My oncologist switched me to Faslodex (Fuverstrant) after 2-1/2 years on Letrozole/Ibrance combo as my cancer antigen marker went up to 50.
So far some fatigue, some difficulty sleeping and occasional heat flush. What side effects have others had? I got my first injections, one in each butt cheek, this past Wednesday. Is it worse at first or are there more effects as drug accumulates in the system?
Hi Woodthrush, I am on fulvestrant and Ibrance and have not had significant side effects that I can contribute to faslodex . I do have some joint paint in my hands but I had more joint pain from femara that I took for 7 years after stage I bc. I have lost hair but I think that is from Ibrance - hard to say since I started them together . Hope you continue to do well !
I have no side effects from the combination of fulvestrant and IbranceBut I noticed that my teeth turned black and tended to fall apart. It really was not like that before the use of drugs. I wonder if anyone else feels tooth damage
Hi Woodthrush,
I'll echo what Aprilfoolz1 said about having few (if any?) side-effects from Faslodex. Like you, I had switched from Letrozole, and within weeks felt my joint pain disappear. BTW, I hadn't attributed the joint pain to Letrozole...I thought it was old age! For me, Faslo's been a much better treatment (I've been on it for...3 or 4 years?).
I'll mention that I was a tiny bit concerned when I saw your reference to changing after your tumor markers increased but then I read your post from a few months ago saying that scans showed progression. It sounds like you and your doc thought maybe you'd try to ride out current treatment a bit longer after the progression but the markers indicated that the Letrozole really had become less effective. I mention this only because I expect that other folks reading the post will be like "Oh, no! Don't change due to tumor markers!!". 
Sounds like this was not what you did...
Wishing you many great years on this wonderful drug!
Thanks LynnFish,
It is somehow so reassuring to hear of others experiences with MBC treatments. My joint pain subsided with switch to Faslodex as well, a welcome relief.
Fatigue i experience is different than Letrozole/Ibrance which was muscular dragging type. With current treatment it feels more like weakness when energy runs down. Have a 3-1/2 to 4 hour window in which i can be active then must take a preferably lay down rest.
It has been harder to sleep through the night since the switch - mind is alert, body needs sleep.
It's interesting what you say about a different type of fatigue...
It's like what they say about people who live in very snowy climates having many different terms for what most of us just call "snow"...
I experienced similar recently when I went off Ibrance for three weeks while I did radiation (they took me off treatment b/c WBC's too low and rads would push down farther). Yes, the rads made me tired, but it was a *different* type of fatigue, and I felt this *other* type of energy that I hadn't felt in years, presumably from the Ibrance. I couldn't really describe the difference to people but it was very pronounced....
Regarding your 3-4 hour window of energy...I have sort of similar. Early in treatment, I used to say "I can do/accomplish only 20% of what I used to" in a given day. I've gotten used to it, and have mostly just lowered my expectations!
Take care,
Lynn
I used to be on Letrozole alone after other treatment and knee that had failed when I eventually was diagnosed with Mets. Was on iBrance and fulvestrant for almost 3 yrs . That fatigue you describe is JUST how I used to be and I thought it was me with Mets, or the iBrance. I never attributed it to the fulvestrant so that’s an interesting thing to ponder. Now I’m on Lynparza and I think I have better staying power, although I’ve taken to describing my ability to get things done as “my days are shorter”. It’s frustrating.I spend way more time just watching tv now when the physical and mental energy tanks but not tired enough to sleep. Today I learn I’m not alone with that dilemma!
I’m just starting Flasodex too after2.5 years on examestane and Ibrance. I’ve only had 1 set of jnjections— just had soreness and some fatigue.
Hoping for the best for us!!!!
I had no discernible side effects on Faslodex. It was my wonder drug after Ibrance and i hoped to stay on it for such a long time as my tiredness decreased, my energy came back and my hair started growing again. Except, after 3 months, scans showed it wasn't working for me. Good luck with it. Hope any side effects fade away.
Rubyjade
Experience with drugs is shared yet also individual. What was the next course of treatment after Faslodex ?
I think there are a variety of options. I am now on Capecitabine (Xeloda) in a 3 week cycle - 2 weeks on and 1 week off. Unlike my experience of Faslodex, there are side effects but in general I have managed them. I had a three month scan a few weeks ago and the Capecitabine appears to be working with my bone and liver mets remaining stable.
I have been on Faslodex (fulvestrant) for 3 years. The side effects I have are soreness and itching for a few days after the injections and an occasional hot flash. I walk after the injections and use the heated seats in my car (except in the summer). This seems to help. Good luck Woodthrush.
Hi Woodthrush! I have been on Fulvestrant injections along with Ibrance for 19 months now. Side effects for me are pain at injection sites for a few days but nothing specific to Fulvestrant. My hair is very dry, thinning and breaking off ( got a short cut to even things out) which my Onc said both my meds are likely responsible for. This combination got me to remission in 15 mos. I am happy to stay this course until I have to make a switch. Best to you… Lin
Hi! Me again, I responded about the fatigue separately after Lynn’s comment but as for other side effects of the Faslodex you’ll be fine. If you get really itchy at the injection site try taking a Claritin. Weirdly it really helps. Make sure the syringes are hand warmed by nurse before the injections (makesIt runnier and less painful). And exercise you gluteal muscles soon after to get it moving through your system and help avoid those hard lumps . (Stairs, squats, walking) and/or
self-massage the areas well to disperse it. I hope it works well for you and gives you another few years in iBrance !
I have been advised by my Oncologist to begin shots of FASLODEX. This is new and scary for
me. Do the shots themselves really hurt? how long does the shot itself take? Is the buttocks
area sore for a few days after that shot? I would very much appreciate hearing from
someone who has experienced the FASLODEX shots. Dianna
Hi Dianna,
I've just had my first 2 sets of injections and I go for my third on Wednesday. I felt the same as you beforehand and it ended up not being anywhere near as bad as I expected. The first one on my right side kinda hurt/stung and the left side did not. The syringes were warmed first and my onc's nurse just gave them to me standing up in the examining room one side at a time. I wore "jeggings" so it was quick and easy. I'd say each one took about 5-10 seconds. They did not hurt afterwards but the 2nd and third nights they hurt when I rolled over in the bed. I was tired for a couple of days, which I expected, The second round was a piece of cake. The nurse gave them to me in a different place, higher up on my hip, which she does to lessen the chances of injection site problems. I was tired again but I don't think as tired as I was the first time. Now 10 days out from my second round, they started itching a little bit but nothing bothersome. Hope this helps. I know I was looking for information/experiences before I went for my first time and didn't find any so I'm glad to be able to share my experience. Good luck!
Helen
Side effects
Ibrance side effects
Started Faslodex
Zometa side effects
Low WBC on Faslodex?
