fulvestrant lung!!

[Ppppopp]

Hi lovely ladies.

I was wondering if anyone can tell me how they have done with Fulvestrant with a lung met? Or just in general?

I got 5 years out of ibrance (first line) treatment.

found a tiny 3mm lung met now switching to fulvestrant.

many knowledge greatly appreciated💕

[Figletf]

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.💜

[NPmary]

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).

[NPmary in reply to NPmary]

Oh - I was on Ibrance for 5 years then had progression in bone mets, I also have lung mets - stable on the fulvesrrant(faslodex) for 13 months now.

[Ph17 in reply to NPmary]

Thanks for your reply. That’s awesome!! Long may it continue💕

[Ph17 in reply to NPmary]

Thank you so much! My nurse did just what you said!

Put it under my armpits and over 2 min.

I’m just afraid the next nurse isn’t going to be as good.

What fantastic advice about a picture! I will definitely be doing that!!

[NPmary in reply to Ph17]

Discuss it with the next nurse before you get the shots. Don't worry it's your body.

[Ph17 in reply to NPmary]

Will do! Thank you so much for the amazing advice, really appreciate it!

[NPmary in reply to Ph17]

You are welcome, take care.

[Kahe in reply to NPmary]

That is fabulous advice, thank you

[NPmary in reply to Kahe]

You are welcome, take care.

[PJBinMI]

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!

[Ph17 in reply to PJBinMI]

Amazing! What a great run!

My oncologist has said the same thing. I have a 2mm spot on my lung and had a 3mm on my back which is not longer visible(5years)

Praying I get years!

Thanks for your message!

[Ph17 in reply to PJBinMI]

so true about the daily reminder!

[AuntyJane]

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.

[Corrina97]

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

[Ph17]

amazing!! Thank you so much!x