Faslodex Girls Thread
Comments
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Hi Momdin,
It is my understanding that it is possible that tumor markers can increase due to inflammation and other non-cancerous reasons. Interestingly, my derrière lights up on PET scans secondary to Faslodex injections! I think the timing of my last 2 PETs were about a week or so following injections. Hopefully, your MD will try a lower dose of Ibrance. I felt better before knowing I had cancer...meaning the side effects from cancer treatments suck! I feel like my energy has been robbed, but I am grateful for the treatment. Wishing you all the best.
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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
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Pamela. You are not alone here. Everyone is so friendly and willing to share knowledge and experience.
I dont think your pain experience is unusual. I get xgeva and faslodex with no problems. Butt is sometimes sore a few days if i sit on it wrong but i just reposition myself. 2 yrs now. I am however sore from working crazy pulling weeds. I call it my therapy. Beats going to the gym.
GAILMARY
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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
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Pamela, I get all over bone pain from day 2 - 5 at night, which I have to take an oxycodone at bed. Then days (again nights) 14-16 I get hip & knee pain which I can just take a couple of tylenol. Because I'm on a trial I have to keep notes which is the only reason I know it happens every single cycle.
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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
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thank you for your reply. I feel better knowing there are others with understanding
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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.
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Even taking the notes I must for the trial, it took me quite a while to figure out the pattern. And longer yet for my GP to convince me that oxycodone would really help with the bone pain. it does & now I take it, but only for those 3-4 days when I know i will need it.
Tina, I probably won't be changed over to generic as I'm in Canada & we are such a small market that we get generics behind the US. My MO indicated that I'm probably going onto the trial for the new oral fulvestrant soon.
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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.
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oof, having wicked dizziness and nausea here on day 2-3 with the generic fulvestrant
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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.
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Momdin, yes, I have a cough that comes & goes. MO has listened to my lungs, I get a CT every 12 weeks, everything is clear. It's like a throat irritation rather than a lung issue. GG
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YESSSSSS you described it perfectly!!
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Acid reflux causes an annoying cough. If it feels like a throat irritation, try treating for acid and see if it does not improve. I have an issue with that and am on prescription meds for acid reflux. Protonix and Zantac. And still sometimes have break through.
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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.
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Hi Grannax,
I’vebeen following you on the liver mets thread. So sorry to hear about your progression. Faslodex can be given alone - that’s what I’m on. They might also consider adding Verzenio. While it’s similar to Ibrance, it acts a bit differently so may be an option. I’m hoping to add it to my treatment now that it has been approved in Canada. I’ve been on Faslodex alone for quite awhile and worry about the clock ticking down!
I know the wait is terrible and hope you hear from your MO first thing Monday. Perhaps the delay is that they are planning their strategy carefully.
Hugs. Pat
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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
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Hi, Baywitch,
I just had my last injection a week ago last Tuesday. That was my third. One nurse does them, one side at a time. She either has me lie down on a bed or stand with the bed up as high as possible (I'm a tall gal) and I lean on it. I stand on my one leg (the side not getting the shot) with my other leg kind of hooked around the one I'm standing on so as to keep weight off. I also take Claritin or loratadine to avoid any of the side effects. But this business of two people giving shots? Not the way they do it at my center, although I guess it works. My nurse only does injections, so she does them very slowly, and also asks me if there is any burning to tell her -- if that happens (has only happened once) she slows down the shot.
Hope this helps.
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Baywitch,
That is unusual. Are you standing or lying down? Most of us get one injected one cheek after the other.
Tina
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I am standing leaning over a table with a nurse on each side. I remember the first injection they asked me if I wanted to have two nurses admiinster at the same time, and I guess i must have said yes. I don't remember reading about anyone else doing it this way. Fortunately I have had no SE's or even soreness after.
Kathy
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Kathy,
Hey, whatever works! Happy you have no SEs!
Tina
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Hi, I’m a lurker on this site. I’ve had many months of shots with mild side effects, nothing to really complain about until last months’ shots. One of them looks like an open wound. No bleeding but red around the oval shaped wound with like a firm white substance inside the wound. It’s about an inch long. I talked with the dr on call ( weekend, of course) and he prescribed a five day antibiotic. A little bit of the redness went away but that’s it. No fever or chills. Mild pain when brushed up against clothes. Has anyone ever experienced this? My shot was on July 17.
Thanks for an replies.
Suzy.
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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
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Pat is it possible you got a dose of the new generic faslodex and are indeed having a reaction to it?
GAILMARY
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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!
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No, i’m In Canada so our process is a bit different. I order and pickup the drug from my pharmacy and then take it to my general practitioner for the injections. I can guarantee that it was the “original” Faslodex.
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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.
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Hi, Kristin,
just chiming in here to tell you not to worry about faslodex so much. I was on letrozole for 13 years and had MANY aches and pains throughout that. When it failed, like you, I freaked out a little bit about faslodex, especially the idea of getting shots in my behind. The first set of shots I got -- I laid down to get them because I was so scared. I broke out in a cold sweat. No need for that! I barely felt the shots and the side effects for me are much less than with letrozole. And the only side effect that I have, really, is hot flashes, especially at night. MUCH better for me than letrozole.
Get the shots standing up. Put the weight on your OTHER leg from the one getting the shots. Take a deep breath when you are being injected. Take Claritin or loratadine three days before, day of, and three days after (I found these tips on BCO). Finally, I have the nurse doing the injection give me two ice pacs for the ride home -- I live about an hour from my cancer center, and I just pop those things behind me as I drive. By the time I'm home, I don't feel the shots at all.
Good luck.
Bev
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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!
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