Faslodex Girls Thread

GoingToBeatThis and Brutersomom - Thank you both very much for your thoughts. They are very helpful and sure enough, broaden my perspective in a meaningful way. Many do get both together and are happy to, and don't seem to have issues. Each time I've done both together, I have much stronger side effects and can't tell which does what. I will take your advice and make sure the schedulers make separate appointments like they used to. It is real convenient to have to do it all at one appointment, as it saves time, and I feel like I have a much longer stretch between appointments, but if getting them both together is causing this, it's not worth it.

The thing about the possibility of them using a different brand is something I hadn't considered at all , but sounds very plausible. A friend comes and picks me up and accompanies me to these appointments just for some moral support and to be another pair of eyes and ears. She used to warm the vials back some months ago, because when I started getting them 2 years ago, they came out of the refrigerator. For about 6 months now though, they've kept them at room temperature, so the warming is no longer necessary. If they now have a new brand, that could throw things off for sure. I had read about many encountering that problem with the AI tablets, but I hadn't given it a thought re the injectables, but I would think the same thing would hold. I did Letrozole for awhile, but didn't think switching brands would guarantee anything better. I became metastatic with it anyway. I still don't know if the others like Anastrozole would work. I might bring that up with my onc next month.

There's been no issue with the injection technique or anything like that. The shots hurt and I don't like it, but they aren't doing a bad job; just as good as most all of them do any time they give them. Intolight did mention a couple of months ago that she has gotten delayed side effects before (she gets them at the same time), but part of this issue for me is that they don't just come later or last longer, they are simply more intense and debilitating. I have read where some have to use ice packs and have difficulty walking, lose their appetites, and more, but my side effects have never been that bad; just a lot of aches and fatigue for a few days. They seem to be approaching that sort of thing now though. The stomach trouble is new and pretty bad too. My scans in March were stable, and my labs have been too, so I don't think it's progression at this point. Just real increasingly bad and intense side effects. Thanks again, so much!

Hippmark - Thank you for your description of what you experience. Mine settled down after I got into the once a month routine and pretty much just made me tired and mildly sore, and that would get better after a few days. These last few times have been something different and I've been much achier for longer, and more tired. Some have said they think the Faslodex side effects are cumulative and that that can explain the getting worse thing. I'm going to try splitting out those appointments again though, and see if that doesn't help, before I go thinking this might just be the "new normal" (I really dislike that term). I'm sorry that you are having as rough a time as you are. I'm not familiar with Evenity. Hopefully, your situation will smooth out. Those initial loading doses that come so close together can really do a number on you for sure!

Thank you so much for thinking of me and for helping me try and tackle this problem. I really appreciate it. Yes, my friend is a very long term and good one. I've known her since I was in the 6th grade. She's one of the old neighborhood gang. I originally knew her sister first and much better, but over the years I got to know this sister better. A group of us old neighbors from those days are still in touch, but some have moved farther away and we don't physically see each other as much. This one friend and I both wound up in the same part of town as adults and have stayed here, so that too has contributed to our staying in touch more all these years.

Going2BeatThis - I'm so sorry to hear that Faslodex hasn't seemed to work. I do hope they gave you enough time with it to really be sure. I hope the Enhurtu serves you very, very well. I just read the other day where someone said it was the easiest drug they'd been on. Does this mean no more Verzenio also? There are many more drugs out there these days, so I've got my fingers crossed for a successful new treatment plan. Thinking of you and wishing you lots of luck with this!

Thx threetree and brutersmom.

I compared the info in today's results with the PET I had on 2/13/25. There are a number of lesions that the radiologist who read today's scan said had increased from the last PET when they had actually decreased.

Have a 4 week follow-up with my ro tomorrow. Will see what she has to say about the discrepancies. If I am correct, then maybe I won't need to change my treatment.

I have not been tested for insulin resistance. I to have gained some weight. Maybe 5 kg in 2½ years (10 LBS) I know when I hit menopause I gained about 20 lbs. These drugs in my opinion are worse than menopause and trigger all sorts of side effects. When i was on letrozole ibhad no appetite. I was always felt nauseous. Now that i am on Fulvestrant I want to eat a lot more plus i feelnlike my metabolism has slowed down. The only thing that I have found slows down the weight gain is exercise and diet. Exercise is why I think I have been able to keep my weight gain from getting out of control. I used to be skinny 110 to 120 until menopause. Since then it is an ongoing battle.

Some people on this site and in FB groups have gotten permission from their oncologist to use the new weight loss drug to help them feel better.

I was taking Ibrance but I got pneumonia. They took me off the Ibrance and haven't started it back.

I take Xeloda in addition to the Faslodex. Just got my butt shots today!

thanks for the responses…I had just started Truqay and I had every side effect with that drug..ended so dehydrated, rash, etc, fever..in hospital 2 days…still haven’t recovered totally…getting 2nd shots today..could not tolerate Kisqali and one other…on Ibrance 8 yrs with no progression

I took just faslodex about 5 years,but not at first. Still no progression. Switched back to an ai.

I have been getting fulvesterant shots for over a year and have had no problems. I exercise and walk the first 24 hours afterward. I work out with weights 4's a week. 2 focus in lower back, glutes and legs

This last shot has been a challenge. The pharmacist says they are the same ones I always get and ingredients have not changed. The shots look like they were in the right location. I had a reaction to the bandaid, first time in about 2 years so know where they gave it. I am allergic to adhesive. The bandaid was a diffent shade of tan this month. My scans were just done 2 weeks ago and were negative.

I two very painful spots slightly below the bandaid marks. My whole lower back aches, hips, and my legs. I have been in touch with my drs office. I am using Tylenol, heat, butt stretches, and will do some walking. I am also gently massaging the area around the painfull spots. I need to message the office back Monday. Until then what else can I do or try to improve my pain?

The bandaid issue was a surprise. I have to wait a little longer because I like to bleed. Sometimes the have to use a new bandaid. I may ask the tonstart using gauze and surgical tape. I am thinking the bandaid reaction may have had to do with getting the flue shot last week. It seems to trigger an immune response and sent my allergies off the deep end last weekend. But I was over that so I thought by the time I got the shots.

Has anyone gotten all over pins and needles (paresthesia) from a fulvestrant shot/low estrogen? After my last shots around the 8th, I noticed a heavier and achy feeling bilaterally in my legs and feet. I thought it was just a post shot issue that would resolve itself in time, but now, over 2 weeks later, I'm not so sure it hasn't been an extra bad reaction. I didn't think it was a sciatic nerve issue, because it was on both sides and the shots had gone really well and were not painful. No injection site pain or bruising, but I continued to have sore, heavy, achy legs and feet complicated by pins and needles all over. I started to think it was computer desk/chair ergonomics, but things only seemed to get worse, after some adjustments, so I'm back to thinking this is likely a low estrogen reaction from the fulvestrant. My mood has been extra low too, I've had weepy spells, and I've had hot flashes and flushing more than usual. All of this points to low estrogen, but I can't rule out some other cause for the paresthesia/nerve tingling either. I haven't gotten in touch with the doctor, but will bring this up at my appointment next week (where I'm supposed to get shots again), unless things get worse beforehand. Any similar experiences or thoughts/comments? Thanks so much!

@brutersmom - Thanks for your comments. Did your care team have anything to say about your situation when you got in touch with them?

Interesting how your last shots really affected your lower body too. I'd just never had that quite so bad and so long. Your bandaid reaction could have been related to the brand they used. I had no bandaid problems and I got my flu shot a week later and had a short routine reaction only. I just don't seem to have really recovered from the extra bad shot side effects to my lower body. I took a "scenic" drive to a farther away grocery store a couple of days ago; something I often do, but this time the vibrations experienced while driving my older car seemed to trigger all this tingling and numbness I got the next day. Then the computer desk and chair ergonomics added to it. It was downright scary and had never happened before. I think it might be related to whatever it was that happened with those last shots. Over the last 2 days things are slowly improving, but I can't deal with this sort of thing happening every time I get shots now. I've had an increase in all sorts of low estrogen type symptoms over the last few months and I don't know why. This latest episode with the shots leading to paresthesia and outright numbness suggests it may well be getting worse.