Faslodex Girls Thread

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Comments

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    I think you will be fine to drive as long as your shots are uneventful (don’t hit a nerve, no allergic reaction). You might want to walk a bit to circulate the drug, then stick a cold pack to reduce any pain, behind each hip while you drive.

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Hi Grace,

    I agree with Shetland. You should be fine. Warm the injections (I usually stick them under my arms or between my thighs for a couple minutes) and make sure they inject slowly. As Shetland suggested, you probably want to walk around for 5-10 minutes after and, given that it is such a long drive, I would stop every now and then go get up off you butt. Oh, and make sure they use bandaids given the long period sitting. My injections often seep a bit.

    Worst case you will be a bit sore but really, driving or being a passenger is much the same. I’ve never had any issues like nausea or dizziness. Just varying degrees of tenderness and the stinky pee which I’m sure is from the castor oil suspension

  • graceb1
    graceb1 Member Posts: 56

    Thanks for the replies. I'm on my way up this morning.

  • baywitch
    baywitch Member Posts: 63

    Sadiesservant … so glad someone else has mentioned "stinky pee". I have been getting Faslodex shots for many months now, but just noticed the odor after the last couple shots that lasts a few days. Thought there was something wrong. Thanks for the info Other than that, no SEs or pain after the shots.

    kathy

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Hi Kathy. I can’t claim to be the first to discuss that particular side effect but know that it’s a bit of a surprise to those who are new to the treatment.

  • tina2
    tina2 Member Posts: 758

    Hello, Fanny Pack. I'm back! (See "Well, damn" thread for details.)

    Tina


  • JACK5IE
    JACK5IE Member Posts: 654

    Stinky pee here too for a couple of days after the injections.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    And along with that chemical smell, a feeling like a urinary tract infection coming on, but it is just irritation. I have now finished the three loading doses and am glad the shots will be a month apart now.

    SUMMIT Trial: Neratinib, Herceptin, Faslodex

  • Grannax2
    Grannax2 Member Posts: 2,387

    How many, if any are on Faslodex alone? I've noticed more hair loss on it than several other real chemos. Anyone else? Also weight gain. Just wondering.💞

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Hi Grannax.

    I was on Faslodex alone for almost two years only recently adding verzenio. Did not have hair thinning but have noticed a bit since I added Verzenio. Weight gain? Most definitely. Thankfully mot too much at this point as I had lost quite a bit after my original diagnosis due to the effusion and then pneumonia. Back to where I started but the weight all seems to have come back around my middle! Grrr!

  • tina2
    tina2 Member Posts: 758

    Grannax,

    I was on Faslodex only for many years. I gained a lot of weight around my midsection , but can attribute some of it to lack of real exercise because of arthritis. I had no appreciable hair loss.

    Tina


  • Grannax2
    Grannax2 Member Posts: 2,387

    Thanks girls. Mine is around the middle too. Grrr

  • gailmary
    gailmary Member Posts: 526

    I'm on faslodex and xgeva quarterly now.

    1st yr faslodex, ibrance, femara and xgeva

    2nd yr dropped ibrance.

    3rd yr dropped femara that was late last spring I think.

    Said he could slways add ibrance back in If tumor markers went up.

    GAILMARY

  • gailmary
    gailmary Member Posts: 526

    My faslodex injection for friday has been cancelled cause of the coronavirus. I'm pretty stable and there is nothing I can do about it anyway. I think things will be worse in another month and will be a greater need to cancel then. Who am I to say?

    Anybody else?

  • BevJen
    BevJen Member Posts: 2,341

    I am scheduled for my faslodex shot next Tuesday, as well as a blood pull. Those are still both a go, but I asked to delay a nuclear bone scan, and they said it was a good idea to delay.

    Are you located in an area of lots of cases of coronavirus?

  • gailmary
    gailmary Member Posts: 526

    I'm about an hour between several known cases. Not too worried since I'm taking only faslodex and xgeva and 63. But playing it safe. Not expecting cabin fever either. Its spring and I get outside alot.

  • lulubee
    lulubee Member Posts: 903

    I have a bone scan and a CT scheduled for Friday that I really need to have done asap because it appears my treatment may be failing. All I can do is keep distance and wash my hands a lot. And pray.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Wow, gailmary, I don’t like to hear of a stage iv patient not getting treatment. But maybe since you are stable they judge it more risky for you to come in.

    Lulubee, I hope your treatment is not failing! Do keep distance.

    I plan on leaving any crowded waiting areas and telling the staff to call my cell phone when they are ready for me. Hopefully they have already devised a way to keep distance in waiting areas. At my cancer center the waiting area for VAD is always crowded. I am going to call a couple days before and ask if they have arranged things better. I think they should draw my blood in the private infusion room rather than send me to VAD first. The private room is because research subjects are treated in a special facility. I wonder if being on a trial will make me less likely to have things cancelled.

    SUMMIT trial: Neratinib, Faslodex, Herceptin

  • sadiesservant
    sadiesservant Member Posts: 1,875

    I’m also surprised they canceled your injections Gailmary. Here you have to have them done by a doctor or facility other than the cancer Agency. My GP’s office phoned me today to advise that they were cancelling all non-essential appointments but obviously I needed my injections. They wanted to make sure I was okay being alone in the office (uh, yeah, completely!) and I’m the first appointment of the day. Talk about being special!

    I did suggest that I could stand on my porch and they could use a dart gun. Happy

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    You’re hilarious, Sadiesservant.

  • tina2
    tina2 Member Posts: 758

    Sadie,

    Bottoms out and up!

    Tina

  • spicedlife
    spicedlife Member Posts: 79

    Y'all...I think my onc gave me the last faslodex and maybe the one prior that have resulted in excruciating pain. I got a bone scan because I was sure the cancer was back but it was clear. I think he hit a nerve. Have any of you ever dealt with anything like this? Thanks in advance for anything you can tell me. I'm taking 20 mg vicodin, muscle relaxer and I got a steroid shot with a pain reliever yesterday....the pain was much better for a few hours but it's come back. I was walking a minimum of 5 miles a day but I've been completely shut down for a few weeks now.

    I had to stop physical therapy because of the pain. If I can't get this resolved then I will stop the Faslodex. I'm going to ask my nurse to give me both injections on my next treatment day. He can't come near my butt!

  • tina2
    tina2 Member Posts: 758

    Giving those injections requires skill. Get a nurse experienced with intramuscular injections.

    https://www.oncologynurseadvisor.com/home/hot-topi...

  • Grannax2
    Grannax2 Member Posts: 2,387

    I have excellent news to report. I finally had my PET, after six months of being on Faslodex only, and it's working! My lung and chest mets responded better than any other TX I've been on. YAY. It's been my easiest TX so I am thrilled and a little shocked. The uptake was much less in all the tumors.

    The y90s worked so well the report says " liver mets have "resolved". Can you believe it? This was my second set of y90s, the first was in 2017. I got 18 months from that one.

    So, with the combination of Faslodex and y90s I hope to get at least that much or more.💞

  • JACK5IE
    JACK5IE Member Posts: 654

    Wonderful news Grannax2!

  • tina2
    tina2 Member Posts: 758

    You go, Grannax! Happy for you.

    Tina

  • laureninphx
    laureninphx Member Posts: 138

    woohoo!!

  • lulubee
    lulubee Member Posts: 903

    GrannaX, I am thrilled to hear your news! Best news all day. Maybe week.

  • gailmary
    gailmary Member Posts: 526

    YaY Grannax. You know that gives us hope. And even less fearful if we ever need Y90.

    GAILMARY

  • nopink2019
    nopink2019 Member Posts: 384

    Where do you get your shots? stomach or butt? I've had shots for 5 months, always both @same time in butt. (Wonderful idea, they inject at same time. push together slowly, then remove together. Takes away anticipation.) Not terrible, but how is it in stomach?