Faslodex Girls Thread 2014

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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    parakeetsrule, I have had a swallowing issue for quite a while, but I’ve only been on Faslodex since September, so that’s not the cause for me. I don’t find it’s any worse being on Faslodex. It’s just not fun. I don’t have an answer for why mine is like that. We’ve done different tests and can’t figure it out.

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  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited January 2022

    I should probably ask my doctor. I don't know exactly where the nodes are with cancer in them so it's possible they are squishing my esophagus or something. But it would also help if I could NOT be overly aware of swallowing every single time I swallow because I'm sure that's not helping! :)

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  • cowgal
    cowgal Member Posts: 833
    edited January 2022

    ParakeetsRule - I have a little bit of difficulty swallowing sometimes. It is not my whole throat but an area on the left side of my upper esophagus. In my case I know it isthe radiation damage from when my collarbone got radiated in February through March of 2020.

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  • Rosie24
    Rosie24 Member Posts: 1,046
    edited January 2022

    So my ER flipped to negative with my recent biopsy so I’m no longer going to be taking Faslodex. On to something for triple neg. 😳. Good luck Everyone

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  • cowgal
    cowgal Member Posts: 833
    edited January 2022

    Good luck to you too Rosie with your new treatment!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2022

    Rosie24,

    Whiplash! My mind boggles at news of receptor status switches. Glad you found out and can address it with a new treatment.

    Tina

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2022

    Rosie24,

    Whiplash! My mind boggles at news of receptor status switches. Glad you found out so it can be tackled with a new treatment.

    Wishing you the best,

    Tina

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited January 2022

    Hey everyone!

    I've been on Faslodex 13 months....just had my 13th round on Friday.

    This may have been discussed already....but does the stinky pee seem to get worse at times? My body odor seems stronger than normal in general. I'm working at being more intentional about drinking water, hopefully that will help.

    Just curious if anyone has noticed stronger body odor?

    Kinda TMI....I know.

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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    tangandchris, I definitely notice the odor when I pee. I haven’t noticed body odor, but I’ll have to keep an eye on that. I don’t know what would help

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  • star2017
    star2017 Member Posts: 827
    edited January 2022

    I've been on Faslodex since June 2021 and never noticed the pee odor. I'll pay more attention next time bc I'm curious!


    Generally the experience isn't too bad for me, but some months the shots hurt a lot and some months I barely feel a thing. I think it's all about angles/positioning. The one time the pain was worst, I also felt the nurse was a little flighty and inattentive. I mentioned the pain to her in the moment and she was a little dismissive, whereas the others have always asked follow up questions and tried to improve it.

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  • cowgal
    cowgal Member Posts: 833
    edited January 2022

    The pee odor issue has been discussed several times before. It is normal for Faslodex users to have odiferous pee. I posted back on December 24 what the ingredients in the shots are and it definitely will make sense to you why it smells like it does. I don't really notice BO from it but maybe if you are sweating it comes through.

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited January 2022

    I am waking up in the morning sometimes with the back of my hair wet from night sweats. This is when I'm noticing my stinky issue. I'm sure it's related somehow.


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  • Checka
    Checka Member Posts: 21
    edited January 2022

    Hello, team fanny pack? lol. I am new here. I was diagnosed with MBC March 2020 and earlier this month learned of 3 new mets, so I'm off Anastrozole and beginning Faslodex and Ibrance. Still adjusting to the latest info and emotions.

    I had my first shots of Faslodex 1/12, the next is this coming week 1/26. I've been reading some posts to learn from all of your experience and stories. I have had a large numb area on my outer upper thigh since the day after my shots. As the sensation returns, it feels sore. I'm also experiencing soreness in the hips and sacral muscles. Not pain, but soreness like I worked out. The nurse did inject me in the upper hip area (ventrogluteal?) as opposed to the buttocks (dorsogluteal?) so hopefully I can avoid any real pain. After reading posts, I think this is par for the course but I worry it will get worse as I get more injections. I guess I don't have a question, just wanted to introduce myself.

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  • cowgal
    cowgal Member Posts: 833
    edited January 2022

    Welcome Checka! Hopefully, your new drug combination will knock out your mets!

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  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited January 2022

    Hello! Somebody suggested standing pigeon toed for the shots and that seems to be working for me so far! Welcome, but sorry you've had to join us.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2022

    Hi, Cheka!

    There are many good tips re: Fsalodex at the beginning of this thread--'way, 'way back. Check them out.

    Welcome to the Pack!

    Tina (aka Veteran Pincushion)


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  • Checka
    Checka Member Posts: 21
    edited January 2022

    Thank you, glad to have a place to connect with women in the same boat on the same journey.

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  • BeatingBC
    BeatingBC Member Posts: 24
    edited January 2022

    Fasoldex with ibrance proved to not help. I am looking for alternatives. Pharmabad mentioned rso, has anyone tried this or have seen any documental research and or testimonials? I have seen that frankincense= thyme or lemongrass has shown to kills the cancer cells, but still needs more research on humans.

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  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited January 2022

    That sounds like a scam. But you'll want to ask about it in the Alternative Medicine forum. This post is for Faslodex.

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  • BeatingBC
    BeatingBC Member Posts: 24
    edited January 2022

    Right, and fasoldex did not help. Nor did the ibrance with it, so this IS the right forum. Thank you for you attention to detail.

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  • BeatingBC
    BeatingBC Member Posts: 24
    edited January 2022

    Furthermore, why would you be so negative about people trying to try alternatives? It is just not good karma. You should be positive and supportive and not state that something is a scam, unless you have FULLY researched it and have watched the thousands of videos, not just rso but for other people whom suggest the budwig diet or keto diet or whatever. We all here to HELP, not to be negative. Get a grip. If your family member was dx with cancer, wouldn't you want to find a cure? Your negativity is not helping you or anyone else. Please be supportive.

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  • BeatingBC
    BeatingBC Member Posts: 24
    edited January 2022

    When I was taking fasoldex, the instructions clearly state that the liquid should be at room temperature and that they should be injected extremely slow, at least a minute and a half on both rear cheeks/buttocks and no where near the sciatic nerves. In the past in was administered too fast and later that day, I fell to the ground and had welts for weeks. Not just on one occasion if you do not have the same nurse injecting you. Take heed. I have given up on pharmaceuticals as they made me more ill and the cancer returned FROM the chemo and rads.

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  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited January 2022

    My family member? Multiple family members have died from, have, or had cancer, including one with Stage 4 colon cancer, and my mother and aunt both had breast cancer. And how about ME? I have Stage 4 terminal cancer. Everyone in this forum has terminal cancer. Obviously we all want a cure.

    Edit: the post I was responding to appears to have been removed by admins.

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  • wrenn
    wrenn Member Posts: 2,707
    edited January 2022

    BeatingBC telling someone to "get a grip" while claiming to be supportive is ironic. I agree with other posters that your claims (unsupported by science) belong in the alternative treatment forum.


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  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited January 2022

    I looked at her post history and it appears to be a spam account. It's posting the same thing on multiple forums. One of my Facebook groups recently got spam-attacked by an RSO account too.
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  • BeatingBC
    BeatingBC Member Posts: 24
    edited January 2022

    By no means is my account a spam account and I am appalled that you would state this. I am just hear trying to get help and provide help. I am an elder woman and not on social networks. Wow, incredible. Only here to help and get help. Your options are just that. God Bless.

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  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited January 2022

    Anyway.... welcome Checka! I haven't noticed my reaction to the Faslodex shots getting worse each time. But I've only had four so far, so we'll see how it goes. It's mostly been sore for a few days but nothing painful. Like you said, similar to being sore after a hard workout!

    The confusing part is knowing what side effects it could be causing. I'm also taking Piqray, Zolodex, and Zometa so who knows what's causing what? Each time I experience a new and exciting side effect I have to read four different lists to figure out where it might be coming from. Ha.

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  • gailmary
    gailmary Member Posts: 332
    edited January 2022

    oh yes, Parakeets Rule. It can be confusing juggling drugs and trying to determine which is causing which side effect. It doesn't help when doctors suggest you can't be sure unless you prove it by going off a while and back on to see if you have the same results. That's not always the point of course. Yet it might be if we need to consider discontnuing a drug. Usually I have to debate what to take or how much to treat the side effects.

    Faslodex has been very easy for me. I had my first PET in 4.5 yrs when I started it so Monday we'll see if it's still good. I'm most anxious to know what he'll switch me to if there's progression. I needed to stop the xgeva and stopped ibrance after first year. At one time he said he could add it back. Would that be enough? Wishful thinking here.

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  • BevJen
    BevJen Member Posts: 2,523
    edited January 2022

    Gailmary,

    I am about to go back on faslodex, along with neratinib. I agree that faslodex was a relatively easy drug for me. Hoping that your scan shows it's still working for you. Good luck.

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  • gailmary
    gailmary Member Posts: 332
    edited February 2022

    it's still working! Almost 5 yrs. Pet scan was clear for new cancer and report states: "Stable sclerotic left humeral lesion without focal uptake".

    Of course that doesn't explain the pain in my arm. Arthritis or cancer or trapped nerve or? Oncologist says to see sports medicine guy about cortisone shot if I want.

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