Faslodex Girls Thread
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Crone, you made me laugh....at 5:30 in the morning because I had one of those steroid nights!
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Ok, I had my first Faslodex shots today and I did not feel anything. I hope it wasn't beginners luck. I also had Zometa after a 6 month break. I had jaw problems and will now have it every 3 months. It is 7 PM and I am in bed for the night. Just feel tired, so will watch TV in real comfort. Goodnight all. Have a great weekend. Barb
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Enjoy your comfy night of TV, Barb. Glad you had a good experience.
Tina
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glad to hear it went smoothly for you Barb. The only side effect I can count on each time is being more tired for about 3 days.
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Monday morning and third day after first Faslodex shots and Zometa. Since I live in FL I am on back porch with sun streaming on me. Feels good because I feel slight soreness over my whole body. Not much appetite either. My stomach seems to sure growl a lot. Wishing you all a great week with positive thoughts . Barb
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I am in the waiting room, having my first shot. Aromacin not as effective any more, some progression this time. Sacred
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Hope everything went ok I tolerated the faslodex much better than the ai
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Wilsie2, welcome to the club. I hope the shot treated you well.
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it is the first time I am worse. I knew it wouldn't last forever. 2 years since my recurrence. At least I am not back on chemo yet. The worst thing is having to tell grown children. The shots weren't bad, will know tomorrow if side effects. Long day, time to rest
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Hi everyone! My mom, whose English is limited and has no internet, has just been given approval for Faslodex and will be starting next week now that Aromasin has failed. I will be reading all of the previous posts to her and start finding out all I can to try to make the new treatment easier. Hopefully this change in treatment will bring her less pain than the last -- though no one can confirm what's been causing the pain yet. Any and all advice is welcome
PS - Tina72 - Is that a Westie in your pic? So sweet!
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hi Canadagirl,
My dog is a mutt, her name is ginger. We got her for my boys and she is now my girl, with me every second. I think animals know when we don't feel well. I hope your mom does well on faslodex. I see a nutritionist and she has me on a bunch of vitamins and it really helps with my energy and joint pain. I had to stop them for surgery then the surgery was rescheduled last minute so I was off them for two weeks and I felt like dirt! Really helps with my joint pain.
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She's so pretty! They do seem to know when we don't feel well. Mine get especially concerned when they see me cry and my adopted hound/doberman mix actually whimpers and puts his paw on me when I'm upset and stays until I get up. Gotta love dogs
Can I ask what vitamins you're on? My mom is on high doses of vitamin D and calcium, but so far that's it. We're open to trying anything that might help her joint pain.
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has anyone here heard of Bazedoxifene? Supposedly an oral drug that works the same way as faslodex?
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I hadn't heard of it, but a look through Wikipedia says it's a SERM (selected estrogen receptor modulator). It's in the same class as tamoxifen. It's approved in Europe and apparently at the FDA for approval in the US (didn't verify that part).
Faslodex is a SERD (down-regulator).
That's all I looked up. I have no idea where this might fit into the armamentarium.
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Look up Wardell's posts. We had a huge thread on this. I think the name was "Have you seen this".
We are going to have a hard time getting our greedy mitts on this.
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Oh. it's THAT drug? I'd forgotten the name (along with my name and all the others). Yes, "Have you seen this" was the name of the thread.
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Hi Blainejennifer,
Thanks for sending me to that thread. Why can't they give it to us "off label". I think it is approved in the US for osteoporosis but formulated with estrogen - no good for us. Today - I am feeling like things are not fair.... but give me a good night's sleep and I'll pop back to the sunny side. Promise.
Janet
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good morning everyone! Well, I officially joined the fanny pack yesterday afternoon. I'm lucky, The district nurse comes to the house to give me my injections and she's the same one who comes every 4 weeks to give me my xgeva shot so I know her well at this stage! I have a fractured tibia in my right leg, so changing weight from one leg to the other for the shots wasn't going to be possible. The nurse suggested sitting sideways on a chair, leaning over a table and that seemed to work well. Think that's the way it'll be done for the foreseeable. For the moment, no major se's. The injection sites are a bit sore and slightly bruised but nothing major, and my stomach is full of wind. Hope that's all I'll get, but Is early days yet so I'll let you know!
Nicky
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Welcome, Nicky. I hope Faslodex works as well for you as it has for many of us. Today is my treatment day, so I'm in line for my Fas and quarterly Xgeva, and probably labs this morning. I go to a cancer group, and I usually feel like "I don't belong here" when I walk into the waiting room, as most people are older and don't look well. I think it's great that you're able to get your shots at home, even if it is due to a broken leg.
Best of luck to you. If you do start to itch down the line, remember you can take Benedryl, and it does help.
Bazedoxifene- yes, I don't understand why we can't have access to this drug in it's pure form, as they have in Europe. It seems that the drug companies are calling the shots (literally) and it all depends on what is the most profitable for them. They chose the osteoporosis route, letting those of us with mets go without.
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Welcome Nicky. House calls, huh? Sorry about the leg -- hope it's heals well and fast and that Faslodex treats you well. I go next week for the usual.
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Welcome to the Fanny Pack, Nicky. I'm sorry about your broken leg, but pleased to learn that you are getting home care and things are going well for you. Keep us posted.
Tina
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does anyone get migraines from faslodex? Twice now I've had auras in eyes ringing in ears and headaches Was going to mention to onc next time. My mind immediately goes to mets and I'm trying to talk my self off of a cliff
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thanks for the welcome everyone!
Actually, the home visits aren't because of my leg. That's how it's done here! I was at the hospital on Tuesday to see my onco and have my herceptin infusion, but since the beginning I've had my xgeva shots at home and the faslodex shots will be the same. I'm now over 24 hours since the first round of shots. No major problems so far; hope that keeps up!
Nicky
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Maureen, I didn't see it mentioned on the other thread, but of course anything is possible. I wonder if it might be due to the lack of estrogen?
Or maybe the adjuvant (stuff the drug is dissolved in) in the shot -- in this case castor oil? Could that be a trigger?
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thanks for the response pajim. Didn't see this anywhere either so I will mention to onc at next appt.
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I haven't had a migraine while on Faslodex at all. In fact, they went away with my menses. Don't miss either one, to be honest. Good plan to chat with your oncologist.
*susan*
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No migraines, ever.
Tina (Lucky Girl)
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in love with this new thread..no more scrolling down hundreds of notes...... for now
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Hi ladies!!
Just wanted to chime in as a longer running Faslodex girl (24 months!). The worst side effects I experienced were almost like getting a baby chemo... Muscle aches, fatigue, nausea, etc. after maybe 5-6 months it started to subside a bit. For the most part my long term SEs are injection site pain with neuropathy (numbness) from both sites into my hips, joint pain, fatigue that usually subsides after about a week, and insomnia/restless legs. Oh and no one mentioned the unusual smell of your urine for a while!!! Lots of water helps to flush that out lol. I hope everyone is well!
Amber
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Anyone here have total hip replacement surgery while in treatment with Faslodex? Apparently cancer patients are required to stop taking tamoxifen among other "hormonal" drugs for a number of days pre-surgery. Since fulvestrant is in a class by itself as an estrogen down-regulator and monthly injection, I don't know if it is included in this category and I cannot find the answer online.
All hip replacement patients get blood thinners for a number of weeks post-surgery. I have learned that cancer patients are at an increased risk for blood clots and that Faslodex can increase that risk. So, do I forgo my injections the month before/after or...?
Naturally I'll ask my onc what--if anything-- we should do when I see him later this week, but would appreciate input from the Fanny Pack regardless.
Tina
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