Faslodex Girls Thread
Comments
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Katy-
You will get two shots each time: one in either side. It would be a good idea for you to read this string from the very beginning, as there are good suggestions from different "recipients". For my part, I shift my weight to one foot, cross the opposite foot lightly behind it, to take the weight fully off that side, and have the injection in the non-weighted side. Switch and repeat.
I understand that some have the shots administered while lying on the table.
You need a nurse who is experienced in administering this shot: the material is thick, and it is stored cold. It must be warmed to room temperature to minimize pain of injection. My own nurse does that in advance without being asked, but others have not. In that case, I have asked to hold the shots (which I tuck carefully under my armpits) to warm them in advance. They must be injected very, very slowly, again to minimize pain.
Some have experienced nerve pain when the shot hit a nerve. Again, get an experienced nurse, and be proactive about asking in advance!
It has been the experience of pretty much everyone that with Faslodex, there is a "loading dose" when you start. You have your first shots on "Day 1", the loading dose shots on "Day 15", and then the regular shots on "Day 30". Thereafter, for me, it's every 28 days like clockwork.
Good luck, Katy! You'll find that this isn't so bad once you get going. It was more mental for me. Now, it's a piece of cake.
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You're absolutely right about the shot schedule; I am already scheduled for the loading dose in two weeks. I wondered about that, since the rest of the schedule in my MDA portal is monthly. The nurses who do my Xgeva shots are fantastic and we have great communication, so no worries there.
I'm actually not worried at all about Faslodex, in fact, quite the opposite...I'm jumping for joy. You have no idea how relieved I am for a couple of reasons. I was supposed to start a different protocol altogether with a drug that I was dreading because of its harsh side effects, but it turned out to be be way too expensive for me to afford, even with Medicare, so Faslodex was the other option. I am just fine with it and hoping for great results on my next scan. Onward through the fog!
Katty
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Keep that great attitude, Katysmith! Excelsior!
Tina
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Hi Joyner,
I still haven't heard back with a booking time for my CT. It's always a bit challenging at this time of year as much of the hospital goes on reduced staffing with no elective procedures booked, etc. While CTs aren't elective, I'm sure there is a ripple effect with vacations. Hopefully I will hear in the next day or two. The cancer agency is usually pretty good about following up. I just hope that I don't have to go and wait for them to slip me in between appointments. That can take hours!
Unfortunately the hip is still giving me heck. I don't want to get ahead of myself but it seems likely this is progression. The question is... what next? I think my preference would be to try to add Ibrance back into the mix (had to stop due to severe anemia).
Katy, Joyner has given you great advice. Here in Canada, I have to pick up my Faslodex from the pharmacist and my GP administers. I usually keep it cold until the last moment (just in case there is a delay in my appointment) and then warm the syringes by placing them in my armpits, alternating twirling each between my hands to try to get the viscous liquid to mix. The stork pose works well for me! My GP was a bit quick at first but is getting better about administering slowly.
Happy Tuesday everyone. It's going to be a warm day here. Pat
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hello,
I’ve just found this thread on falsadex desperate to get a good night’s sleep. I’ve been taking the injections for about a year and the joint pain has become unbearable.
Any advice?
Thank you. Any help would be much appreciated.
Lynn
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Hi, Lynn. Welcome to BCO.
What have you tried so far for your joints? When I asked my MO, he gave me a referral for physical therapy. Your joints need to move, or they will "freeze." They have to be pushed, a little bit beyond discomfort, but stopping before actual pain. I do at least an hour of gentle stretches and range of motion movements a day (I'm a couch potato after work, and I watch a LOT of television. That's when I do my exercises.)
Acupuncture also helps me, and I have a brace for my thumb joint on my dominant hand. I take a fish oil supplement, and I drink a lot of water. I gave up dairy and cut back on meat and alcohol, and I use medical marijuana as a sleep aid when the pain flares. Finally, and this may be controversial, my doctor agreed to cut my Faslodex dosage to 1 shot a month, as the accepted dosage is the same for everyone, whether we weight 125 or 250. Since I'm closer to the first number, he said he thought it would be enough.
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Oh man, I had my first shots 7/15 and didjust fine....had my loading dose the other day and boy is my butt sore afterward....hoping this will improve once I'm getting these once a month only. The nurses were great both times. The meds were warm and they injected 1 minute with each shot
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Hi ladies!
My mom had her 3rd shot an so far so good! She accidentally found another very kind nurse who literally gave her absolutely painless shot twice already. I am afraid even to say it, considering things I read before she started about painfulness and soreness etc.
My question today is about hot flashes and sweating, I apologise in advance for repeating, because I'm sure this has been discussed in the previous pages.
Does anyone found something to lessen this she feels very hot sometimes and it's not quite pleasant felling.
Rainbow
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hello!
Thanks for writing! I’m very active and it’s getting worse. I just started a accupuncture and it seems to feel a little better. Also I’m getting X-rays bc my doc thinks it may be Petellofemoral pain syndrome, knee cap alignment issue. I was asked to stop my yoga and Pilates, not happy about that, and start PT on Aug 14th. The reason being, the doc wants to strengthen my core, hips and legs. Back I also have back issues, he feels I’m using the muscles in my back and legs incorrectly.
My knees feel a bit better but kill me in the middle of the night. I’m constantly dehydrated so the more water I drink the better. I’ll see if all these things work to improve my quality of life. I’m also going to try swimming in the meantime.
Lynn
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Rainbowlight, I just had my first injections on Friday, and I barely felt the needle going in and felt nothing after that. Thank gawd for my nicely padded keister! The nurse already had the syringes warming wrapped in a towel in their blanket warmer for me, and she injected nice and slow. Those MDA nurses are all so skilled, so good, and so nice. I haven't had any tenderness or adverse reactions so far. May it continue!
Lynzer, hope the acupuncture and swimming give you the relief you need!
Best wishes all, onward through the fog!
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Great new use for those wonderful warm blankets. Grand invention by someone who obviously understands comfort. I'll let my nurse in on that next trip. My doctor has so many nurses working at his clinic I seldom get the same one but I'll try and find out who the "head knocker" might be and let her in on it.
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I've just skipped over from the 'ibrance thread' as there was a lot of chat about faslodex and painful injection sites . i have had 18 months of injections and only one very painful experience [ with a different nurse, who administered it far too fast for my liking ,despite requests to slow down it was hurting.]. my regular onc. nurse 'warms' the injection . i lie on my side, on a raised hospital bed, she sits on a chair and then takes about 8 minutes injecting each side . i know because we timed it last time i had my injections , [after someone on the other forum said it was done slowly in less than a minute!]. i know not all nurses have that amount of time with each patient, but ask how long you have for your appointment and then ask them to go as slowww as possible .my nurse said has only given the injection in under a minute when the recipient had parkinsons disease and shook. massaging the site does not work for me, but i often go for a walk around a shopping mall as a 'treat' afterwards. i am unaware of the injection site unless i touch/ bump it by mistake. 2 days later even that discomfort has almost disappeared. i wish you all the best .
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Hey all! haven't been here for awhile, but have had Faslodex shots for a year. The nurse administering the shot is definitely is the difference between pain and no pain. I didn't really know what people were talking about when they said they had pain at injection site, I was just lucky the first few months. I had a new nurse (brand new) give me the shots and the pain that afternoon and night was unbelievable!! I now give the nurse a rundown on warming up and slow injection! My usual side effects are: sleep interruption - first week after shots I wake every hour-2nd week after shots, every 2-3 hours-3rd week I get 4-5 hours straight sleep and the last week I sleep about 6 hours straight and ALWAYS 2 nights before my next shots is normal 7 hours sleep. This has been the pattern since day one! I'm wondering if i've now turned into a habit created by myself. I have zopiclone to take if I've been crabby 3 or 4 days in a row, but don't want to depend on them. More often I take valerian root 500 mg, which works not too bad. I get fresh air, walk every day, try to stay normal and don't dare have a nap unless i really need. They other bother I have is pain in the balls of my feet?? Joint pain and nausea sometimes too. Other than that, I still would 100% rather have faslodex than chemo and it's still working. Last CT showed no new spots on spine and some looked like they were fading; the technician said they were a lot lighter in colour. So, I will put up with the pain and insomnia because I'm in my eighth year of stage iv and doing pretty good!! I wouldn't mind hearing if anyone else has any thoughts on the foot pain or insomnia.
💛💛💛💛
Be kind to yourselves!!
Tsu (Sue)
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Hi Sue!
Good info, very good and encouraging info in your post. My mother is a beginner in faslodex (only first 3 injections, the loading dose) and I really hope it will stop her progression (bone mets).
On another subject, does faslodex helped to stop anaemia (low haemoglobin from going down further) for anyone.She has this problem and the onco doc said not to take B12 or anything else for that.To wait for faslodex to start working.
Any thoughts on that would be very helpful
Rainbow
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shots today, heading into month 3! The injections were easy, no swelling yet. I'll be interested to see if I wake up with conjunctivitis again tomorrow like the last two injections. My only problem today was the pharmacy losing the prescription so the whole thing took 4.5 hours.
Scans in five weeks, keep your fingers crossed
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Dear Fanny Pack,
Results of last week's CT and bone scans: No active mets in lungs. No mets in other organs. Nothing in bones but arthritis.
At this time in 2011 I thought my life might end. But then I got another year, and a year after that and many more.
Long may we ride!
Tina
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HOORAY, Tina!!!
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Tina, wonderful, wonderful news!! Will you continue on Faslodex?
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Cling,
Why not? I see my onc in a few weeks and am certain he'll keep me on Faslodex.
Your friend, the Vintage Pincushion
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CONGRATULATIONS Tina!!!!
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Tina, That is great news. WOOHOO! I am doing the happy dance for you.
Hugs and prayers from, Lynne
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Great news Tina
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What great news!!! Congratulations!
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Congratulations Tina. What awesome results from Faslodex!
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I got a little cocky after my first round of injections and the following loading dose because I didn't have any negative reactions, but hoo boy, did I have a night of nausea and chills after my regular injections Friday. Next time, I'll take some Ondesentron the day of the shots. I was fine during the day yesterday, though, and had a light lunch. Hope everyone is doing well!
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Katy, have you tried the Claratin/loratadine 2 days before shot, day of, and for 2 days after? It has helped many of us
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I used Claritin the first round, but I always heard that was for aches and pains, not nausea. I used Claritin when I had Neulasta patches, but the explanation as to why they helped was that Neulasta stimulated histamines, so the Claritin was used to suppress them. Does Faslodex also stimulate histamines?
Nonetheless, I will try them again next go round along with my Ondasetron. Thanks!
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All of what you said makes sense. I never had nausea with the Faslodex and Xgeva so no experience or good input to offer. May be worth a try, though. My onc's nurse practitioner said that they recommend the Claratin with Neulasta, but she hadn't heard about it for Faslodex. She made a note to suggest it to others. I guess that we're all learning together what does and doesn't work. Good luck with the next shots, Katty!
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Thanks, Lynn! I tend to be informed, but way too casual putting things into practice.
Next time, I'll do the Claritin again and front-load some Ondasentron. Evidently, I have to be pro-active about constipation,too, as I was with chemo. Hello prune juice and Senekot!0 -
Hi! Am I the only one who gets the injections in "stereo"?? Two nurses (both named Wendy!) - one on either side - I lean over and put my weight on the counter, they count down 3-2-1-poke, and there you go. My cancer center is attached to the hospital, so I park way out in the visitor lot and through the hospital, so I get a good walk both before and after the shots. Not too uncomfortable; but I sure notice if I've forgotten to take claritin before. I've had 4 rounds so far - 3 months plus the loading dose. Had my first CT last week; the new RO says small progression, so that's a "win". I was hoping for no progression, even shrinkage - so I don't feel like a win, but I'll see my MO this week and wait to see what he says.
Kathy
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