Faslodex Girls Thread 2014

I have had 4 sessions of falsodex along with xgevia. I have found I have joint pain all over the next day. Then I’ll have another episode out of the blue two weeks later! I my joints and even my skull is tender. Does this happen to others, they say this is a side effect but are these episodes through the month normal? They last 24 hours or more then disappear completely. I’m not looking for my next injection (btw I’ve had no injection site problems)

Thanks for input I feel crazy alone

Hi Pamela,

You are not crazy. I have been on Faslodex for a year and a half and have found the aches and pains have shifted and progressed. At first I was pretty achy for two days after my injections. Now I find that I also have a few days when I am super achy (i.e. everything hurts - ankles, legs, arms, elbows, wrists, you name it) about mid-cycle. Add to that the bisphosphonate (I have this as my bone strengthener) which also knocks the crap out of me in terms of joint pain and there are several days a month which make me fee like I’m 90 instead of mid 50’s! Eek.

But, good news is it’s keeping me stable and I’ll take achy over nausea, vomiting and fevers!

Hang in there. It’s a full time job trying to figure out the side effects!

Pat

Prompted by Goodbye Girl's recent "Generic Faslodex" post, I just did a little sleuthing and found that a generic fulvestrant injection from Sandoz came on the market at the end of May. It's FDA-approved. It would be interesting to see how many of us will be switched to it.

Tina

thanks for letting me know! I’m sorry you’ve had problems too. I feel better knowing it’s not in my head and it will help me figure out a way to handle the pain.

Tina2, I just got offered the generic fulvestrant for the first time yesterday! I was looking for feedback online about whether people noticed any differences between faslodex and the generic and saw that it had just been approved by the FDA in May-- so I couldn't turn anything up yet. I'm actually having an easier time with my injections this round-- less painful during the injections and less site pain following the doses (this was my 6th round). But that could be a fluke. I'd love to hear other people's experience.

Does anyone have a cough as a side effect from Faslodex? I just had a scan two weeks ago and my lungs are clear but I'm dealing with this cough, it comes and goes. I wondering if anyone else had some sort of cough from Faslodex.

Thank you for mentioning the aching after injections because I suffer from ache legs 2-3 day after injections and extreme fatigue the day of injections.

YESSSSSS you described it perfectly!!

Fazlodex is one possibility for me after X just failed. I'm waiting for my MO to let me know what my options are.

I have ESR1 so AI's are out. Does it always have to be given with another TX . IL and AA failed too.

Hi ladies ... question for all of you. I will be receiving my 3rd injection tomorrow and have been reading all your comments and suggestions. I have had no SEs or complications thus far, but am curious about relaxing the legs when getting shot, lol. I always have two nurses administer my shots simultaneously. Is this unusual? Do most of you get one shot at a time?

Thanks for any info.

Kathy

Baywitch,

That is unusual. Are you standing or lying down? Most of us get one injected one cheek after the other.

Tina

Kathy,

Hey, whatever works! Happy you have no SEs!

Tina

Hi Fanny pack,

I need to reach out to folks to see if any of you have had a reaction to the injection after months with no issues. I’ve been on Faslodex since January of last year and have found it very tolerable. The injection site has typically been a bit sore for a couple of days but that’s not a big deal.

Well, had my injections on Tuesday AM and things were a bit different. First, my GP was surprised that the injection sites kept bleeding. They have always wept a wee bit after the injection but this time they did not want to stop oozing. He put bandaids on and, 24 hours later, when I took them off it was clear that both sites bled more than normal. The left injection site was still bleeding. What? Now today I the left injection site feels a bit odd, burning a bit and still quite sore. When I looked, there is about a 3 inch ring around the injection site that is discoloured. Oddly, the other side is fine with the exception of the red spot where he injected.

Have any of you experienced this? I will flip a note to my MO tomorrow (I’m scheduled to see him on the 26th) but am worried that this is the beginning of an allergic reaction. Would be seriously bummed (please excuse the pun) if I had to abandon this treatment as we are just in the process of getting approval to possibly add Verzenio to the mix.

Pat

Sadiesservant,

I was on Faslodex for seven years straight. (I am now on hiatus.) During those seven years I experienced a variety of injection site reactions. Here's my two cents: The bleeding you describe may be caused by any NSAID you might be taking, including aspirin and many arthritis meds. The soreness and large ring around the injection site could be from an over-enthusiastic injector pushing too hard, too fast. Seriously. The shots are quite difficult to administer and the process can be rough on the administrator. I have been visibly injured this way. In fact, I still have a weird patch on one buttock--and it's been almost a year since my last injection!

My advice: Tell the administrator to warm the shots and give them slowly. If he/she complains that it "hurts her hand," as mine did more than once, tell him/her to be a professional and deal with it!

I'm starting Faslodex next week after Letrozole and Ibrance failed and my scan showed progression in two of my bone mets. Doing radiation on those now. I'm a little freaked out at the thought of starting a new medication and praying that it works for a good while. I was so lucky to get 3 and a half years with the letrozole; can't help wondering if that was just dumb luck. I hate having to take any pain medication or anxiety meds because it affects my ability to mother my kids. I know I'm probably going to need them more once I start this new shot.

Any tips, advice and hope for handling this would be greatly appreciated.

Hi Kristin. Chiming in to agree with Bev-Jen. I had a horrible experience with Arimidex, so refused AI's on Stage IV. Faslodex has been very tolerable. I have had no issues with the shots, including not needing ice packs, following all the advice from the ladies here--standing as Bev-Jen described, insuring the vials are warm (under my armpits) and slow injections. My only adjustment was to the hot flashes and subsequent fluid shifts which left me light-headed. I have salted peanuts to help with that and carry fans around.

Wishing you the best!