Faslodex Girls Thread
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Thanks, SP!! She definitely warmed the shots, had me standing but resting the injected leg up on a chair and told me to relax the muscle- I don't think it took anything like 5-10 minutes though- will ask for slower next time. Definitely more pain in the muscle than a normal injection. However I am amazed at how much lower overall bone pain is being off of the femara, so I think I will like Faslodex just fine!
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I went to MO today and had Faslodex shots. My nurse said that our hospital does not allow the dorsogluteal location at all. EVER. Not allowed. When I got home, I found this with a Google search.
"Before doctors began using the hip as an injection site, they used the dorsogluteal muscles in the buttocks. They tend to avoid using these muscles now because of the potential risk of injury to the sciatic nerve."
From a source called Medical News Today.
My nurse also said they don't keep it cooled anymore so no need to warm.
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I am baffled that nobody at my NCCN cancer center has suggested using the ventrogluteal site. I am also baffled that any nurse at my cancer center would get the site wrong, but I can see from the photo DH took for me that those little bandaids are much higher and to the side than many in the past, definitely in the upper outer quadrant. I am so curious to know how their training is done. I have had very little pain from yesterday's jabs, done by the nurse who correctly answered my question about how she finds the correct location and avoids the sciatic nerve. Of course I also warmed up before, took ibuprofen, and used ice. But I think the most important thing is location location location. I had DH draw a circle around the bandaids with a permanent marker before I removed them. I plan on renewing the marks as they start to fade so they will be a reference point for next time. I will ask for the same nurse, too.
My vials were quite cold. Are you getting brand name or generic, Jaycee? (Mine is brand name.)
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SP, I don't know if it is brand name or not. I can ask next time. I do know my insurance shows it costing $11,000. Where else do we accept such mediocrity?
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Thanks for the information Jaycee. I really think that my back and sciatic nerve issues go back to Faslodex shots above the buttocks. That is when all of my other problems started. After telling my nurse about my sciatic nerve and lower back pain, she said that she could give me the shots in the hip instead to avoid making me hurt any worse. I have been getting my shots in the hips since maybe June or July of last year, I think. When I did PT for these issues the physical therapist showed me with a diagram how hard it would be for the nurse to hit the sciatic nerve given where I was getting the shots above the buttocks so I kind of ruled Faslodex out as the culprit but I wonder if the big glob of the Faslodex pushes on the nerve or something. I tried to contact Astra Zeneca and never heard back. If we do have damage to the sciatic nerve, I wonder if in time, it heals or if it is permanent? I have improved from my worst but it has been very slow and is still affecting daily activities and causes pain.
I will be Googling for that article you cited so that I can show it to my nurses next month.
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I knew it. My nurse told me she got a directive from the hospital corporation to not, under any circumstances, give an IM shot in that lower location (can't remember the name). Lawsuits, lots of them. Not even that old. Permanent damage. I Googled "sciatic nerve damage lawsuits." Many hits.
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Cure-ious, welcome to the Faslodex thread!
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I had a new nurse today. Experienced but new to my clinic. I asked her if she ever has gals that want to lie down on the bed to get their shots. She said "oh no, it hurts more that way. Don't do that" then she went on to relate stories of several patience that kept insisting and kept hurting by having it while lying down. She was able to finally convince them to stand on alternate legs, relaxing each side. Much better. Just thought I'd share this.
There are 12 nurses that work in the infusion room. I don't have a regular nurse. It's never been suggested that I lie down. They always ask if I want 2 nurses to do it at the same time. That does not interest me.
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Gailmary, I agree about the two nurses. I was offered that once, but said no. I felt like either they didn't want to be bothered with two shots or thought they'd convenience me by getting me out quicker, but I'm not that impatient.
Happy to report my jabs went well yesterday.
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I always have both shots at once. One &done, no anxiety. They ask if I can feel one side more than other and that is flag to slow down that one. Easier on me.
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Cripes I get my third set of shots next week already! The first set I had quite a bit of local pain the following couple of days. Next time in, different nurse, she said she had a timer so each shot would last one minute. But, thanks to SHETLAND(!!) when I got some pain mid-way through, I asked her to take a break for 20-30 sec before resuming- they second half of the shot then went in fine and I had no pain lin the following days. No idea if it was the pausing that made the difference, but I am going to ask for them to take a break around the halfway point every time now.
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Cure-ious,
I'm off faslodex for now, but I would constantly communicate with my nurse while getting the shots. I could almost feel when the shot was going to start hurting -- preceded by sort of a burning sensation. Then she slowed it down and all was well. So I guess I had sort of pause in there most times. It's good that you found something that works.
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Oh, Bliss, I never thought of that. I always enjoy seeing the nurses. I go on the quietest day of the week (Fridays) and we always share a few laughs. DH would come with me pre-Covid and he'd tease us both. Always left laughing. Anxiety scale all of 1 for 1 minute. I'd rather get the shots then take pills.
But about both shots at the same time I always figured if the timing wasn't perfect I'd flinch and make it worse, tightening up for the second one. And how can you relax both sides at once if you're standing? And I'd feel it were abit of invasion of my privacy with 2 of them back there! Ha!
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One minute sounds fast to me, Cure-ious. The dosage and administration instructions say "1-2 minutes per injection" but my nurses go more slowly for me. One of them prefers ten minutes, and I won't argue because she does a great job.
I agree about letrozole causing less pain than Faslodex , if we set aside any pain related to the injections themselves. On Fas I do not have the stiffness and achiness I had on letrozole. My onc says it has the fewest side effects of all the anti-estrogens.
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Just chiming in to say that my nurse takes about 5 min. for each side. I've never had a bad reaction except for some tenderness the next day. I used to have two nurses give at the same time (pre-covid); they got the spot located and told me when they were ready, I counted to three and they jabbed. I've had 15 so far,16th coming up next week. I do believe slow is better.
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Well, I am going to be the squeaky wheel, as usual. I read about the one to two minutes before my first shots. Then I observed the first few shots. Hmmm, less than two minutes each time. Slightly over one minute. I had her slow down once. But I want it over with. I don't like the idea of the needle just sitting there. What if I or the nurse flinches/moves suddenly? Plus, my nurse is always in a huge hurry. Not in her interactions directly with me but in general, I can "feel" the room. Things are busy. Best to get done quickly and get out. My objective when at any doctor (except my therapist) is to leave as soon as possible.
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Wow, I'm with you Jaycee. I can't believe 5 minutes for each side! I'm fine with about 1 minute each. They say they couldn't go faster if they wanted cause the stuff is thick and hard to push through.
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Timing on mine are about a minute each. I can't imagine 5 minutes each!
I was dreading the jabs last week when I saw the nurse who "hurt" me a couple treatments ago would be doing them, but everything turned out just fine. She seemed more steady with the shots this time. I swear she twisted the needles that time and that's what hurt me.
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Hi all
Good to find this thread
I always feel exhausted for about 4 days after the injections and get cramping in my back muscles. I don’t know if the back cramps are related or something else ...
My pharmacist does the jabs takes 2 minutes for each one and times herself Left side hurts a bit more than right and the aches set in after 24 hours Wish it was in pill 💊
Wishes to all
Ann
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Have any of you had the SE of frequent urge to urinate and/or urinary incontinence while on Faslodex? Within just a few days of having the injections, I woke up one morning and had to pee so bad that I just lost control. And you would have thought that I drank a gallon of water before I went to bed because there was so much pee. I called the nurse after googling the side effects of Faslodex and they do say that this SE is possible, but the nurse said she'd never heard of patients complaining about this SE. They did a urinalysis to rule out a UTI, but everything was normal. Ever since then I've been dealing with both urgency and incontinence. I have been referred to a urogynecologist and will see them on Monday. Just wondering if anyone has experienced this and what was the recommended treatment and did the treatment work.
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Rosie, I had that happen with my first several XGEVA shots, but hydrating fixed it and it eventually stopped happening. Very annoying
My Faslodex shots take a minute and I have them stop halfway through and pause for 30 sec- I read someone say warm up the butt muscles, so I was just squeezing/releasing my butt cheeks continuously as I sat waiting for the shot, not sure if that helped but it must have increased blood flow back there anyway
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Cure-ious - Thanks for your response. It is affecting my QOL and I hope the doctor can do something to help me even if she says to just make sure I am hydrated. I’ve never been good about keeping hydrated.
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That was me, warming up the glutes. It's an idea that came out of my discussion with the physical therapist. I walk before the shots, and I put warm packs in the back pockets of my jeans.
Rosie, at times I have felt a bit of irritation on urination in the first day or two after the shots, but nothing like you are describing. Is it worse right after the shots? Do you get any rash or irritation at the injection site? I wonder if you are sensitive to the castor oil or something. In that case, extra hydration to flush it out makes sense to me. Or maybe ask about using that red pill that numbs the urinary tract when one has a bladder infection?
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Yes! SP, I think that warming up the muscles is really helpful, thanks!!
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Hi Rosie
Ihas some bladder kidney issues when first diagnosed saw urogolist and kid specialist
Was on Letrozole and this did affect bladder in mornings only
and had UTI a few times
last year Changed to Faslodex and Ribociclib no bladder issues for seven months
Now take cranberry tablet no Uti for three years
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Just got back from the urogynecologist. After looking everything over, she prescribed a low dose of medication for an overactive bladder. Hope it works. I’m tired of peeing all the time. Just seems too coincidental that within 48 hours of taking Faslodex/Zometa/Ibrance that these symptoms started, but I’ll do what they recommend.
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Good morning all. I will be leaving this thread as I'm being taken off Faslodex to start Gemzar chemo next Tuesday. I wish you all continued success and no to low SEs with this treatment.
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Good luck on your new treatment, Bliss58!
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Thanks, Lee!
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Bliss, Hope the new treatment is wildly successful with zero SEs. Thinking of you
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