Hi I seem to be posting almost exclusively because I have been put on a new treatment and not often enough replying to others!
I have been stage 4 almost from the get-go. Had laradex for almost 3 years then Xeloda for a year and for the last 3 months Navelbine. At some point each has failed and my CEA and CA125 have risen and the liver met has grown - now some 6x2cm! Now my oncologist has decided that Faslodex may be the answer for a while. She advised against going to IV chemo (I am terrified of that!) at present as she feels my quality of life would be compromised earlier than necessary.
Anyone out there on Faslodex? How do you do on it? I would like to think it will work for a bit longer than a few months!
If you have a hormone receptor positive bc, Faslodex may work well for a long time for you. I've been on it for over nine years! I was diagnosed with mets from the get go in March, 2004, and got almost five years from Femara (letrozole). I was also on the bone drugs, first Zometa, then Xgeva, for a long time but had to stop due to my bones becoming brittle. I'll go back on sometime. I have found Faslodex to be pretty easy to be on. I have had hot flashes with hormonal treatment but take Effexor 75 mg two to three times a day to control that. I will probably never do chemo since I've gotten along so well with the hormonals. Alot of the women with mbc who I met after diagnosis were on Faslodex and doing well so I went into it with a pretty positive impression of it. I don't think that makes a difference in terms of outcome but it does make day to day living with this lousy cancer easier to have a positive sense about treatment. At least I think it has for me. Faslodex is a very thick viscous med so it challenges nurses thumbs to inject it and should be injected slowly, like over at least 2-3 minutes per injection. It helps for us to put all our weight on the hip and leg on the side opposite from where the injection is going in. It also helps if the Faslodex is allowed to warm up a a bit before being injected--it is kept refrigerated. When I got shots yesterday, I just held one in each hand while the nurse did all the paperwork and that got the stuff warmed up enough. I hope you will have the positive experience with it that I have had!
Thanks so much for the positive input and the ideas on how to cope. Fortunately I am not a needle-phobic - there is probably a proper word for that! - but hints on coping with the viscosity and cold etc are much appreciated. I felt so down after the latest scan, fed up with the roller-coaster but your positive words have helped a lot. Thanks
I started on Faslodex and Ibrance in July of 2017. Of everything I've ever been on this has been the easiest. I think it gets easier the longer you are on it.
I was on Faslodex for 11 years and had absolutely no side effects at all. I hope it works for you and there are no side effects. I had to switch because the cancer moved after those 11 years to my liver. Now I am on Ibrance and letrozole but still doing good.
Faslodex was an easy treatment for me except for the two huge intramuscular injections every month. Kind of surprised that your oncologist is not combining the Faslodex with palbociclib (Ibrance). Maybe something to ask about. Chemotherapy for me has not been as hard as I thought it would be. I have had to take breaks once in a while to let my body heal from the side effects.
Hi this is my 3rd mo. On Faslodex and it is not bad at all. The only thing is I get more intense hot flashes. When you get the shot warm up the syringe in your hands for about 15min and take your weight of your leg on the butt cheek they are using. Good luck and hugs!
I have been on faslodex and ibrance for a year so far so good. The only spot i currently have active cancer is in my hip socket and until recently it was shrinking. I was recently started diabetes meds so dr thinks maybe that why the petscan showed and increase. We'll scan again in 3 months. Best of luck to you!
Thank you all for your input. I have been feeling pretty discouraged with the Xeloda and the Navelbine failing so quickly but hope that as my liver lesion is oestrogen positive, the Faslodex (which has only now been added to the formulary appropriate to my medical management plan) will work better. Letrozole alone worked well for 3 years so fingers crossed. I am so fed up with the constant roller-coaster, good news/bad news living but I suppose that is life as we have to live it now.
I have been on faslodex since September 2016. It is 2 shots in the buttocks. Make sure they inject it slowly. It is very thick. It's a hormone injection that doesn't bother me. There are some side effects but aren't serious. Good luck with that and if there is anything I can help you with please feel free to give me a Holla
Thanks Sbaker134, you are a star. This site provides so much support. So far I am still waiting for the medical scheme to authorise the change in treatment! These wretched schemes (well named I think!) seem to think we have loads of time to wait on their pleasure. Meantime I am trying to arrange a short trip into the Kruger Park nearby and have had to put that on hold till we hear from them. Best they get back from Christmas leave and do the job they are paid for!
I understand the injection can be a little uncomfortable but have no problem with injections generally and have had little trouble with prior hormonal treatments (letrozole) I just pray this works - at least for a while. The roller coaster is becoming a bit much!
Will keep in touch and best wishes for the New Year.
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