Faslodex Girls Thread

Try coconut oil with rose hip oil. It's helpful.

Thank you will try it.

Hello All!

I haven’t been on here for a long long time. Just thought I’d pop on and read for a bit.
I’ve been on Faslodex now for 6+ years and tolerating it quite well.

Every once in a while they’ll hit a nerve and I have some discomfort but most of the time it’s uneventful. One time I did suffer with a cold wet feeling down my right leg - a bit of nerve damage that lasted a few months but passed and the nurses have been very careful since.
I also take Arimdex (brand name as generic gave me terrible side effects) since 2013.

I’ll try to catch up and get to know you all a bit better but just wanted to say hi!

Marie

Lost my signature so adding it here.
2009 DX E+P+ her2- Mastectomy left, chemo, rads, tamoxifen
Recon 2010-2013 with implant (gummy then swapped to saline) and breast reduction x2 and tummy tuck

Recurrences/mets: right femur 2013, sternum 2019, sternum 2022, right collar bone 2025, right collar bone 2026

Radiation 2010 left breast, 2013 right hip, 2019 sternum, 2023 sternum SABR 

Cryoablation 2025 right collar bone (no more radiation)

“Cyst” removal 2026 right collarbone ended up being more breast cancer

Tamoxifen 2010-2013 (se lost partial hearing left ear) switched to Arimidex 2013.  Faslodex 2020 w/Arimidex

Good morning! It is heartening to hear that a few of you have been on Faslodex for multiple years! Which means it is doing its job. I just started this past month with the 2 sets of shots to ramp up. The shots themselves are the easy part for me. I am plagued with dizziness when I lean or lay back or to the right. Once I am up for the day, I can manage well enough. But bed is a ride every time I turn or toss or get up to go you know where. Has anyone had this type of dizziness and successfully resolved it?

Plus, last Friday I had hives on my eyelids upper and lower. My docs told me to take antihistamine daily and happy to report the hives are receding! But not the dizziness.

My radiologist Onc and my MO are not sure if the dizziness is from the SRS brain radiation I had 2 weeks ago or from the Faslodex I started 5/28.
I see my MO next Tuesday and expect to be put on Verzenio in addition to the Faslodex. I just pray this dizziness goes away before I am hit with Verzenio se’s. To be seen! But I’ll deal with whatever to get this disease under control…. Got too much life to live!

Thanks for listening! Welcome back Marie @mkirkwood! Hi @eleanora @gailmary and others on this thread. Happy hump day! xo juliana

Hi Marie @mkirkwood - thank you for your sharing your experience! I have medically controlled hypertension for last 6-7 years so not concerned about that. I did have SRS radiation for two small brain mets 3 weeks ago and all my research seems to point to that procedure as the most probable culprit for my vertigo, not the Faslodex. I did try antihistamines but they did nothing for me. After consulting with my RO, I am seeing a neurologist next Thursday to be checked out. They may do my next brain mri sooner that 4 months - we’ll see.
I’ll be in touch with updates.

All- Hope the fathers in your lives have a great day! Warm regards! xo juliana

Not now but my NP mentioned it in the last visit. Is it a good combination?

I'm wondering if anyone has tingling fingertips from faslodex. Or am I scrolling too much?

@Rosebessie - If I remember correctly, the first part of this thread, started years and years ago, notes a lot of tips for dealing with the shots. I don't get the shots anymore, just as I am no longer on Verzenio, but are you sure that they are being administered properly? Nurse technique is really important. I always found it helpful to put my weight on the side not being injected, and then switch for the other side. I also had to constantly remind the nurses to please inject very, very slowly. They would if I reminded them, but they tended to want to be more quick if I didn't. I also had a friend who would come with me, and I would tell her and the nurse that I did so much better if we could just chat through the whole thing, so I would ask the nurses about where they went to school, their children, etc., and my friend would always chime in with stuff from our old school days, etc. and the nurses would ask about how long my friend and I had known each other, etc. It made things so much better. We also played old "60's Motown" music - something that my friend and I had grown up with and always found helpful when you needed some uplifting. Turned out that so many of the young nurses were familiar with it and new a whole bunch of the songs, which really surprised me.

Doing those things really helped with the injections, and I think then led to less trouble when I got back home. I had mild red spots where they injected, sometimes minor bruising, and then some manageable aching for a few days after. I would also feel s slight chest pain and kind of like my body was temporarily "overwhelmed" in general, for a couple of hours or so after the shots. It was always helpful to take a walk after to help get that stuff moving through my body instead of having it just sit there in my hips. I also stood at a counter for the injections and didn't lie down, although I know some do. I think all of these things I've mentioned helped to make things smoother as the days and weeks went on until the next injections and then starting the process all over again at 4 weeks. I actually never needed ice packs or heated car seats for the ride home, etc. as some have said they did. Again, I think it all starts with the nurse technique and injecting very, very, slowly throughout the whole thing. Shift your weight onto the "not getting injected leg" and then switch, and some also said to stand "pigeon toed" while doing that. I also found that that helped too. They say if you stand pigeon toed, you prevent some muscle thing from happening. I just can't remember what specifically.

Sorry for the long post, but if you go back to the beginning of the thread and comb through it a bit, you will see that a lot of people posted many tips on how to make the injections "doable". I'm sorry you are having all this trouble with them, and I wish you the best in finding a solution that works. I got a good 2.5 years on the Verzenio/Fulvestrant combo, and others have gotten even longer times. Give it your best shot and as always ask for more tips if necessary.

@Rosebessie - I just want to second and underscore what @brutersmom said about the temperature of the drug when you get it (and her post in general). I forgot to mention any of that in my post above. When I first started getting the shots (spring 2023), they still refrigerated them, so my friend who comes with me would sit and roll them over and over through her hands to warm them up, while the nurse did all the initial asking questions, taking vitals, etc. By the time the nurse was done with all of her routine questions, etc., the vials were usually warmed up considerably and the shots went as described above. During the last year of my getting the shots, they had changed the policy, as brutersmom noted, and they no longer refrigerated the vials, but kept them at room temperature. My friend no longer needed to warm them, and she felt a little "put out" that she was no longer needed for the job, but no question, it was all easier once they started storing the vials at room temperature. My friend brought up a good point though, I thought, when she said room temperature still is not as warm as they could be when some warm them like she did (others warm them themselves, by putting them under their armpits, in their bras, etc.), so that there still might be an argument for continuing to warm them beyond what the clinic does.

Hi Faslodex girls, thanks for getting back to me on my Faslodex management enquiry. @threetree I 100% appreciate your long post and the tips youve so kindly shared with me. I should have mentioned that. 1. I get the shots warmed up first. A tip i got from the Monday Zoom group. First time I sat at nurses desk holding them in my hands for 45 minutes because the nurse felt it wasn't necessary when i asked him to do it. Second time the nurse agreed to do it for me until it was nice sbd warm. (yes, a male nurse). However, youve introduced me to the new protocol of no refrigeration. Snd, yes, toom temperature may not be adequate. My nurse's hands were very warm…way above room temperature. Being a healthy, youngish, male in his mid 40s. 2) Good thing is he actually injects very slowly taking over 10 minutes, pausing as he proceeds, while we chat. I have my phone playing lovely soothing music while I lie on my stomach. My chemo centre doesn’t have a counter so standing for the shot is not workable. Is standing the standard practice there was that your personal choice. My nurse injects them consecutively and gently as I lie on my stomach. I went for a walk when I got home after my last injection and i know I felt better for it. My 3rd injection is next week and im thinking I need to change something 🤔. Ill look at the other tips shared over the years for tips. @brutersmom Its been a while since the Ibrance discussion wall. Its great to touch base again. Thanks a lot for all the useful tips. Your injections aren't refrigerated? All the time or just for the day? . Either way, that's very interesting because clearly they dont "spoil". Right? And youve never used an ice pack? I was in pain both times and the ice helped ease the pain. But again, maybe it caused the injection site bumps? Ill have to do something differently next week. I just need to find out what that is. @shanagirl im glad to "meet" you here. Im sorry youre not well but glad for you there's no progression and, youre getting better 💗 💓 . 4 years on Verzenio makes you a veteran of the drug. Im just 3 weeks on it so far, having stopped briefly after 2 weeks to get prophylactic treatment for low Neutrophils. I hope you feel better quickly. The Verzenio break will give you time to recoup your strength. Have a lovely day. Hugs 🫂 to all

@brutersmom thanks so much. Especially on the ice pack tip. I was clearly doing the exact opposite 🙈🙈. As for the refrigeration. I didnt get that. Its refrigerated and then taken out a few hours in advance? Or its just not refrigerated at all?

Hi! @Rosebessie So, just to add on my experience. My docs do keep it refrigerated since I was told last time that the nurse took it out of the refrigerator two hours before I was coming. Truthfully, I don’t notice the temp and I follow tips provided by @eleanora (thank you sweetie!!) - here they are as she posted:

Over the years I have collected several tips from various nurses which definitely work for me and share them here hoping that they will work for you:

insist that they give you the vials to warm up - even if they tell you they're room temperature that's not the same as body temperature. I put one in each armpit and that works well for me. 😂

stand facing a chair with arms so you can hold on and bend the knee of the side being injected and rest it on the seat to take the weight off of it. (I have found I cannot bend each knee but rather slightly lift the leg getting the shot so not putting weight on it during the shot)

ask the nurse to give you a 3-2-1 countdown so you can cough as she injects

once the injection starts, ask her to "tap" lightly around the needle as this distracts the nerve endings. (This really works!!!)

To end, I bring my own ice bags and keep it on each shot location on my 25 minute ride home. I wear compression gym pants to hold the ice bags in place. Once home, I take some Motrin.

To date, I have not had an issue with my shots afterwards. I am either lucky or these steps work for me. Wishing you the best of luck going forward!!