Faslodex Girls

Options
15355575859

Comments

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


    I just went back through my records and found that it was 4 months before my tumor markers showed any downward motion; and 10 months before they were back to what became my new normal [ie. higher than my norm for the four years before that.]


    Hope this helps. Though, as you know, this is so individual I can't say that this is par-for-the-course.


    *susan*

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


    Crone,


    Conventional wisdom says that it's 'way too soon to write off Faslodex. It is notoriously slow to act, but many women do very well on it for long periods of time.


    On a personal level, tumor markers are not helpful, so my doctor depends on scans. I started on Faslodex in July, 2011. Scans at three months indicated nothing much had changed. Three months after that my lung mets had started shrinking and continued to do so bit by bit. At about a year and a half or so they had become shadows of their former selves and inactive on PET, and my doctor put me on a six-month scan schedule. I've been stable on Faslodex since then.


    With fingers crossed for you and me and all of us,


    Tina

  • kshammond1
    kshammond1 Member Posts: 35
    edited November 2013


    I just started faslodex in August. My tumor marker continues to go up but my PET scan showed the medicine is working. Today my marker is 788, up from 480. Anyone else seeing jumps like this? I am freaking out!

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


    I haven't seen any jumps like that, but I believe the rule of thumb is the scans trump tumor markers. Are your scans showing known spots that are diminishing or nothing at all?


    I would be freaking out as well!


    *susan*

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


    Hi kshammond, I can't help -- my onc doesn't measure my tumor markers. Well he did once, way back at the beginning, but they were barely out of normal range so he never measured them again.


    One prevailing theory is the Faslodex is killing the cancer cells, causing them to be in the bloodstream to be "washed out". I have ZERO idea whether that would be true.


    For a lot of women TMs don't mean much. If the scans are better, that's WAY more important.

  • kshammond1
    kshammond1 Member Posts: 35
    edited November 2013


    Thank you! I can't even reach my doctor today to ask them to rerun the blood work. He and his nurse took the day off.

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


    It's hard not to worry.


    I'll have to ask my onc how he feels about tumor markers. He's a minimalist at heart; I can see him not measuring just to cut down on the worry factor.

  • Nursie3263
    Nursie3263 Member Posts: 6
    edited November 2013


    Has anyone experienced nausea and/or loss of appetite on Faslodex???

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


    Nursie, yes, I have had intermittent mild nausea, very sporadic and easy to control with over-the-counter stuff like Emetrol and ginger chews/lozenges.


    As far as loss of appetite, no.


    Tina

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


    Hi Nursie, no, but I do get the metallic taste in my mouth. Lasts a day or two. I'm not sure if it's Faslodex or Zometa.


    Pam

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


    Nurise,


    I get what I call "rolling nausea" after my Faslodex shot. This is not a medical term, but instead reflects how I feel. Generally I get my shot at 10:30, and my nausea has calmed by 4 [after my nap.] The next two days I can feel unsettled. Day 3 and 4 are my fatigue days. Loss of appetite? I have taken more drugs in the last 8 years that claim that SOMEBODY gets loss of appetite, but that person is never me.


    I think we should get a Chinese menu with each new drug so that we can check off the side effects that we prefer. I would choose weight loss, and loss of appetite as my top preferences! ;-)


    *susan*

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


    I'm with you Susan! Right now anything that includes weight loss would be on my list.

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


    Interestingly, I was going to make a crack a la "I wish!" about Fasoldex causing weight loss when I posted here and something stopped me. I had a vision of my formerly plump Mom and two sturdy brothers in their last days with cancer, wasted away, cadaverous. And I thought, "Yes, Tina, you're really overweight and some of it is doubtless from Faslodex, but don't jinx yourself with a smart remark."


    Never thought of myself as superstitious, but one can't be too careful! ;-)


    Tina

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


    *knock on wood*

  • Nursie3263
    Nursie3263 Member Posts: 6
    edited November 2013

    Thank you ladies.

  • chris1959
    chris1959 Member Posts: 1,121
    edited November 2013


    just wondering if any one has experienced flu like symptoms for 1st 2 days after shot .I just had my second set of shots and for the 1st 2 days afterwards my body feels achy and bones hurt ,I do get nausea every once in awhile also ,but not bad.


    thank you chris

  • Romansma
    Romansma Member Posts: 1,515
    edited November 2013


    I get the flu like feeling but not till 2nd or 3rd day.

  • chris1959
    chris1959 Member Posts: 1,121
    edited November 2013


    thank you romansma ,


    i almost feel like i have felt worse since being on the falsodex ,but not sure if it is the medicine or my stress level lately .i have had a lot of stress so i will just give it awhile and see what happens .


    chris

  • Catesmom
    Catesmom Member Posts: 280
    edited November 2013


    Hi Chris, yes I always feel body achy and my bones hurt for a few days after my shots but it might also be the Xgeva??? Then it gets better. As far a weight goes, I have definitely put on some weight since going on faslodex, even though my diet hasn't really changed. Clothes are feeling a little tight...:). Kelly

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


    Catesmom makes a good point. Are they also giving you Zometa or Xgeva? Both of those commonly cause bone aches. I had them the first time but not since. Body is used to the invasion.


    If you look at the list of side-effects of these drugs it's very long. So anyone could feel anything! They could fade as you reach a steady level in the blood.

  • chris1959
    chris1959 Member Posts: 1,121
    edited November 2013


    thank you so much ,im not getting zometa or xgeva as mo says my teeth are to bad to have those .I wanted to get all my dental work done but mynew onc ,says because my last onc gave me zometa that she wont give it to me ..its so nice to have you all .


    chris

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


    Random Musings on Faslodex and Weight Gain:


    The reason my rear end is getting bigger must be the build up of scar tissue layers from 30 injections. It's sedimentary, my dear Watson!


    In fact, one might say that keeping my Stage IV breast cancer stable on Faslodex has given new meaning to the expression "living large."


    Grateful and growing,


    Tina

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


    Hi Faslodex sisters,


    I had my 30th set of injections yesterday, and today I feel like a mack truck hit me. I'm don't know if this is the flu, or if it's the Fas, because I've never had this kind of reaction on the drug before. I have to say I hope it's the Faslodex. I didn't get my flu shot yet, but this is definitely a reminder.


    My bones don't hurt, but I just feel extremely fatigued, have a headache, and my muscles are a bit achy all over. So why would this be affecting me like this now, when the first two and a half years on the drug were fairly easy?


    How are you feeling now, chris?


    Tina, I just realized I had my 3oth injection yesterday. We're on the same schedule, as I started in July of 2011, too.

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


    Hi, Sandilee. You're the one who started my other favorite thread: "What are you doing for fun?" Thank you for that.


    I think Faslodex has several cumulative SEs and one is fatigue. I find I'm losing energy earlier in the day right now, but I'm hoping it's because the days are so awfully short and things will improve post-solstice.


    Regardless, if your headache and muscle aches persist, get to your GP. Also, get your flu shot ASAP!


    Tina

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


    Tina, yes, you're right. I need to get my flu shot ASAP. Just as soon as I recover from my Fas shots!


    Actually, I'm feeling much better tonight. No headache, no other flu symptoms- just pretty tired. I went out to dinner with my husband tonight, which helped. :) I think this is just a reaction from the drug, and I'm spoiled because for the last couple of years, I haven't had any problems except a sore bottom.


    Hey, I'll take it, fatigue and all, as long as it keeps doing the job!

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


    Hi Sandilee, I'm approaching my 10th shot, which is way short of you. So far I haven't had any issues that I've noticed, but I could certainly believe there's a cumulative effect.


    I'm hoping to reach shot 30 myself, or match Susan, who has 40+


    Pam

  • Maureen813
    Maureen813 Member Posts: 2,893
    edited December 2013


    Has anyone had continuous headache from faslodex ? I have a headache that just won't quit and getting another shot in two days

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


    I have not had a headache on Faslodex. Thank goodness! Forty-some-odd months of a headache would be a very steep price to pay! I do highly recommend hydrating the day before and for several days following the shot. Seems to make me feel better overall.


    *susan*

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


    Maureen,


    No headache here, just butt and back aches. Have you ruled out the usual suspects like sinus issues, vision changes,etc.?


    (Can it be that you are on the same Thursday injection schedule as Susan and I?)


    Tina

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


    Me neither. Unless you count the pain caused by my not remembering a thing anymore. That's existential.


    We can all do si do together on Thursday. It's not my normal day, but MO out of town and NP had time Thursday. I have a 6:45am appointment-- horrifyingly early.

Categories