Faslodex Girls Thread
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Hello ladies,
I had my first injection of Faslodex last Monday. I just had pain in my buttocks for 3 days and a little stomach discomfort. That's all for the moment.
As I was Tamoxifen resistant, likely for lack of CYP2D6 enzyme, I wonder if an enzyme is used to metabolize Faslodex. I can't find any information about it.
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hi all!
I would love some of your thoughts on my situation.
I was on Ibrance/Femera trial for 30 cycles when a liver lesion was discovered. I then went on the BYLIEVE trial but unable to tolerate the alpelisib but allowed to stay on trial receiving fulvestrant. I've had 5 of those now but my MO isn't convinced it's working, but my TM's have dropped from 56 to 51. Not alot I realize & it could just be inflammation or something. I had scans 4 weeks ago which showed a tiny increase in size of liver met, bone mets are stable. I will be rescanned again in another 4 weeks (trial protocol)
My question is, does fulvestrant take a bit of time to work like I/F does? Am I being delusional thinking that this small reduction in TM's might be that it's working? I've been on endrocrine therapy for 10 years now & my MO wonders if my cancer is becoming endo resistant.
thanks, cheers, dee
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Yes, fulvestrant takes some time to work. And when it works, it can work for a long time. See my signature.
Tina
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And I'm hoping to emulate Tina. One year and counting... doing great after Taxol, Ibrance/Arimidex and possibly Xeloda failed.
Pat
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Thank you Tina & Sadiesservant. I appreciate your input. I'm going to try not to worry for four freaking weeks!
cheers, dee
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anyone here have an issue with elevated bilirubin while on Faslodex? Since starting it with Ibrance mine has crept up. Today was 1.0 which is still with in normal range. All my other LFT’s are going down. Any thoughts/experiences?
Jill
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I get Faslodex shots every 4 weeks. Does anyone get them on a less frequent basis. I am tethered to my doctor and labs because of that (cannot be gone more than 4 weeks at a time). Also, the nurses put band aids on the shot injection sites. After I take them off, the site itches for about two days. (I soak the band aids with a rag soaked in warm water.) I am wondering if it's the band aids (adhesive) or the Faslodex. Sometimes the itching wakes me up at night - very uncomfortable.
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Every four weeks is protocol but after the loading doses you can push by two or three days. I have to do this frequently due to statutory holidays and other appointments which can impact the timing. I’ve actually been adding a day to each cycle recently to try to avoid a conflict in April.
I think the itching is the adhesive. I haven’t had that problem. Typically I am very achy, particularly in my hips for a couple of days following the injections.
Pat.
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Sadiesservant: Thanks for the reply. The shot schedule was moved twice this past year to accommodate me for several trips. I was wondering about that on a more permanent and extended basis. I think I have a new plan for the band aids. I am going to bring my own - small round ones - the nurse can put on the shot site instead of the large standard ones they use. The band aids they use at the clinic have industrial adhesive (I think).
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Love the industrial strength band aids! LOL. In terms of a more permanent move... I would be cautious about shifting by more than 3 days. The loading dose was to get the drug up to a point where it would maintain a constant level to effectively ensure that estrogen would be unable to bind with the receptors. I would think that if you go longer than a few days you will need to start with a loading dose again. I think it's a similar situation with Herceptin/Perjeta given discussions on that thread. Faslodex is not covered by the provincial health plan in Canada and I am sure that my insurance company would balk at paying the $1300 extra for a loading dose again.
I hear you about being tethered. Of course, on the upside. it's not chemo!
Good luck.
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Wandering,
Forget bandaids of any shape! Just ask your nurse to use a strip of paper tape over a bit of folded gauze. These things are readily available wherever injections are given. Many people are allergic to adhesives, particularly when applied to tender, always-protected skin.By requesting this simple change, you will be helping the next allergic injectee.
Tina (Veteran Human Pincushion)
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Tina2: I'll give that plan a try. Next appointment is February 13.
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My itchy butt bothers me for a couple weeks each month. I thought it was a castor oil allergy. Gotta remember to try the paper tape on Thursday. Stay tuned.
If its bad i use anti itch cream. Hydrocortisone.
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I’ve been a year and half on faslodex and the first time they used those giant square band aids I was just about in tears trying to peel them off. Tape and gauze since then. Also on the nurses cart of “stuff” they have these little warming packs that they use to warm up a babies heel for an injection. They stay warm long enough to warm the needles up. Armpits and inside the bra work good too 😊0
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I do the armpits.
I also spin the syringe in my hands to try to mix the contents. The liquid is so viscous that, if you're not careful, the interior liquid remains cold. Ahh... the art of being part of the fanny pack!
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gailmary and WANDERING -- after my 2nd Faslodex injection (September 2018), I developed a rash on both butt cheeks. Since then, I have started taking Claritin in the days before and after the shot, and I haven't had any problems since. My MO has me doing it 5 days before and after -- I've read others on here only do it for 2. I also saw an allergist recently who told me it is safe to double the dose of claritin, if needed.
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I've spent the last 2 days either in emergency or driving an hour away in a blizzard to see an opthomologist regarding a bleed in my eye & my sight being almost completely lost. This happened in a matter of moments, as if a switch was flicked. In talking to a friend who was on Faslodex for a long time, she indicated that it is a known SE to get cataracts, she had them in both eyes.
The optho wasn't quite sure what he was seeing (I think he's seeing my eye mets which I told him about, I think he didn't hear) He is sending me back to the specialist optho in Vancouver, but I can't get there for a few days. The optho here said it wasn't an emergency but was urgent.
Anyone else?? thanks GG
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hello ladies - I’ve been in the faslodex ibrance combination for 3 months now and lately I have been experiencing terrible pain in the bones of both my hands and also in the feet. Doc has given me strong dose of Aleve ( Naproxen) but that doesn’t help that much. I’m getting massages done and they provide temporary relief. Has anyone else experienced this? What can I do to alleviate the pain?
Thanks, much love
Priya
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Utropia: I have been on Faslodex for 2-1/2 years and Ibrance for 8 months. I have not had any of the issues you have had. However, I have lots of padding in the Faslodex shot area. This may sound a bit weird but since the needles for the shots are so big and long, maybe the injections are hitting a nerve that is effecting your pain - i.e. acupuncture. Might be worth looking into. Best wishes.
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Hi Fanny Pack,
Quick question, have any of you suffered from fatigue while on Faslodex? I have been on it for 14 months now and have found, over the last four months or so, that I am very fatigued. By the end of the work day I am completely spent. For years I have had the same schedule, bed at 10:00 up at 5:30, but now I find I am going to bed earlier and earlier and am having a hard time getting up in the morning. My body seems to need 8 1/2 hours of sleep which, with the time I spend awake through the night, translates to about 9 1/2 to 10 hours in bed. Yeesh!
I have some other stuff going on but am trying to sort through it all. Any insight you can provide would be helpful. Thanks!
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Sadiesservant! What a day for that info! I’ve been 16 months on faslodex and the last 2 months I have been exhausted, dizzy, weak and no stamina. It’s a fight to stay awake past 7 pm. I spend my evenings half awake/asleep. Never see the end of any show on tv, so I pvr everything and research the next day-ughhh. Up and down the stairs is so hard sometimes too. I saw the Oncologist today and when she asked how I was, I told her the same as last month -fatigued!! She checked my bloodwork from today and everything looked normal, vitals good too. So she skipped today’s shots and is giving me a month to recoup. I have my fingers crossed. She thinks that after so many months fatigue for sure can set in for some people. So...tell your doc, maybe you also need a break too. Good luck and let’s be kind to ourselves 💙💙💙0
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Sadiesservant! What a day for that info! I've been 16 months on faslodex and the last 2 months I have been exhausted, dizzy, weak and no stamina. It's a fight to stay awake past 7 pm. I spend my evenings half awake/asleep. Never see the end of any show on tv, so I pvr everything and rewatch thenext day-ughhh. Up and down the stairs is so hard sometimes too. I saw the Oncologist today and when she asked how I was, I told her the same as last month -fatigued!! She checked my bloodwork from today and everything looked normal, vitals good too. So she skipped today's shots and is giving me a month to recoup. I have my fingers crossed. She thinks that after so many months fatigue for sure can set in for some people. So...tell your doc, maybe you also need a break too. Good luck and let's be kind to ourselves 💙💙💙
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Thanks Tsu. It's a relief to hear I'm not alone. The last dog walk of the day has been such a struggle for the last month or more. The only thing that keeps me from falling asleep in front of the TV is the fact that I currently don't have a comfy couch. (I'm doing some renos and hope to rectify that soon.) I am sure once a new sofa is in place I'll be snoozing as soon as I sit down.
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Hi,
My mom had issues with high bilirubin ,she had to miss the third dose coz of it and waited till bilirubin normalized.her highest bilirubin was 1.9.however touch wood now her bilirubin has normalized,could be her liver has got accustomed to metabolize it.she has had 3 doses in a row and now no issues with bilirubin.touch wood.
Rgds
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A report and an mportant question for vintage Fanny Pack members:
As many of you know, I have been on hiatus from Faslodex since October. I'm reporting to you that, as of about two months ago, I began to notice that my lower back pain has eased up considerably. Finally! I no longer feel that something is preventing my moving normally and causing pain.
I am scheduled to return to my oncologist in April. Shall I ask for a continuing reprieve or have I pushed my luck far enough?
Tina
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Hello! New to the fanny pack, was diagnosed with a recurrence in my ribs (both sides) in February. I'm having a lot of site pain from my first faslodex injection on Wednesday. I can see already a handful of ways that might help it go better next time. Thanks! Can anyone weigh in on the dorsogluteal vs ventrogluteal sites?
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Hi Tina2! I am in the same boat, ugh! I was weak, lots of pain that brought me to tears. I missed February and March needles and today is the first day I woke up with only mild pain in neck. I see Onc April 1-if If pain gets worse again not sure what to do. I was thinking about asking for CT before deciding to go back on them
(I thought these shots were supposed to be easier on your body) if CT shows more bone mets, I will go back on them if not I'll push it another month or 2. The last 2 months I have been without sleep and lying down a lot. It was the only time the pain subsided. Sometimes pain was so bad almost had to run to the bed. So... talk to your Oncologist, maybe a CT will decide for you. GOOD LUCK!
As always, be kind to yourselves 💛💛
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Tina, I noticed the same thing with lower back pain disappearing after moving on from Fas to A/A. I had always assumed this pain was from mets, but had it even when I was NEAD. Low back pain is a listed se of Fas, but I never put the two together. As far as whether to go back on tx is April, that is a tough one. After all the time you have had on Fas without progression, I would be very tempted to stay off tx and continue to scan regularly, but that's just me. Best of luck whatever you decide.
Hi Jenny, welcome to the pack, but sorry you have to be here. The shots were never painless for me, I always had what felt like some muscles for 3 to 4 days afterward. It took some getting used to but was a very effective tx for me. Regarding dorsogluteal vs ventrogluteal, my clinic switched from dorsogluteal to ventrogluteal early in 2018 for a couple of reasons, the first being less chance of hitting a nerve and a better chance of making it through excessive fat in the fanny to make sure the Fas gets into the muscle. Many ladies in my neck of the woods are on the heavy side. When I was getting my shots in the dorsogluteal site, I did have one instance of them hitting a nerve. The pain and numbness took almost a year to subside. Remember to be sure the nurse warms the shots first and goes SLOOOOOW.
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Tsu,
How long had you been on Faslodex before your recent break?
Tina
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Hey, I was on for 18 months and it was working, but by January 2019, Everything went for a shit😡 I had excruciating pain in my tailbone for 2 days, then it just disappeared. After that I never new which part of my body was going to have pain. Couple of days thighs-never came back. The last 3 days was my elbows. But today none anywhere for the first time since December, My scans show nothing new and if there was I don't think it would wonder around different parts of my body like that. These weren't just aches-all of it was full blown pain. Hurt my elbow to even push the buttons on the remote. But today is much better and hope for a good tomorrow too. My last scan was February, I’ll ask for one when I see her in April. Good Luck
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