Hi all, I’m at the Susan Komen Conference In NY this weekend. I had a long talk with a doctor who specializes in bone Mets and he told me that he thinks that Faslodex might work for me and not make me as miserable as past treatments have done.
I’m seriously considering it but need your opinions. Can you tell me about your experience with Faslodex before I talk to my oncologist? I’ve been off treatment by choice for almost six months and if I talk to her about it before getting the facts from you guys she’ll likely be so thrilled that she’ll schedule me for tomorrow.
Thanks for your anticipated answers.
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Lisa11171
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So glad you are considering it. Faslodex is a targeted receptor therapy given in buttocks only. You get one set of two then two weeks another set then two weeks another. Then it is monthly. I was on only that for a year.
It is thick and oily and has to be given slow-1-3 minutes. More warmed up it is better for tolerance. Afterwards walking helps and then warmth. I used to come home and sit on heating pad-it helped.
I know there are many tips on the forum. For me I tense up no matter what- I used to take 15ml Benadryl
Before liquid pediatric. When it was time I would lean over a chair placing my arms at top with head down because I wanted both shots at same time. Any other way I stood hurt more....just me.
After that piece of cake♥️♥️♥️♥️💪💪💪
Hi Lisa,
I have not personally been treated with faslodex, as I am still on my first line of treatment, but I was told by my oncologist when I pushed her that faslodex would likely be added as my second line of treatment. So what I would say is that I would give it a go.
You have sought a medical opinion at the conference and were told it could work for you, which sounds really promising. I know you have been off treatment for quite a while now, but if this treatment can halt the progression of your disease and give you a good quality of life, then I think it will be well worth it. Just think of what that could mean for you! Please let us know what you decide to do.
Francesca’s experience and tips give a great overview of the treatment. I’ve been on it a year. Each scan gets better. Fingers crossed. Hate the shots, live the results and the only side effect I notice is a metallic taste and a metallic smell to my irons for a few days. Not overwhelming, but noticeable. Good luck
OMG, maybe problem solved? I just arrived in Raleigh area, staying with a friend while I do scans/visit w/ my sis's doc at Duke, and, when she was offering me wine, I said that, sadly, I had given up prosecco (my FAVE, light/sparkly/cheap!) because it tasted METALLIC. Maybe that experience was temporary, post injection? Perhaps I'll try some tomorrow...as an experiment. Tough job, but someone has to do it!
Hi Lisa. I’m on Faslodex for 20 cycles now (17 months I think) and I wish I could continue on this medication for a long, long time. It’s true that having the butt injections monthly is an inconvenience, but for me, there are hardly any side effects. After the injections, I feel a few body aches and pains which lasts for about 2 days but after that, everything is fine. I am on a Ibrance as well. I would definitely say go for it.
Hi Lisa. I started faslodex only as my third line of treatment last week. I must admit that I have had no side effects so far ( my first LoT Ibrance/ Letrozole made me very poorly for first few days and my 2nd Afinitor/ Exemastane made me very poorly throughout the 3 cycles ) ... I get the feeling that the injection is the worst bit so if you get a decent/ experienced nurse you are half way there! All of my treatment have a handful of fortnightly hospital visits and then constant 4 weekly so I am used to that now and does not see it as a negative... All the best. Take care
I was on Faslodex for the past year, with Ibrance and Xgeva, and found it absolutely fine! Go for it, for me it's not been hard at all and so much better than staying untreated!
I have been on Faslodex/IBrance/Xgeva for 6 months. Showing reduction in bone met tumor. I am needle phobic so I put lidocaine cream on each butt cheek & cover it with Saran Wrap to numb the area before my appointment. I bring hot pads & I put them on my bum afterwards & before I get in the car. I never feel it or have any side effects. Thankful I have access to the best treatment! Go for it! ❤️🙏❤️
Ive been on Faslodex for nearly one year with absolutely no side effects.I'm not adverse to shots, so the whole experience has been positive for me. Here's hoping you have the same experience. Good luck.
I've been on Faslodex for 6 years now and would highly recommend it. The shots can be painful going in, but no worse than getting an IV for my none scans. Oftentimes better. Theres no rhyme or reason why one might ho in easy and the other not, but in the end they are never crippling! Go for it.
It is a once a month injection into each butt. It's a pinch. Again, because other people have different effects on the Falsodex, some need to use warm pads or whatever, does not mean you will be the same. 10 people can have the same effects with Falsodex and one has a whole different experience. I mean it is not taking pills every day. Its getting an injection once a month. I have no issues with it. Its a pinch and I'm a big girl now. They put gauze bandages on it. I am able to sit immediately and when I take the bandages off, there is no blood or anything. That is it. Its a once a month injection and better than no doing anything. I am on Verzenio now and Falsodex. With this combo, its research shows average of 16 months without progression. The study also shows if I did not take the Verzenio and only did the falsodex injections, I would have, on average, 9 months before progression so there is a difference. Point is you won't know how it is going to feel for you until you do it.
I’ve been on Faslodex almost 2 years. I don’t like shots, but I have zero side effects. I was on Ibrance along with the shots, but I couldn’t tolerate the side effects, especially the dangerously low white blood counts.
I had faslodex and ibrance for 18 cycles and absolutely loved. I tend to suffer from side effects from most drugs, I had a few to start with but by last summer I was back to my prediagnosis self. I had a month on letrazole and couldn't tolerate the side effects.
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