Faslodex Girls Thread
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@sondraf I had a nurse who would inject in the middle of my butt as well. I think it’s okay. I had her every time until I moved and was on Faslodex for 28 months.
@malebreastc So glad to hear how well you’re doing. That’s great news.
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Can my situation be termed as NEAD or NED ?
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@malebreastc I would say yes.
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I dunno ladies, this treatment is really getting me down. I was out in town yesterday to see a friend for lunch/an activity and I can barely walk even with the cane and this morning was really tough. I had to call the helpline for more fast acting oxycodon because pain management failed to issue more when asked on Wednesday and I only have two doses left (helpline cant issue until tomorrow so well see how tonight goes). Trying to manage the right side hip/leg pain without NSAIDs is uh, its tough to say the least, especially as they are injecting into an area that was radiated and has heavy inflammation.
Does this get better or am I doomed to never leaving the house again until I progress off the anti-hormonals? This is day five after injection (Monday).
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Sondraf - I think side effects can last a few days to a couple of weeks. This is not a "fun" drug at all, but I guess it beats the alternatives. I'm sorry you are having such a rough time. The side effects can be very individual and fluctuate a lot, in my experience. It's been 4 days since my last injections and I'm having a terrible time with fatigue/tiredness, lightheadedness, and what seem like migraine symptoms ("hormone headache"), due to the low estrogen levels. If you aren't feeling better after the one week mark, you might want to talk to your doctor. Mine told me that unfortunately and unlike with the Verzenio and Ibrance situations, there really is no viable lower dose option with Faslodex. Give it some time, but do get things checked out if they get worse or not even somewhat better. I hope you feel better soon.
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Sondraf - Forgot to mention that I think your issue with your leg is more of an injection/ technique related side effect, rather than one that might be caused by the drug itself, like headaches, body aches, etc. I could be wrong of course, but maybe you'll get someone with better technique next time - it can help with some issues. Again, I wish you speedy improvement!
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@sondraf Im sorry you’re having these issues with Faslodex. Have you had a blood biopsy recently to see if you have the ESR1 mutation? If you did, you could try Orserdu instead. I’ve been on it five months, and I think it’s definitely working on my stomach mets. If I’ve asked this here or elsewhere already, please forgive me.
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Actually I think I figured it out and it may not be the faslodex entirely. Im tapering a short course of prednisone and I had a very tough time with muscle and bone pain coming off an even shorter course of dexamethasone back in November when I was radiated (it was preventative for swelling) and needed a longer taper. Im sure there are some aches and pains caused by the faslodex, but Im guessing the bulk of it is the prednisone withdrawl as the pain patterns fit when I take the drug and its decay over time.
I really wish not everything had come to a head with my poor right hip exactly at the same time, but here we are and I guess Ill just have to bull it through until that taper is done (another 2.5 weeks). Ive found cheap paper puzzle books a really good way to distract/soothe during my worst hours, but exercise, especially PT issued ones, is making things worse (though I try to work my arms and trunk!). I may ask to delay Xgeva a month because taking those two at the same time as the very end of the taper… just give me a damn break already. A light at the end of the tunnel, or seeing upward improvement would be really helpful at this point, as its been 9 months of pain and drug failures and more issues on top of existing issues.
@kbl I had a liquid biopsy about 9 months ago and it didnt show ESR1 mutation, just p53 and my genetic BRCA1. Oh and I think GATA3 but that was way down on the list. I cant imagine Ill get another one until this line is exhausted. I also need to call insurance this week about the second opinion service - some nice people get all my info together and ship it off to Dana Farber for their take/read.
@threetree I was reading a post somewhere last night (health unlocked or inspire maybe) about someone who only had a single injection in the buttock (so 250) after having severe side effects on the full dose. Supposedly the dosage is the same for such a wide range of weights and heights that her doctor figured she may have been getting way too much drug for what her body could handle as she was towards the low end of the weight scale. It worked for her, but dont we all wish we had a doctor with such an open mind and flexibility!
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I had the same problems with a dexamethasone taper in July 2022 after radiation of a skull bone met and couldn't wait for it to be over. Hang in there.
I also use puzzles as a distraction and wanted to pass along a free website I found: puzzle madness.uk I print out a puzzle to work on, but you can do them on the screen.
Hoping that you get relief soon.
Eleanora
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New question! I've noticed swelling of the feet and lower legs this time around, the Mayo website mentions it as a side effect to call your team about while none of the UK sites say anything. Is this common ans should I call this in? I'm on so many drugs right now including a small amount of steroid I'm not sure what end is up really.
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I’m sorry I forgot who had it but somebody here had a rash did it ever go away? What did you do for it? Who did you call? I’ve got a rash. It looks like prickly heat the babies get and it itches. I’m putting 5% lidocaine cream on it and that makes it stop itch but it’s not going away.
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@irishlove yeah Im wondering if its the steroids. I asked to swap to dex for the last week and a half as I prefer it and now Im wondering why haha. Ugh, its been forever on these things. The swelling does go down if I put my feet up on my triangle pillow, but as the Chris Rock joke goes, it looks like Im baking bread in my shoes. Lately with all the drugs and chopping/changing of treatment I get spooked so easily over side effects and just assume its something like heart or liver failure whereas before I would definitely be watch and wait with ease.
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Question
Hi all 🥰 I had my Fasoldex and Xgeva Injections las week. Does anyone else get the. Bad itching around the. Injection site on the butt cheeks over the hip? The itching up my spine and on the back of my ribs. Is intense., so weak and tired and moody also. I do get a cough also. No rash just intense itching that feels like it’s inside under my skin. I was with DH the other day food shopping and had to lean on the cart because suddenly felt very sharp hip & rib pain. The bone pain is severe after shots.. Anyone else?🤔🩵
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Yeah Ive been getting the bone and muscle pain, and I can trace it right back to the damn lump lol. Its far worse on my bad side too since there isn't much muscle to inject into. Nothing you can really do except massage it, heating pad first few days and then maybe ice pack. I did try Clarityn for the two days before, day of and two days after and am not sure if it helped. Then again what is Faslodex and what is Xgeva who knows but I also got the fatigue days 4 and 5 and general moodiness (but what is new). No itching tho!
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SHANAGIRL
I was told the itching is an allergy. I itch though not very intense. I would use tylenol, Claritin and hydrocortisone itch cream. I only occasionally use the cream.
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I was told to add PepcidAC to the Claritin, and if I needed something stronger, sub in Benadryl for the Pepcid.
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the itching, nausea and tired weakness has been relentless this week. I had asked my GP for Claritin she said I could get the generic Loratadine OTC, which is Claritin. I can’t take Claritin D due to the risk of raising blood pressure.
@sondraf I get those darn lumps from injection on my hip but this time i didn’t really get the lumps…..just the itching…….Also The butt shots are the Fasoldex ..a hormone inhibitor. The Xgeva shot in the arm is a Monoclonal Antibody
@gailmary yes twitching on the Injection lumps does seem more like an allergic reaction. What works really well for me to stop the itching i spray “Bactine” on it.
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I’ve got the rash and Boy does it itch.I’ve been using lidocaine 5% on it does a pretty good job numbing it get it on Amazon. I was blaming the TRUQAP for the itch, my daughter is an LPN. She looked it up in her drug book and falosadex can cause this. I can’t eat I’m spending most of my time maybe 20 hours a day sleeping somethings gotta give.
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Awwwww @spookiesmom yes the itching wears me out. I have’tused any creams because the “Bactene” spray work’s instantaneously …..just aim an spray😊
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Man I love Bactine spray - that smell takes me right back to childhood. I always return to the UK with two or three bottles in my suitcase.
Shanagirl - I get bone pain from the Xgeva as well, which they shoot into my stomach here. Thats been a long time issue so Im certain some of it is that.
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Sondraf - Can you order Bactine via Amazon? Assuming they don't have it in the UK.
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Hi folks. Shots yesterday and sick today. That hasn't happened in past. Nurse must have hit a vein or something because I bled like a stuck pig. All over her and down my legs. Darn that left area is sore and it's been day and half.
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Ouch! Poor baby 😔. Sounds like she hit that vein hard! Did they recommend follow up care? Do you have a huge bruise? It's hard to rest when the body part you sit on hurts.
Hope it improves quickly.
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Irish - So very sorry for you! I hope you feel better soon.
Those shots are a B and I can't stand them, even though nothing like what just happened to you has occurred for me so far. My problem is how bad I feel for quite a while after I get them - weeks. It gets worse over time. I get my next ones on Wednesday and I'm just dreading it.
As Eleanora mentioned, maybe some follow up care is in order for you, as that sounds pretty bad. Aren't you going to a new place closer to home now? Is this the first time you've gotten shots there? I really hope it clears up fast and you don't stay sore beyond today!
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Hi every one and thank you for caring. My GP has moved closer to my home, but unfortunately the Cancer center hasn't moved. They told me to ice it and she bandaged the heck out of it with that second skin tape. OUCH removing that stuff. It's slightly bruised, but not bad. Oh and I got a migraine headache on top of it within 4 hours of the treatment. Related?? I suspect so.
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Yeah Im starting to really loathe these things. I think I got sciatica from the second injection which is super fun on top of everything else. But I massage around and all I feel are these lumps here and there that are still painful when I press on them. No wonder a decent working oral SERD would be a godsend! I want to know how Tina2 did 11 years of these injections!
@irishlove that sounds like no fun indeed, an extra bonus on top of a big painful lump! :(
@threetree Before we leave for the US I make up a big Amazon (or Target or whatever) order and keep adding to it and have everything delivered to parents before we arrive, so we don't lose time chasing down groceries, etc. Bactine always makes the cut (no pun intended :)) so we always have a bottle here in the UK
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Irish -. I've been getting these shots since last May and over the last 2-3 months I've been getting migraine symptoms of all kinds, with and without actual headaches. Aura, flashing lights, pain and tingling on one side of face/head, light sensitivity, etc. Oncologist says this can be from the fulvestrant. Also saw an ENT for sinus things and he was getting migraine vibes too from what I was telling him. I've never had any of these problems before, but have been reading that low estrogen can cause it.
Sondraf - Glad you are able to stock up on stuff you can't get in the UK when you are here. Sounds like a great system you've got going with your parents. Also love the pun whether intended or not. I too have been wondering how some have been able to do these shots for such a long time. The side effects seem to get steadily worse. Maybe it levels out after awhile?
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