Faslodex Girls Thread
Comments
-
Hi All. I'm new to faslodex. I've only had the shots twice, so far.
I haven't had any problem at the injection sites. However, I do feel "off". Fatigue is worse. Also, short spells of weakness that come and go. More allergy trouble than normal, which leads to a cough from the drip (tmi). Hot flashes, which I had on letrozole, but they had stopped. Indigestion is slightly worse too.
I realize that could be from the disease. Anyway, do some of these sound familiar and might they ease up after a while?
0 -
Hi, Muddling,
I started Faslodex in June. I was on letrozole before that for 13 years.
I am having more allergy trouble, as you described. I told my MO and she told me that that was the first time they had heard that. I was surprised, because it started pretty quickly. It didn't cause me to cough, but I think that's probably a function of plumbing. But dripping and congested. Worse now that I've added Ibrance. Same situation with the hot flashes. I was long past that with the letrozole, but now getting them again. No real problems with indigestion, but I do take omeprazole because I have a hiatal hernia. Could it be reflux-type reaction instead?
0 -
BevJen, have you considered using Claritin for your allergies. Search
the message boards for info on this stuff likely with links to studies. Apparently it's an
anti-cancer agent of sorts.Otherwise, none of the side effects you ladies are listing seem to be a problem for me yet reading up on faslodex I wouldn't be surprised if it is responsible. I must not have much for side effects. Sometimes a mini-hot flash in bed. Allover achy body can get bad though particularly legs if I overdo things. No reflux anymore or feeling particularly weak or tired. So lucky maybe. I got my shots today. It hurt today. PA heard how last months shots felt like my skin was burned on my behind allllll month. She said it must have been injected in a pocket. WHatever that is. I thought she meant a space between fat and muscle. Either way she said I'm finding the shots very tolerable cause that's the first she ever heard me complain about the shots. She said yes scar tissue could become an issue with years of injections and they could probably inject in the thigh but with little fat there it would hurt more. Shots for 2 years now. Then I remembered hearing that a version of faslodex in pill form is in trials. I hope that wasn't a dream, though I really do prefer injections to remembering to take pills every day. I take enough in supplements and such.Gailmary
sc
0 -
Kristin, why do you think you are going to need more pain pills or anxiety meds on faslodex? I've been on it 2 years. The first ye arwith letrezole and only now I feel a need for a pain killer and then usually just to sleep. Yep, it sounds like anxiety. Try meditating when you get a quiet moment. I found that helped my anxiety levels.
Gailmary
0 -
Hi, Gailmary,
Thanks for the suggestion on Claritin. I take loratadine, which is the generic, every day. I do think that my issues are compounded by Ibrance. I've especially seen it during this second cycle on Ibrance, but it started when I started faslodex. Guess I will live with it if the drugs work!
0 -
Hi Faslodex Girls!
This is my first post in the forum that I found very helpful with lots of useful information. I'm from other country and English is not my native language so I apologize for possible mistakes. I have been on Faslodex since May fighting with lung mets. My blood tests show leukocytes going down and calcium level is rising. As far as I know both of them might be signs of bone mets that makes me very worried. Can Faslodex effect on leycocytes and calcium levels in blood? Please share your experience. Many thanks in advance.
0 -
It appears Faslodex/fulvestrant is not on my insurance drug list or formulary.
I have been waiting a week for it to be approved, not even thinking it wouldn't be covered, just assumed they were slow, but I just checked the drug list and it's not covered. I'm so upset and scared. I just got diagnosed this week and I've been just sitting here waiting and waiting for a PET scan or drugs or something to happen and the insurance company isn't doing shit.
Does anyone know of a cost reducing program I can look into? Another drug I can try? Kisqali I think is the other one she was going to put me on, which I think is covered. I'm so screwed.
0 -
Lauren I'm so sorry. I find that horrible that a cancer drug would not be covered. Check back with your doctor and let them fight for you. Or maybe they can prescribe a generic brand possibly or something similar that is covered. Try not to worry yet. Even if you have to use another drug, all of these meds are pretty good now. Keep us posted and good luck.
0 -
Lauren,
Is your doctor recommending faslodex as a stand alone drug? that would be unusual. If it's in combination with Ibrance or Kisqali, it seems to be more comment that docs would prescribe letrozole, aromasin, or arimidex. Those are all available in generic form and I would guess most insurance formularies cover them.
FYI, there is apparently now a generic form of faslodex -- a while back, some of the folks on this thread were saying that they were getting it. Faslodex/fulvestrant is the injected drug; docs don't usually prescribe it alone now, because a relatively recent study said that it works better with one of the newer generation drugs (Ibrance, etc.)
I'd check back with my doctor.
0 -
Thank you so much for the responses. I have an update from my 2am freakout:
1) The PET scan has been denied - they need more clinical information. Hopefully my dr. will take care of that today and I can get it scheduled for next week. I can't have my neck nodes removed until then, so it needs to happen.
2) Fulvestrant/Faslodex IS covered, not very well, but it is covered - I was looking in the wrong place. So that freakout was unnecessary, but...
3) BCBS never got a request for it. They said it would take 3 calendar days to approve it, but they never got it, so I've wasted a whole week because I was supposed to start Monday.
So while I am doing better than I was at 2am, I'm still flipping out. This sitting on my hands doing nothing but feel my cancer growing is making me crazy. I should have done all this investigating yesterday while I still had a chance to get something done before the weekend. Live (hopefully) and learn (hopefully).
Thanks for listening and your support. I look forward to sharing happy news in the near future.
Lauren
0 -
Lauren don't worry too much. A week or so won't make a difference.
By the way, freaking out is what we do best.
0 -
Hi ladies,
I guess I'm joining the Faslodex girls as IB/L is no longer working in my favour. Thank you all so much for your comments and wisdom from previous pages as it helped when I was preparing for my first dose. Your advice regarding taking the weight off the side of the shot was perfect, and my nurse also administered an 'Emla' patch on each side for an hour before the shots. Didn't feel a thing and only had fatigue and nausea the day of the shots. I am hoping that this new Tx will work for a long time with the Ibrance.
The new oral drug that is being discussed as a replacement for faslodex is called Lasfoxifene; here is the link; https://clinicaltrials.gov/ct2/show/study/NCT03781063?term=Lasofoxifene&cond=Breast+Cancer&rank=1 It is being fast tracked by the FDA as results have been promising. This trial may help anyone that can't get faslodex approved through their insurance.
Wishing you all the best and will let you know if any side effects occur!
0 -
Esperer...thanks for posting that info. Wouldn't that be wonderful! No more butt shots!
0 -
Am I the only one who likes the darn shots? I was on letrozole for 13 years prior to faslodex and Ibrance, and I HATE pills. I'd much rather have a quick set of shots in the butt once a month than have to take a pill every day. Moreover, for us folks on Medicare Part B, that shot is covered. I don't want to get another huge bill for another drug...
0 -
BevJen, I won’t say that I like the shots but the side effects are definitely better than the letrozole. I have little soreness and I get them the same day as zometa so needles on the same day is a plus for me. I just wish the Halaven was on the same 4-week schedule. My nurses are good with the shots. I’m not on Medicare yet and I’ve had good coverage from my insurance. I think keeping track of all this medical stuff is a nightmare.
0 -
I prefer the shots too but I've been warned that if youre lucky enough to be on it for years that scar tissue from injections could develop making it more difficult. 2 yrs for me now. Only one bad experience.
ESPERER, May faslodex be as easy for you as for me.
Gail Mary
0 -
I don't mind the shots too much except that I have sciatica due to where the tumor is and I think the shots may aggravate the pain.
0 -
Thanks Gail Mary fingers crossed, I'm feeling good so far and not missing Letrozole at all. 0 -
I also have found Faslodex a breeze to live with, and after years of allergy shots (to no avail) it's just 2 more, albeit larger and in the posterior side.
0 -
Hi ngeryone,
I read a few pages back and it doesn't appear that any of you are having the particular side effect I'm experiencing on Faslodex and Verzenio. I know it sounds crazy ( it feels crazy!) but on the AI's I cry. So bad that I am no longer working. I spent as much time in the bathroom trying to stop crying as I did working. It was very humiliating. Also, I couldn't do my job like I used to. I forgot simple things, I could not multi-task, I forgot my words and I could no longer explain something to a customer that was so basic it was ridiculous. I work in banking and one day I couldn't remember the word "transaction".
Am I the only one that has had the emotional and the slowed mental (like chemo brain) side effects?
By the way, emotional regulation is one side effect listed on Faslodex I think. I was diagnosed with mets to the bones in November 2017 and have been on the same treatment the whole time. I haven't worked since December 2018. I wasn't able to get back to work and am now on LTD and in the process of applying for SSDI. I've been in banking for over 25 years. My co-workers in the call center were some of the best people I've ever worked with and my job was my "happy place"
I hate it that it came down to quitting treatment or my job. I stopped taking letrazole 3 years after starting due to crying. Not like the crying I was having recently but it was either quit it or quit my job. I chose to keep my job. I'd do the same thing again if I had it to do over. Now with mets, I can't quit treatment.
I take meds for depression and anxiety but have done so for nearly 20 years and I was still able to do a great job at work. I hope I am not coming across as a whiner but I can't believe I am the only one that does so bad emotionally and with such brain fog on Faslodex.
Thanks for being here and listening.
Jenny
0 -
Ive had bad spells of crying also but not on the verzenio. That was a fadlodex ibrance and letrezole ad xgeva combo for me. It passed. My husband always sakd that i was depressed. NO. I experienced that befre. Some anxiety , sure. But really just emotional and crying lots.
Good luck
Gail Mary
0 -
Thanks Gail Mary, I posted this on the Faslodex thread too. I agree, the physical side effects are from the Verzenio I think and the Faslodex is the culprit for the rest.
0 -
I mean the SSD thread oops
0 -
Spiced, you are not losing it.
While I am not on Verzenio yet (will be starting next week), I have been on Faslodex for about 20 months and yes, I have experienced some emotional issues (in my case it’s irritability - I had the same problem many years ago on one of the AIs, had to switch as it was like having PMS every waking moment!).
My memory SUCKS! I was just complaining about that (and case in point, I cannot for the life of me remember the other AI - I was on Arimidex most recently but the other one that caused the problem? Total blank.) 🙄
I think it’s amazing that you posted this given that I was just discussing my frustration with my inability to remember simple things. I’m still working full time but think it’s time to scale back. Don’t plan to quit completely but certainly looking at strategies to make it easier!
Cut yourself some slack. Not only are there issues with estrogen deprivation but, you’re under a lot of stress. It’s no wonder that our brains dump the extraneous bits!
Hugs. Pat
0 -
Sadie - you made me smile.....sorry you have the really fun memory issues too
0 -
Femara! That’s it! OMG....
0 -
Spicedlife. My emotions on I/F lean more to instant fury--a much quicker response than when I am off these meds. The brain fog is real. I am a homemaker, but I lose track of conversations with DH all the time. I will literally blank out mid-speech. This is exceptionally atypical for me and just makes me crazy. As Pat mentions, the removal of estrogen from the brain has some big impacts. You are not alone in this.
Hugs
0 -
Yes, I blank out too. Also, I do get furious on the highway sometimes and I was never like that before. Everything seems to freak me out. Before I was diagnosed with cancer I took estrogen therapy for my depression and it's the only thing that really helped. Of course, I can't take that now.
I too will be talkin and completely have no idea what I was saying and also I have a problem saying words even when I know what the object is that I'm looking at. And names, don't even get me started.
0 -
hello ladies - has anyone experienced a terrible pain at the site where you took the faslodex shot? I took the shots on Friday last and I have had a excruciating pain on the right side buttock. An Advil seems to alleviate but only a little. I have never had this happen before and I have been onfaslodex for a year now...
Not sure what to do or how to help the situation.
Thanks
Priya
0 -
Priya,
At best, your "injector" gave the shot too quickly/forcefully, which happened to me once, but he pain disappeared within the day. At worst, the injection hit your sciatic nerve. Three days is a long time to put up with that level of pain, which is not normal as you know. I would call your clinic's office.
0
