Faslodex Girls

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

    MKL,

    I'm having trouble with my emotions too. I'm tempted to blame the Faslodex, but we have big stuff going on in our lives with this diagnosis.

    Does anybody else get grumpy and blue on this stuff?

    Jennifer

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  • MKL
    MKL Member Posts: 34
    edited July 2013

    Hey Jennifer...I also blame alot of this to Faslodex.   They gave me adderall to help with feeling tired, but it does nothing for me for the depression.   I take 1/4 of a pill the day of my shot and the day after.  I took one pill months ago, and I felt like I was flying around the room....I'll never do that again..since then it has been 1/4.

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  • MaryLW
    MaryLW Member Posts: 2,172
    edited July 2013

    I'm grumpy and blue, but I don't really think it's the Faslodex. I'm having a hard time with the stage 4 diagnosis, but then I feel guilty and selfish for feeling bad! I think about all the young women in my situation and don't feel like I have a right to feel bad. My family and friends are very supportive, but I don't feel like I can be honest with them. One daughter has bought into all this positive thinking philosophy, that I really feel like I'm letting her down if I'm not upbeat all the time. I'm so tired all the time, which doesn't help the emotions.

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

    The cause could be Faslodex or the diagnosis or mere existence, but I believe that if we didn't feel down periodically while living with a sword over our heads, we'd need those heads examined!

    Tina

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  • Annettea
    Annettea Member Posts: 21
    edited July 2013

    Hi,

    I think it could be the faslodex that makes you feel depressed and blue. I notice I could cry for no reason and feel really sad it comes and goes. It's hard not to be sad nobody knows how we feel but us gals that are going through this. My nurse that gives me the shots said we are champions and I said we do what we have to do to live. I can cry right now just writing this. I thank God every day he gives me.



    God bless us all

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

    It could be any of the anti-hormonals.  I felt different on letrozole than I did on tamoxifen.  Oiler skin, weird mind games, dandruff.  Faslodex might or might not add to that.  My memory is shot though I'm OK on the depression front.

    The drugs are totally messing up our hormones.  Not a surprise that they make you feel blue, or high, or brain dead, or just about anything else.

    Drug side effects are a convenient excuse for just about anything.  And I use that  Cool

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  • Lynne
    Lynne Member Posts: 641
    edited July 2013

    Well tomorrow is scan day. It's been a year since I got diagnosed with mets in my spine and lungs after my initial diagnosis 8 years ago. I started Faslodex and Zometa then too. I'm hoping I can stay on this treatment for a long time. I asked the oncologist how long is the longest she knew of someone had been on Faslodex, and she told me 10 years, but the average is a year. I hope I'm above average! I'd at least like to get through the rest of this year on it. Lots of things coming up celebrate. Our youngest graduated high school a few weeks ago. That was one of my celebrations, I know have 2 more. Even though I really hate those shots (I wish they could put it in through the iv like the Zometa!) , the treatment isn't as bad as others, and it's only once a month. The hot flashes and achy bones stink too. Oncologist appointment (with the scan results) and treatment on Fri. I'm definitely asking for the nurse that did the shots the best for me. I will no longer allow the nurse I had last month (and most of the other months) to give me  my shots. Last month I had a 4x2 inch bruise and lump that lasted 3 weeks (there is still a smaller lump on my left hip). It really hurt going in too, and I told her so. She's done. I'm asking for Jane (her name) who causes no pain! : )

    Wish me luck!

    Lynne

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

    Good luck, Lynne. I have found that even the most experienced nurses can cause pain with this injection--it may be inevitable-- so do insist on Jane!

    Tina

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

    Just got back from the MO's, and my tumor markers have gone from 140 to 50 in the second month of Faslodex. No big SEs, besides joint pain and the odd grump attack. Oh, I do get the stinky pee the first week after treatment.

    I think I like this stuff.

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  • MaryLW
    MaryLW Member Posts: 2,172
    edited July 2013

    Yaaaaayyy! Great news! 😊

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  • hollander
    hollander Member Posts: 213
    edited July 2013

    Wow!!!  That's terrific news!  I hope the magic works for you for a long time!

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

    Con gratulations!

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

    blainej,

    That is fantastic news!

    *susan*

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

    Wonderful news, Jennifer! Stink on!Wink

    Tina

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  • marymoir
    marymoir Member Posts: 245
    edited July 2013

    Congrats!!! Love hearing good news here in the Fanny Pack!



    Just had my 9th shot today. Tumor markers cut I half once again!!! Still having probs with bone met pain when I do too much physically (like riding in a car for almost 3 full days last week, spending an entire day walking around Williamsburg, going for a long bike ride, etc).



    But I do find there are days when I feel depressed for seemingly no reason. Yeah, I know I have a terminal illness, but I don't think that's causing these funks cuz when they hit I'm usually not thinking about the crappy C (or anything else that would tend to make one sad). I'd also wondered if the Fas might be the culprit.

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  • hollander
    hollander Member Posts: 213
    edited July 2013

    Had my 7th shot today-- easiest yet!  Got PET results, and the good news was that there's no significant activity with the lung nodules, and there's no new activity in liver, etc.  But... there was an unclear area in my pelvis that I had to have x-rayed.  It could be related to a fall from last week, or it could be something else Frown.  MO's office should get the report by the end of the day, so I hope to know more before I (try to) go to sleep tonight.  They were anxious to get that looked into asap, so I didn't have any question time, which was frustrating. Guess I'll get that time when I get the new results.  Hurry up and wait... the fun just never ends on the cancer ride!  I'm afraid to even think about googling what  this pelvic activity could be.  Thanks for all of the Fanny Pack support-- y'all are the best!!

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

    Good news on the PET!  if they just want to x-ray maybe not cancer related? Not so long to wait.  Hang in there!

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

    Had my 25th set of Faslodex injections today. No pain, all went well.  I am a little nervous, however, as my CEA markers, which have gong down steadily since on Faslodex (from 260 at my peak, to 3.9 in January of this year) have been creeping up since April - 4.6 in April, and from last month's report, 20!  Noooo!  I'm back in the double digits!   :(   I don't like this trend at all.

      I see my onc next Friday. He'll be scheduling scans for September, probably, as that would be the six-month mark.  I really hope my CEA starts back down again,but I'm not optimistic. I've already had a good run on the FAslodex.  I hope I get to stay on it a bit longer, though- at least through my scans in September.

     I wonder what the next treatment will be.

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  • MaryLW
    MaryLW Member Posts: 2,172
    edited July 2013

    My CA 27-29 numbers went down this month, but my CEA numbers went up. Does anyone know the difference between these tests or what that discrepancy might mean?

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  • hollander
    hollander Member Posts: 213
    edited July 2013

    Well, glad this week is over.  Just heard from my MO's office that the little spot on my pelvis is a progression.  So the Faslodex is helping with some things (lung mets are stable), but now I have bone activity.  No pain or other symptoms, so I'm glad it showed up on the scan!  Starting on Aromasin, and will start on either zometa or xgeva when I go for the next faslodex injection.  I'm kind of numb right now- glad it's the weekend and I don't have to deal with work for 2 days.  And my tumor marker changed for the first time-- went up to 60.  It's always been normal before now. Crazy.

    Just hoping and praying that adding these new drugs will help, and won't have many side effects.  I'd love to hear from anyone who's been on this combo.  Thanks!!

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  • Tree3
    Tree3 Member Posts: 159
    edited July 2013

    Hi Hollander, I have cancer to lungs and spine and have been on Aromasi and faslodex since last October with very few side effects. Originally I was also on zometa for a few months but it was affecting my kidneys so they switched me to xgeva. Still no side effects. And I feel great.

    Hope this helps.

    Teresa

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  • bhd1
    bhd1 Member Posts: 3,874
    edited July 2013

    this is probably a dumb question.  if i were on faslodex alone  for mbc and aquire a new stage 1 tumor in the other breast , is this progression?  shouldn't  the faslodex have  prevented  cancer from occuring in the other breast if it were working?

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

    bhd1, Your sig says you are ER-and PR-.  I'm not sure Faslodex would work as well for you as it's purpose is to block estrogen from feeding the tumor.

    I know that if you weren't Stage IV a new tumor in the other breast would be considered a new cancer rather than a recurrence of the old one.  No idea what it means for Stage IV patients.

    So this is a long winded way of saying I have no idea, but I'm sorry there's a new tumor.

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  • bhd1
    bhd1 Member Posts: 3,874
    edited July 2013

    I am sorry panini it is not I who has the new tumor. It is a friend.

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  • hollander
    hollander Member Posts: 213
    edited July 2013

    Hi Teresa--

    Thanks for the encouraging words.  New treatments are always a little scarey- guess it's the fear of the unknown.  I'm feeling optimistic that the Aromasin will get to work and cut off the food supply to those annoying little spots.  Hoping to find NED soon!

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  • milehighgirl
    milehighgirl Member Posts: 444
    edited July 2013

    Hello ladies,

    I had my third loading dose this morning.  All the bloodwork was good, except my tm went up to 91!  A month ago it was 62 (first dose) and two weeks prior it was 51 (no meds).  Many of you said your markers went up in the early going.  I'm a month into this so should I be concerned or do I just hang in there another month to see if this stuff kicks in.  I so want this stuff to work!

    Sue

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  • FridayGirl
    FridayGirl Member Posts: 173
    edited July 2013

    Milehighgirl, please don't worry too much about your tm in the early stages.  I had my fourth dose today and asked what my tm had been the previous time.  They told me that it had dropped to 106, and had peaked at 112 the previous month.  I was concerned about that but the oncologist said that in the early months the tm is all over the place, so not to let it get to me.  If the tm did not drop in a few months time they would investigate it, but for now I was to try and relax over it.

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

    Sue,  another reason not to worry is that for some ladies tumor markers don't mean a thing.  They don't correlate with disease at all.  For other ladies they correlate very well.  Do you know yet which "camp" you fall into?  If not, then you should particularly not worry.

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  • milehighgirl
    milehighgirl Member Posts: 444
    edited July 2013

    Thank you all.  I was hoping for those answers!Laughing

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

    I have resisted posting this question for weeks because I don't want to frighten anyone who's just starting Faslodex treatments. Newbies, please know that many people do not get any side effects!

    That said, has anyone here experienced sporadic severe, explosive vomiting and diarrhea with a low-grade fever and headache? I mean not being about to keep anything down or in for several days. I have NEVER had any stomach or digestive issues in the past, but this has happened several times in the last treatment year, each time worse than the last. I know several times doesn't seem like much, and I sound like a whining baby in light of what some women in this forum are going through, but this month's episode took me out of action for five days, and was a most unpleasant way to lose seven pounds. (I've since gained most of them back, of course.)

    Frankly, I have been hoping that I had food poisoning or a virus in all these instances, but since I have always had a cast-iron stomach I am wondering if that has been a form of denial on my part. I see that these ailments are recognized possible SEs of Faslodex. But why now and why so sporadic?

    Anticipation of this occuring again together with the regular back pain from the injections is putting me into a state of dread. And, again, I feel churlish for complaining when I've had such a relatively
    easy ride compared to some.

    Thoughts?

    Tina

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