Faslodex Girls Thread
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@threetree Its sad to say most of the options cause side effects. I have the ESR1 mutation and went from Faslodex to Orserdu alone, and I have so much fatigue, hip pain, have to take Omeprazole every day for the acid, and have intermittent headaches. I’m not saying you would have those side effects, but I also had lots of pain and aches with Letrozole and fatigue and hand and foot syndrome with Xeloda. They all suck.
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Kbl - Just lost a whole post back to you. Will try again later. Damn!
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Kbl
Look all the way past the ads at end of page and look for the drafts folder. Your post may have gone there.
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Kbl - Just got back from the oncologist's and he said that since I became metastatic on letrozole, there really isn't another anti- estrogen drug that I could use with Verzenio. I had been tested for the mutation before, but don't have it. He also said that there really is no lower dose option for fulvestrant. He says my side effects and problems are definitely from the low estrogen that comes with Faslodex and that all I can really do is routine OTC pain management and PT. He gave me a referral for PT.
Gailmary - Thanks so much for the suggestion. I did look down past the ads, but didn't see anything that looks like a draft folder. I do see the "save draft" option, but I never got that far with the post, so assumed it wouldn't have been saved anywhere.
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@threetree I’m sorry there isn’t anything that can be done besides PT and pain management. These drugs really do wreak havoc. I was tested in 2020 after being on Letrozole for a year and didn’t have any mutations. I got tested in September of 2023 and ended up with the ESR1, even after being off Letrozole for two years. I may have told you that already.
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Kbl - Thanks, and well at least I know now, that my problems are indeed from the fulvestrant, and just what my options are, even if extremely limited. Sigh.
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Well that injection went fine, I had an experienced nurse and it was like butter. Unfortunately the pain from laying flat with the bad hip flexors was so bad I couldn't help but start crying through the second one and I think maybe she pushed a little faster as I was in so much discomfort. I kept saying its ok its not the injection! But we are all human and I'm sure my wailing was a bit distressing.
Can't wait to see what new aches and pains come from this one but I truly hope they aren't anywhere close to what everolimus/exemestane did. I miss my old 40 yr old body :(
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@sondraf So sorry for your pain. I didn’t lay down for shots, I always leaned over the table and took the weight off the side getting the shot. Are you unable to do that because it makes your pain worse? I know the nurses hate giving the shots because they can be painful. It makes them feel bad. I had one who would say sorry multiple times while injecting.
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I always lean over the table too and shift weight from side to side they freeze spray it first then my nurse tells me going in and she waits almost done almost done and then it’s out. I don’t think I could get up on the table to do that why don’t you ask the next time if you can stand and just shift weight
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I too stand and lean over a cart they have that contains things like gauze. I shift my weight off the side being injected. I also read something on this thread that standing pigeon toed can keep your muscle from spasming, so I try to remember to do that too. A friend of mine takes me to my appointments and she warms up the vials while the palliative care arnp visits. I get the appointments made as back to back, so the arnp is first and my friend warms the vials. Then when tho arnp is done, the vials are warmed and the regular nurse comes in and gives me the injections. I don't think I could do it lying down on my stomach. It seems like it would be pretty uncomfortable.
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@eleanora I had my Fasoldex & Xgeva shots yesterday. I think the Fasoldex was the reason I had that scary shivering teeth chattering 🥶episode a few weeks ago. Like you I was shaking so bad I called for DH to get me some warm blankets and a heating pad to warm me up I fell right asleep and stayed in bed all day and slept all night. At the time I didn’t connect it to the Fasoldex shot and mistanly thought I was coming down with the flu, but never did.. I’m wondering now if it could have been the Xgeva since it’s a monoclonal antibody? Ughh , anyway, mets just sucks
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Sorry to hear about your experience, but glad I'm not the only one. I had the Xgeva shot before the faslodex injections so I don't know what to blame, only that I 'm terrified of the next ones in 3 weeks. I have mine done at an infusion center across from the hospital so there's emergency help if needed. I'm wondering if the manufacturer changed something in one of the inert ingredients.
My husband said that other than the fact that I was conscious and coherent, it looked like I was having an epileptic fit. I am not epileptic.
Eleanora
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I take the weight off of the muscle for the side they are going in. I also put on numbing cream when I arrive at the hospital for the shots -terrified of needles. My husband and I go into a family bathroom and he puts it on the cream. Then I have a ziplock bag already cut in half and some medical tape. Its a whole production! By the time I am ready for my shots I am pretty numb and really don't feel them being inserted. The discomfort comes when they push too fast or they go into a previous bump. I also find the higher up near my hip is less painful and I have less side effects. I have no idea why? The numbing cream I just bought off of amazon.
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I too use numbing cream (lidocaine/emla). I get the lidocaine prescription from the oncologist. Just never stopped after getting it for my port, that I no longer have, years ago. I use the lidocaine for all shots, IV's, and anything requiring a needle, because I am a big baby and needle phobe. I put it on at home right before I leave for my appointment and secure it with Tegaderm and paper (micropore) tape. (I like the Ziploc idea, luvdbyhim.). Same here, I really don't feel the needle going in; just when they push a bit fast.
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My next loading dose is not fifteen days after my first, but more like counts fingers 12. Is that normal? Ive been foam rolling the lumps and doing heat/cold and they seem to be going away or at least dont look feel like massive lumps. Im going to ask to stand this next time, I cant be laying like last week.
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Stand and then walk it out if you can. When I can, I go for a good half hour or more walk right after, and I think it really helps. Worst thing seems to be to " just sit on it", so to speak. Also, the loading doses can really get you. Once you're on every 4 weeks, it's not quite as bad. Good luck!
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Sondra.on the flip side I would say getting the shots is not bad at all, at all, at all.
Sometimes I don't even feel the needle and my husband can't get over that cause he thinks it's big. I have never looked.
I can honestly say in the 7 years getting those 2 shots every month that it might have hurt all of 6 times. The Blood test first pinches for a few seconds but it's over quick. Shows how we're all different.
Good luck
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Gailmary - You are so lucky! Seven years, and little pain. I hope Sodraf and the rest of us can be as lucky as you! Thanks for a different perspective.
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@gailmary , I'm relieved to see your post and I am so sorry for all of you that have pain either at the time of injection or ongoing from faslodex.
I just got my injections today, 4 years and 4 months. I have only had post injection pain once and it was maybe the third shot ? That time it seemed like the nurse hit a nerve . The other 53 months of faslodex have been unremarkable and I also barely feel the needle. I get my shots standing, holding on to the counter and take my weight off the side of the shot in process , then switch sides. As far as side effects I do have some joint pain in my fingers that I had when I was on femara many years ago . I am not on xgeva so don't know if that contributes to some of the side effects many of you have had to endure .
@sondraf I sure hope that standing while getting the injections is less painful for you. I am so sorry about the hip flexor pain you had with the first set of injections.
@eleanora , @shanagirl and @threetree - I am so sorry you've had these side effects recently .
@gailmary 7 years ! Wow ! Since these have been very tolerable for me you give me a lot of hope :)
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Conveniently I have to walk to the Tube station at least 15 minutes, stopping to pick up a treat, then stairs and standing on platforms and trains so there is good movement right away after the injection. Maybe I'll start massaging the area(s) while waiting for trains.
My potassium level is below normal/very low right now too after anorexia on everolimus, so will be supplementing from tomorrow which will probably help a lot of the issues I've been having in general with muscle aches, pains and cramps and just assumed was side effects!
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Question: I'm noticing a pattern. When I get my Fulvestrant injections, I have sleep disturbances (wakefulness in the middle of the night) for a couple of nights after the injection, no matter how tired or how much I've exercised those days. Anyone have sleep disturbances? I seem to settle down a few days after injection.
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I’ve noticed that too. I try to just stay in bed all snuggled in and tell my brain to shut up. If that doesn’t work then I go p, have a low dose gummy and cig, then back to bed. Only seems to be a night or two.
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Alright Im back in tomorrow for my next loading dose and this time I will be insisting on standing. One side I was able to massage and heat the lump out, but the other side not so much. Ill look into getting small attachable heat packs for the journey home though, anything to get that castor oil moving!
Curious to see how aches and pains are this time around given the potassium loading, all I really noticed amongst the fog of the other pain was some additional fatigue day 3 or 4 but honestly, that could have been other stuff as well.
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So I got my second injection Monday and Im a little concerned that its in the middle of my buttock. Is this right? The first nurse shot it high in the hip to the point I wasn't sure if it was my hip mets or the injection that was hurting for a week after. This seems really low though. Will the medicine not work if its not in the hip?
Definitely getting the bone pain with this one but nothing compared to exemestane so Im ok with it.
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Does anyone else on this drug get a migraine type headache from it, i.e. a " hormone headache" from the resulting low estrogen? I've never had headaches like this until I started taking these stage 4 drugs. I'm not sure if it's the Faslodex or Zometa. Ever since I started Zometa last mid November, I've had more of these headaches with pain behind my eyes, lightheadedness, and sometimes what I believe is an "aura", e.g. flashes of light, weird occasional visual things, and a lot of light sensitivity and eye pain. I get brain foggy and sometimes off balance too. The onc doesn't think it's cancer spread to my brain. While the symptoms seem to fit more with low estrogen/ Faslodex, it only really started after beginning Zometa, and I only had a little of it before. I had my faslodex shots yesterday and my head is just killing me this morning. It's a beautiful day out and I'd love to go for a walk, but when I look out the brightness makes my eyes hurt and between that and the head pain, I feel like I'm stuck inside sitting around all day. I've had the fuzzy brain, lightheadedness, and eye sensitivity a lot over the last few days, but not the killer headache until this morning.
Can anyone relate to this in any way? Any thoughts, suggestions, or possible remedies? Thanks!
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Lidocaine cream is available on Amazon. People who get tattoos use it before their sessions. It’s the 5%, I got it for a bad leg wound last year. No ink for me!!!
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Am posting after a long gap. Want to let you all know that I had my recent Pet scan this week and got all clear.
My first diagnosis was in 2004 and recurrence in 2021. I am on my 29th cycle of Fulvestrant and Ibrance. In December 2031 I had mets in spine, lungs, liver adrenal glands, chest walls. My latest scan this week showed complete resolution and complete response to treatment.
So there is always hope..
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@malebreastc so happy to hear that!!
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malebreastc - Just saw your post on the Ibrance thread ( I'm on Verzenio, but read the Ibrance info), and wished you well. Wishing you well again here also. Good that you are back.
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