Faslodex Girls Thread
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Oh we don't forget the cats - there is a corresponding Chewy.com order and their favorite silvervine, catnip blends, treats (Greenies! I wish we had them in the UK) and wet food (two boxes usually). They don't know how good they've got it!
Man, I have got some swollen feet going on the last week or ten days and its starting to get annoying. I dont know if accupuncture brought this on or what but its starting to really bug me to have feet that look like my late great aunt's. Hubs loves to help out with a foot bath,but it can be such a pain to get everything out. I may just have to suck it up and order one of those things off Amazon.
I really hope its side effects that will level out in 4- 6 months, I feel like I ran a marathon every day with this level of muscle pain. Hoping adding Kisqali wont fundamentally make things far worse!
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I dread the shots too. I can’t stay awake. I sleep 20 hours a day. Get up to check the critters and go back to bed. I can’t eat dinner might be an ensure and applesauce. Cardio was barking at me today you lost 12 pounds I can’t eat but the shots are working. I got some lab results back today. The true cap has dropped my tumor markers and I assume with the falosadex they dropped 100 points in six weeks. My skin is a mess. I look like a blizzard. I’m peeling all over from the rash, but I’m gonna try to continue with all of this and not throw in the towel because the numbers are dropping.
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Have I forgotten just how crappy a person can feel the day after getting these shots? I have no energy whatsoever, but I'd like to go for a walk, and I'm aching a lot - especially head,back and chest. Has anyone else had low or lower blood pressure after getting these shots? This morning my blood pressure has been hovering in the high 90's over the low 60's. I get worried when that happens. Once I called the PCP when I got a reading of 95/58 or something and he said, "So?" He told me it was really no big deal and not to worry about it, and that it wasn't uncommon. It's up to 104-66 now, so I'm feeling better, but just wondering if anyone knows if this is a fulvestrant thing. I don't normally have high blood pressure, but it usually isn't this low either. I don't take any blood pressure drugs. I'd be interested in hearing about anyone's blood pressure experiences with fulvestrant. Thanks.
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Good Morning Ladies (& Gents?)…… I got my three injections yesterday. Xgeva in the arm, and Fasoldex on each sides of the “Tush” as my Oncologist calls it😉…..very. Itchy today over the lumps that Fasoldex injection leaves. On my butt cheeks. I’l; have to use the Bactene spray, it’s the only thing that stops the. Itch. This weather is making me feel very bone achy too. I asked my Onc if he. Thought I’m NEAD because my Scans are always stable. He said “no you have stable scans but I won’t. Say NEAD”……
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Shanagirl - My onc told me that with bone mets you can never be NEAD because the "scars" from the lesions will always show on a scan. "Stable" is what means good when you have bone mets.
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My Onc told me NEAD is no Active cancer.
STABLE is obvious lesions the meds have under control.
I usually get bone scans and ct's.2 yrs ago I had a PET. It said :
" No evidence for FDG avid osseous metastatic disease. Previously
demonstrated FDG avid left humeral lesion in 2017 is not FDG avid.
Sclerosis in this region, similar to multiple previous CTs"
Isn't this No Evidence of Active Disease?. Doc says I guarantee a biopsy would show viable bad cells. Can't win. I don't expect to hear that I'm cured. I think he doesn't want us to jump to the wrong conclusions. He also said if I stopped meds that someday it would comeback like a wildfire. No thank you. He doesn't use the word "remission" either. It's just sleeping. A simple word to understand.
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I’m starting Faslodex tomorrow. Wish me luck!
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Good, good luck, AJ!
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thanks @threetree ! Got the shots this morning and had a wonderful nurse. It hardly hurts at all! I’ll be able to keep seeing her. She kept reassuring me. I feel so much better about it now
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Oh AJ, so glad to hear that it went well and you can stay with the same nurse. I have to take pot luck when it comes to the nurses, but thank goodness they've all been pretty skilled and accommodating so far; some more than others, but none have been outright bad. I'm almost a year into this and and while it's no picnic, it is "doable", so you should be relatively OK with the side effects. Here's to a good long experience with this for you. ( I've seen where some here are getting 7+ years. I realize it's rare, but obviously possible for some.)
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Ugh, I got this on Friday along with my Xgeva and Ive been wiped out all weekend sleeping. Now, lot of other things contributing to that, but my god, I need to not be comatose! At least I got my favorite nurse for this, she knows exactly where to locate the shot, pinch the skin, 'sharp scratch' and slow push. The one I got two times ago was terrible and shot it right into the middle of the muscle and was a bit too close to the sciatic nerve!
Anyway, I guess a bit more rest for me today is needed, but Im hoping over the months I won't need as much 'time off' after injections!
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It seems to level out for me after about 5-7 days, @shanagirl, and Ive noticed with every injection the recovery is a bit faster. I was definitely more awake on Sunday than Saturday (and I was fighting off an infection too) and have been more or less normal since Tuesday in terms of sleeping and the like. And the mental funk is always hard too, but I always chalk it up to the drugs talking, not me, and that we are in the sub zero basement of menopause dealing with a lot of stuff so hey, we can have our funks :)
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@sondraf yes I do seem to bounce back within 2 weeks of the shots. I’n notice that If I spend a day being more active and going out, I am totally exhausted and bone pain. Yesterday I was out all day for and appointment with DH. His appointment lasted all day. I did nothing but wait in the lobby on a comfy couch reading my iPad all Day but by the time we got home I was so wiped out and this morning I could just close my eyes and fall asleep 😴🩵
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I seem to have handled the shots just fine. I always have fatigue in the afternoons but couldn’t tell what drug or emotional state causes it
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Has anybody else gotten really bad shoulder joint pains while on this? Lately, I've developed some real strong bilateral shoulder pain. Onc's office doesn't seem to be super concerned but just wants me to let them know if it continues, gets worse, etc. I also have spinal fractures that have caused me to permanently lean forward and be round shouldered and I also use my phone a lot, so look down and get "tech neck" sort of symptoms and I think this adds to it, but I can't help but think the Faslodex is the prime culprit here. Got my most recent shots yesterday, but this shoulder and upper back/neck problem has been ongoing and increasing over the last month.
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Threetree and all , I am so sorry to read of the pain and aches that many of you are experiencing . I've been on faslodex for 4 years and 5 months and have not had any pain or significant side effects . I had sciatic pain once (in 2019) from a shot that hit a nerve but it didn't last more than a week .
I wonder if faslodex plus a bone strengthening med creates the pain and issues ? I am only on Ibrance and faslodex . I do take Celebrex for joint paint but its joint pain in my hands and while it doesn't get worse with the faslodex injection I know the hormone meds cause it (I had it with femara as well). Plus, I've read on here that Celebrex has some other benefits to fight breast cancer besides relieving joint pain. I may have slight fatigue the first couple of days but nothing that keeps me from activities or work.
Theeetree, I hope your shoulder pain resolves and doesn't get worse .
Edited to add: I started Celebrex 1/2023 but didn't have any side effects from faslodex in the prior years. Celebrex helps my "arthritic fingers" .0 -
Aprilgirl1 - Thanks for your sympathies for those of us who struggle with Faslodex side effects. On the other hand, I want to say how very happy I am for you, that you've had your 4 and a half years with little trouble. That is inspiring and offers hope to some for sure. I'm also on Zometa and have wondered too if that was some of the reason for the pain. I haven't seen or heard from anywhere or anyone that this bone strengthening drug causes any ongoing sorts of side effects like that. All I hear about is the immediate side effects that occur within the first few days of an infusion, and then the long term possibilities of osteonecrosis, etc. I often wonder if there aren't ongoing side effects, even after the acute period following the infusion. I think my aches and pains got noticeably worse after adding the Zometa last fall. I'd started the Faslodex the previous April (about a year ago now).
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Hey, Faslodex girls and boys - just how bad do your body aches and pains get with this drug? How debilitating can it get for you? I'd just like to hear other people's experiences so that I have something with which to compare my own.
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I had my second shot on Friday. My left butt cheek and whole hip are sore. Stupidly tired too although it’s hard to tell which treatment is responsible for that
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Threetree.
I've had little discomfort from faslodex 7 years! The few aches I have are fleeting.
Aches I have are minor arthritis. I'm 67. Even if it's from arthritis it's not bad. I do declare though the antidepressant does a good job controlling my aches. So maybe you shouldn't go by what I say.
I wish you all pain no worse than mine.
I'd have to say I'm more tired and lazy than without faslodex.
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I usually have three or four days of aches and pain from Faslodex starting the day after the shots. I just plan on staying home although it helps to keep moving. I find that keeping active on shot days minimizes any localized pain. We usually stop for lunch after and maybe some grocery shopping. I am starting year three of Faslodex although I have been on Zometa eight years now.
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AJ - Glad you're doing generally OK with the Faslodex so far. Sorry about the rear end pain on that one side - nasty! So far (just about a year now) I've been lucky to have had pretty OK shots with no real aftermath from that. I have a friend who drives me, and she warms up the vials while I talk to the palliative care nurse for awhile, and then the regular nurse comes in and does the shots. We play music (60's Motown), talk, etc to lower the stress, I take the weight off the foot of the side being injected, and I always, always remind them to go very slowly and they usually do. I think that has been part of the reason I've had no real troubles with the shots themselves, except for minor bruising. It's the drug side effects that mess me up big time. Faslodex can make you more tired than you might think too - especially if you also do Verzenio. It's easy to put all the tiredness onto the Verzenio, but they both do it.
Gailmary - I am so glad that you're on such a good run with Faslodex and have so few troubles with it. It gives me (and hopefully others) a lot of hope!
Intolight - I used to also have a few bad days right after the shots, but more and more it seems like those "few days" are turning into more like two weeks. It was a week yesterday since I had my last set of shots, and I have been miserable with all over aches, pains, body tingles, low mood, and bad fatigue ever since then. For the first time too, I got real bad sore and stiff legs while out on my walk (usually only happens when standing and sitting) and also was overcome with fatigue, so didn't go for my walk yesterday and won't today. My legs are still real stiff and sore just from standing or sitting for any period of time beyond a couple of minutes. Still super tired too. A weather change today from sunny and warm to rainy and cooler isn't helping either. I too find that going out to lunch and/or grocery shopping - or even taking a good long walk, after getting the shots can really help with that first day reaction. It sure kicks in on successive days though. Glad to see you've been doing the Faslodex for a good two years at least, and I'm really impressed with your 8 years of Zometa. I declined it in the past, but agreed to start this last fall. I'm due for my 3rd infusion early next month and not looking forward to it. The first two were absolutely no fun whatsoever. I'll try to think about your successful 8 years when they hit me up next month (smile).
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@threetree , sounds like you have a party when you get your shots!! Mine are boring. The butt pain is getting better.
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AJ, Glad to hear you're getting better. Yes, it is just about a party when I get my shots. It really varies though depending on who's there, and if we're able to get music on, etc. but something like party is the goal.
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Ive been on it since 2014. Im to the point where I hate the injections. I have lumps from 3-4 months ago and they hurt but I like living so I keep getting them!
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Have any of you had the D after getting Faslodex injections? I had my shots yesterday and then came home and made lunch (some deli food) and then wound up with a big D problem in the afternoon. Not sure if it was the Faslodex or the deli food. This has never happened before. Nausea/vomiting, constipation/diarrhea are all listed as potential side effects of Faslodex shots, but after a year of getting them I've never had any of those problems; just all the muslce, joint, bone aches, and fatigue. I also can't recall ever hearing from anyone on this forum who had a D problem after getting Faslodes shots, so I'm wondering just how common it might be. I remember when I was about to start the shots, I read about the side effects and freaked out because there are so many, and I didn't want to be sick in my friend's car, as she was going to drive me to and from. Thank goodness nothing bad ever happened in her car, and again, I've never had or heard of anyone getting the D from the shots, but since they are a noted possible side effect, I'd like to hear about other experiences if they're out there. Thanks!
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@threetree I had yesterday my very first Faslodex shots. I had liver progression after 8 months of Xeloda.
I had crazy D in the afternoon! I can't tell if it is that, as is my first experience, but it was for sure my first though...i didn't eat nothing different, and I didn't have it before the shot. So I think must be Faslodex. No nausea though.
Other than that I just had a crazy pain during the shots, and pain in the afternoon to my legs...but I went for a run and went almost away. Today my legs feel little weird but nothing too bad, and I'm little tired but nothing too heavy. I hope this medicine will last longer than the others, in two years I already went to three line of therapy (ribociclib+letrozole, Capecitabine, and now Faslodex), I'm so scared! Anybody progressed fast on other medicines and than last a while on Faslodex?
I'm 90% ER, so hopefully will work...somebody know how succesful it is? Does it work on liver?
I read many of the old posts here, and it seem most of the SE are tiredness and joint pain...anything else?
Does it cause hair to fall?
Sorry for all the questions, but my MO didn't really told me anything (other than avoiding grapefruit), they are always so in a hurry! I don't like that.
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@amel_83 I have D but it is because I also take Verzenio which is notoriously known for that. I have little change after my Faslodex shots. My hair has thinned and changed, but not fallen out. Are you taking anything along with the Faslodex? Usually there is a combo, but I know it can work alone.
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No, just Faslodex alone...as I have no other mutations, and they didn't want to add a cdk4/6i for some reason...
I hope it will work alone so
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