day to day is so unsettling---is it the hip, the back, the cancer, the Faslodex?-- that the only way I can have any illusion of control is to attempt to ignore/dismiss it and try to carry on as before. 

    Rollin' down that river,

    Tina

  • sespebadger
    sespebadger Member Posts: 11
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    I just had my second Faslodex injections, and this morning I also got my clinical trial drug (or placebo, dang). Injections went well. Nurse said they would do them both at once, and I said, no thank you, one at a time please! I seem to be head-achey afterwards, but drank lots of water today and took a 500 mg Tylenol. Also started feeling very tired by about 4 hours later, but the show must go on, so I am up working tonight. I thought I felt a bit of a stomach ache this afternoon, so I am hopeful I am actually getting the clinical trial drug.

    I would say I didn't really experience any side effects in the past two weeks since treatment one. I can feel some pain where my cancer is, but Tylenol takes care of it. And I insist on one Ativan at bedtime......although my brain does wake me up every few hours, I can go back to sleep, and that's important!  

    Sorry I haven't changed my diagnosis yet, but I've been too busy with work....I'm with you all (breast cancer in my breastbone), tiny nodules in my lungs, and appreciate your good advice.

  • pajim
    pajim Member Posts: 930
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    Ladies, I've been on the Faslodex/Femara schedule for a full year now.  Occasional hot flashes, which flared for a month in November when I had my ovaries pulled but went back to "normal".

    Is there any reason on this earth why I should now [all of a sudden] develop night sweats?  The last three nights I've been waking up every couple of hours sweating.  Throw the covers off, wake up 30 minutes later freezing, pull them back on, rinse, repeat. The lack of sleep is making me grumpy.

    Our bedroom same temp as last week -- cooler even. 

  • tina2
    tina2 Member Posts: 758
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    Beats me, Pam.

    I'm not on Femara, just Faslodex. I haven't had the kind of night sweats you describe, just erratic (unfortunately not erotic) hot flashes, the timing of which is completely unpredictable. 

    Tina

  • Lynne
    Lynne Member Posts: 368
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    I've been on Faslodex/Zometa since June 2012, and I have been having the hot flashes/night sweats since the beginning. I had my ovaries removed 9 years ago (at 43 and premenopausal) when I was first diagnosed Stage I. I have been on Gabapentin 300 mg (4 pills a day) which has brought down the number of flashes, but I still have them daily, and yes, they are totally unpredictable! 

    Good luck!

    Lynne

  • blainejennifer
    blainejennifer Member Posts: 441
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    Kind of off topic, but I love the hot flashes as they are a symptom of estrogen depletion. I want more, please!

    Have you lost weight? Adipose tissue generates estradiol, so if you have less fat, it might mean less estrogen, which might mean increased hot flashes.

    I have found that I need to wear all natural fabrics to sleep in and use non-synthetic blankets. Anything that doesn't "breathe" seems to make the flashes so much worse at night. Also, some of those memory foam bed toppers seem to trap heat. I love mine to death, but have to cover it with an old wool blanket to keep it from making me even sweatier. Anything that keeps the sweat next to your skin is not going to be your buddy.

    Hope you get better sleep soon. It's hard to have your sleep cycle messed with.

    Jennifer

  • Tina72
    Tina72 Member Posts: 32
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    pajim I am on femara and faslodex too, for the past 18 month. I have a hot flash 1 hour after taking the femara, almost like clock work! I go through night sweats off and on too, not sure if it a good thing or not? My onc has a few ladies who got on this combo during clinical trials and they have been on it for over 4 years. 

  • pajim
    pajim Member Posts: 930
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    I've had flashes (mild ones) since I started Lupron six years ago.  Haven't really gotten worse.  This is the first time I've had night sweats.  Seemed odd to appear "all of a sudden".

    Last night was better -- I only woke up twice.  I guess this could be caused by something else sending my adrenals crazy (virus or some such?).  Or maybe I'm so tired I slept right through it. 

    If it keeps up I'll ask my onc next week.  He'll just shrug.

  • Wilsie2
    Wilsie2 Member Posts: 240
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    I seem to be having memory loss. Did we discuss that? I forget. Could not remember if my gas tank on the left or right side  I have been driving this car 5 years.  This scares me, but if it's a side effect, I can deal with it Wilsie

  • pajim
    pajim Member Posts: 930
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    I have memory lapses and focus issues.  Sometimes they are very scary.  When I'm DOING a task I'm as good as I ever was, but remembering which tasks to do?  Oy.

    My boss and I had a long talk about this.  I make a to-do list now, and he doesn't hesitate to remind me if he thinks I've forgotten.

    My onc said to think of them as "senior moments".  I almost hit him when he said that, but really he's right.

    FYI -- look at the gas gauge on your dashboard.  There will be an arrow pointing to the side where the tank is.  I never remember which side, even when my brain worked.

  • sandilee
    sandilee Member Posts: 436
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    Yes, I also have short-term memory loss which seems to be worse with this med.  And, intermittent night sweats.  If I get up to let the dog out at night, sometimes my top is so wet that I need to put on a new night gown before getting back in bed.

      Today was my 32nd treatment with Faslodex.  I think I'll have MRIs in March, so cross your fingers for me, everyone.  I hope I can stay on this drug another 32 months.

  • susan_02143
    susan_02143 Member Posts: 2,394
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    I have not had night sweats since I went through menopause "naturally" at age 36. For three years, I kept a spare set of jamas and sheets next to the bed. When I got up to go to the bathroom, my rather perfect husband would get up and change the sheets. I would switch my jamas, and sleep through the rest of the night. Of course, I now know that this is when my tumor started to grow.

    Hot flashes were a given while taking aromasin, a drug that I took for about 7 years.When we dropped the aromasin and I was only receiving Faslodex, the hot flashes went away. With the introduction of Graves' Disease, hot flashes started to sound good. I have been cold for over a year now, and only recently with an adjustment of my synthroid rx, I am finally feeling warm again. I no longer sleep with a sweater over my tank and shirt. I can go to bed without two pairs of socks. I take the good stuff wherever I can get them!

    My memory isn't too bad these days. Has been far worse.

    Lots of words.... hope it is useful.  *susan*

  • tina2
    tina2 Member Posts: 758
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    Yesterday I couldn't figure out why my feet and ankles were getting puffier by the day for a week and was casting about for something to pin it on-- Faslodex?  Arthritis? On a hunch I checked my laughably senior-size pill box and realized I had not put in my daily diuretic the last time I filled it. 

    What can I blame for this distractedness/forgetfulness this time?

    Oh, I know: the bathroom renovation!

    Tina

  • Leah_S
    Leah_S Member Posts: 1,929
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    Tina, we finished our bathroom renovation over 2 years ago, but I think I'll blame if for the memory lapses, too.

    Leah

  • Tree3
    Tree3 Member Posts: 45
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    good morning everyone.  I'm up early this morning because I slept hard almost all day yesterday after spending a week with family in the mts. Of VT where they skied and we all partied.  Brrr, very cold, snowy and windy.  It was my birthday.  I turned 74.  And,perhaps foolishly, I expect many more.

    I've been away for awhile because I felt "cookies" was ruling my iPad.  So......unknowingly, or better said, not knowing what I was doing,  I ended up removing all "cookies".  What a mistake that was.  It  also removed my connection to this site and once agin I was not being informed of your conversation. I think I have fixed it.  I spent last evening catching up on all comments and realizing how much I miss all of you and your wonderful words of wisdom.

    My treatment for the last 18 months has been both faslodex and Aromasin for cancer and Exgeva for bone strengthening.  My only noticeable side effects from either the faslodex or Exgeva,  is extreme constipation and weight gain.   Granted, I don't drink as much water as I should and am only now increasing my veggie and fruit intake.  My exercising has been horrible too, ie non existent, so I've hired a personal trainer to help me restore energy and movement.  I take a daily calcium with vitaminD, a vitamin B12, because I eat very little  meat, and folic acid because I like my wine and other imbibements,  if that is indeed a word.

    It's encouraging to come on this board and see how well you are all doing.  Susan, I agree, the leader of the pack.  The fanny pack.

    Lynne, I'm treating at your clinic, now mine, and was disheartened to read of your set back, but then to read that your second opinion helped you, gave me a sigh of relief.

    So, were all hanging in, and let's keep on keeping on.  My love to all of you.

    Teresa

  • Wilsie2
    Wilsie2 Member Posts: 240
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    can I blame my tiredness on Faslodex?  Seems like I am only good for a half day of moving around, just going to the store or running errands. Then I am good for nothing, even if someone wants me to something fun. I know I should be getting more exercise, but just too pooped.  Any comments?

    Wilsie

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Welcome back Tree! So good to hear from you. A week in Vermont sounds wonderful, but very cold. This has not been an easy winter at all. We celebrated my Mother's 76th birthday last night; her first birthday as a widow. Had a wonderful time and laughed and laughed.

    Wilsie, yes, you can blame the Faslodex for your fatigue. For me, it did get better as my body learned how to deal with the drug. Can't remember how many months it took, but there came a day when I was not as tired all the time. I still have a few exhaustion days every month. Given the results, I can certainly live with that.

    *susan*

  • tina2
    tina2 Member Posts: 758
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    Tree, what a treat to read your message this morning. As sueopp would say, it's good to see us all keep on truckin'.

    Wilsie, I get super-tired, too, and usually try to bull through it. Sometimes I just can't and feel whiny and whimpery, like a baby past its naptime, but I refuse to nap; it's something I just can't do. 

    I don't know if the tiredness is from the Faslodex or my arthritis or the NSAID or the weight gain or aging, but I'm inclined to believe it is all of the above. 

    Lovely, eh?

    Tina