I do not have lung mets but after Verzenio I was given Fulvestrant for awhile .I had no problems other than constipation which seems to come to me from every med I have tried.Some hair thinning but not terrible.I have now been put back on infusion after small progression due to a five week break from low white blood cell count and the inability to get an Afinitor discount.
I now have started Enhertu infusion every 3 weeks.
Hoping you do well on Fulvestrant alone my onc wanted me to use it with Afinitor.💜
Most important thing to know is to ensure the shots are given correctly: 1) in the correct place so your sciatic nerve isn't struck. Google faslodex injection ste so you see where that is, talk to your nurse about it, take a picture or bring your phone and show her. She may be totally aware and competent but if she isn't aware - you will be the one with potentially disabling sciatica and even if it's not disabling it (mine) is painful, sometimes severe, recurrent, intermittent, weakens me. 2) injection come cold from the pharmacy fridge, they need to be warmed: can be left long enough in room temp to be warmed; can be put under armpits or in hand to warm up. 3) a relaxed you and relaxed hip helps: So stand, lean over counter, point toes inward, bend knees slightly, raise the leg slightly on the side your getting the shot (some people get them while lying on their belly - this has never been available to me). ALOT TO REMEMBER AT FIRST - BUT WORRTH IT! 4 ) Tell the nurse you want each shot given slowly (the med is very thick) over at least 2 minutes, tell her you can help with timing then after the shot is injected you can tell her when every 30 second has passed tilb2 minutes. Some people give it over 2 1/2 minutes. Afterwards at home, walking around for a good 30 minutes can help get the med absorbed. Heat or cold to the sites can help dis omfort at injection sites. You probably won't have problems like I did - I had problems because I get the Injections on Saturdays when staffing is different - but have now resolved problems (had to complain to doc and nursing supervisor).
I don't know if where we have mets makes a big difference but I've known quite a few women with mbc who've gotten more time from fulvestrant than they did with an initial aromatase inhibitor, like Letrozole. I got almost five years from Letrozole and then over 9 years from fulvestrant. I loved being on it! No daily pill to remind me of the cancer, lol. I hope you do well for a long time!
I have small lung mets and have been stable for the past 4 years on Fulvestrant. I am on shots #52. Initially it was combined with Ibrance however I had severe neutropenia even on the lowest dose. When COVID started, my doctor took me off Ibrance and I’ve been on Fulvestrant and Arimidex.
NpMary put everything in her post that I would recommend. On my drive home I put ice packs on each area to help with swelling. Found ice works better for me than heat. When I get home I walk, stretch, massage the area and later in the evening when I feel the hard lumps forming, I take a hot shower and let water run on it. Good luck to all of us on Fulvestrant…may we get many years out of it.
I have lung mets and been on fulvestrant over 3 years now. Find its very tolerable and not had any problems . I also take Ribociclib. Good luck .hope you do well on it too x
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