Faslodex Girls Thread
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The manufacturer's instructions say
“FASLODEX 500 mg should be administered intramuscularly into the buttocks (gluteal area) slowly (1 - 2 minutes per injection) as two 5 mL injections, one in each buttock..."An article Best Practices for IM Injection of Fulvestrant also says gluteal, and says the ventrogluteal site is safer as it avoids the area with the sciatic nerve. But not all nurses are trained/comfortable with this site:
https://voice.ons.org/conferences/best-practices-for-im-injection-of-fulvestrant
An article in EPMonthly about intramuscular injections generally mentions buttock, thighs, and shoulder. But not stomach.
“The ventrogluteal site, rectus femoris and vastus lateralis location are the preferred location for large volume deep muscle IM injections. These injection locations allow for a high degree of safety, reliability and accessibility when a patient is lying supine, prone or in side lying position. The sites can support large volumes from 2 to 5mL and absorb quickly into the bloodstream.“
I was shocked when a nurse asked if I wanted buttocks or stomach. I can't imagine that working, having it in the abdomen.
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Grannax
That is great news, I have wondered why they don’t start with just Falsodex first and then add the CD4K inhibitors like Ibrance if there isn’t improvement. I had to start both in Jan.
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Shetlandpony, thanks for the good info. I didn't know if I was missing something or not. Since it it recommended into muscle, I'll just stick with glutes.
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“Stick with glutes” Pun intended?
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Karen, my MO said we coukd knock it out fast if we use the CD4K inhibitor too and then maintain with just faslodex and then if tumor markers rise add it back in.
I suppose they do what makes sense to them. Lots of options.
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spicedlife- Where is your pain? Back? Sciatica? Early in my Fas career one of the nurses at my cancer center hit a nerve that caused sciatic pain for me for about a year. It did go away eventually. That is one of the advantages of getting it in the hip rather than the butt, no nerves there. Be sure to read the article Tina2 posted (maybe take a copy with you next time you get shots?) and Shetland's comments above. Hope you feel better soon.
nopink2019- Never heard of getting Fas in the stomach. I would steer clear of that nurse, scary!
grannax- Woohoo on your great scan! Hope you are celebrating.
Shetland- How is the Summit trial going for you? I (vaguely) remember your comments when I was asking about being HER2- but having the ERBB mutation. How long have you been on the trial and how are you finding this combo in terms of se's? Wishing you well.
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Hi, jobur! How are you doing now? I looked at your last few posts on BCO and saw you had trouble with nausea and vomiting on Piqray and some wonky labs.
To answer your questions, I have been on the SUMMIT trial six weeks. It feels like six months. Some of that time, in the first weeks, I went off the neratinib because I had nausea, vomiting, and grade 2/3 diarrhea; became bedridden; and had to go to the ER for fluids (at leftfoot's nudge via PM). If I had known more, or frankly if the trial nurse had been properly looking out for me, it would not have gotten so bad. But anyway, on my third try, I insisted on re-starting with half the dose the trial designated, and my onc prescribed a new anti-D med and a different nurse. For a while I used both zofran and a scopolamine patch. I have now successfully moved up to two-thirds dose and use budesonide, Imodium occasionally, and zofran. Will probably drop the zofran soon. So now I feel pretty good, and it has been worth persisting because I just got labs that show both tumor markers have dropped very low. My onc says this looks spectacular! Scan in a couple weeks.
SUMMIT Basket Trial: Faslodex, Herceptin, and neratinib (Nerlynx) for Her2 mutated mbc
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Grannax2, I responded to your good news on another thread, but there’s no harm in saying Congratualtions again! Isn’ it nice to know those darn shots did some good?
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Absolutely, Shetland! 💞
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Shetland, Sounds like you have had a rough time on this trial. So sorry to hear this, but hopefully the new meds, reduced dose and new nurse will keep you feeling "pretty good" or better. So the neratinib seems to have been the culprit behind most of your issues? After all that fun I'm happy to hear your tumor markers have dropped so much. Looking forward to hearing good news from your scan. I had a rough month or 2 with GI issues and pancreatitis but am now back on a reduced dose of Piqray and feeling pretty good too.
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I’m so relieved to hear you are doing better, jobur . Yikes, pancreatitis and GI issues. Yes, neratinib was the culprit. Yay for dose reductions.
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@ Jobur, turns out that a fragment of the last disc in my spine had a fragment that broke off and was pressing on the nerves.
Neurosurgeon got me referred to a pain and wellness Dr who agreed to give me an injection into that disc or to my spine, not sure. I am so much better!
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Tomorrow I will get my Faslodex injections. I haven't been on the chemotherapy floor in a month. Imagine the changes I wil see. Huge UTSW in Dallas is usually filled with patients and staff. It will feel so strange to experience no traffic, easy parking, few patients and staff. 💞
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GrannaX, I'm also getting my Faslodex shots tomorrow, over at Presby. I've been to the cancer center twice since all this began. It is surreal. An oncologist in mask and gown greets you at the entrance for triage. They give you a sticker to wear to show that your presence on campus has been approved.
When I go, I keep hand sanitizer in my pocket, wear surgical gloves and a mask, and wash my hands about a dozen times while I'm on campus. I put a slow-dissolving lozenge in my mouth before I get out of the car, to keep my throat moist, and I take a thermos of hot tea to sip as soon as I get back in my car (was told this washes pathogens off the throat membranes and down into stomach acid which kills them). When I get home, I strip in the laundry room. I wear my oldest Skechers shoes because I don't care as much about laundering them aggressively. Extra detergent and second rinse. Then I take a shower and wash my hair. And then I collapse. LOL.
I'll be thinking about you tomorrow. Sore hineys need support. HAHA.
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I was surprised to see more patients chemo waiting room busier than I expected. On the main floor entrance they took my temp and asked questions. On the second floor more questions. Everything was normal after that. Except everyone had on masks and gloves. There was hardly any traffic. 💞
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I had my first Faslodex shot at the hospital on March 25th. The nurse screeners at the door had the full masks and gowns on but they did not take temperatures, just asked screening questions, and my father who had come with me was allowed no further but had to wait in the car.
However, after that, the nurse who gave me my shot had no gown, and no mask. I forget if she wore gloves or not but she was simply in her street clothes. I'm sure things have changed by now!
I will be having my second Faslodex shot from a visiting nurse on Wednesday. I am just dreading it. Did anyone else who has lymphedema notice your lymphedema got worse after the shot? In general my entire body was sore and uncomfortable for about two days after the shot. The general body soreness has abated but the lymphedema arm and one buttock area are both still quite sore, especially when I do some mild yoga type stretches that stretch the gluteal area.
They are leaving everything up to me! Scheduling the shot, ordering the drug, scheduling the nurse! I'm more than a little anxious that it is all being left up to me---so easy to make a mistake esp. given I am on hydromorphone, fuzzy-headed. They didn't even do the transfer of the prescription from the cancer center pharmacy to my local pharmacy. I feel like the cancer center nurse should be doing all this. I'm also very scared that the visiting nurse could get exposure to the virus and then come in my house and contaminate it. They assured me they wear a mask, (but no gown.) I am going to ask the nurse to wash his hands before he does anything else. This is all just so scary and dark.
Masks are impossible to purchase where I live, except I see they are on Amazon. But many comments about questionable quality.
Also I am having to pay out-of-pocket for the first three shots. I qualified for something called "Compassionate Care" for the drug company to pay for it, but they were out of funding for our region for the month of April. I need to check back with the drug access coordinator later this month. I need to call her, ---like why couldn't she call me? That's what she is getting paid for.
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Hi Amica,
It all sounds okay to me. You should have three loading doses, two weeks apart and then go to monthly from then on. I was also very achy after the first couple of doses but that went away. The butt soreness? Well, that goes with the territory I’m afraid.
Here in BC, I can’t have the shots from the Cancer Agency or in the hospital. I need to go to my GP and order the drug monthly through my pharmacy. I’m fortunate in that my extended health care through work covers it.0 -
Sadiesservant,
Hi! Thanks for replying. That makes me feel better. I'm glad for you that it is covered through your work plan. Are you working out of your home? Power to you that you are still working. No way could I be working anymore!
Stay safe & take care,
Amica
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Yes, working from home now since COVID hit. I’ve worked steady since just after my stage IV diagnosis. Sometimes I think I’m crazy. Often I wish I could work a bit less. But most of the time I like my job and am happy to have something that pulls me out of the disease. I also enjoy having enough money coming in that I feel I can spend on what I want. There has to be some perks to having a best before stamp on ones forehead
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Went to my MO's office yesterday for Faslodex and Xgeva injections. I wore a mask and gloves. There was only one other patient in the waiting room because they began staggering appointments. I was asked questions regarding the coronavirus. All the nurses and technicians wore masks and gloves. Had my vitals taken which is normal anyway. I ended up throwing out the gloves because I had to take them off for vitals and blood draw. Got my injections which seemed a little quicker than usual. No visit with the doctor this time (it wasn't scheduled). Used anti-bacterial on my hands, left, got home and stripped, showered and sprayed disinfectant on what couldn't be washed. I'm glad I don't have to go back for another month.
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Do any of you use ice packs on the injection sites after the shot?
I had been doing that but my visiting nurse today said he recommended neither ice pack or heat after the shot since both could interfere with the liquid spreading as it should in the body.
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My nurse at my cancer center gives me ice packs for the one hour drive home -- every time. So yes, I use ice packs.
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BevJen
thanks for your reply! I think my nurse at the hospital had also said I could use ice packs after the shot.
Hope all is going well.
Visiting nurse gave me my second shot of the series today. He put his injection a lot more lateral than the first injection I had. I hope he knows what he's doing. Oh well, I'm at their mercy.
take care,
Amica
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After the shots I walk around to circulate the syrup. After that I ride home with ice packs.
Don’t be afraid to ask about the nurse’s experience with giving these injections, maybe discuss the articles posted at the top. I tactfully advocated for myself to get the most experienced nurse to do mine because they are done not at the usual clinic with all the breast cancer patients and nurses who give lots of Faslodex injections, but at a clinic for people enrolled in trials for various cancers. It is a skill that requires training and practice.
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Amica,
I saw your question about Faslodex alone on the liver mets thread and wanted to jump in. We have some similarities in that both of us had a long stretch between initial diagnosis and stage IV. Mine presented as a right pleural effusion (I still have some loculated fluid in my right lung). I was on Faslodex alone for almost two years before we layered on the Verzenio. I did this for a couple of reasons.
First, at the time, Verzenio had just been approved for use in Canada (last summer). I was concerned that if I did not gain access to the drug soon, I would not have an opportunity as I am already considered heavily pre-treated. It took a while to get access - turned down the first time but then Lilly agreed to provide the drug under their compassionate access program. (My extended health has refused to cover the drug cost despite two attempts. Their issue is that I have already received Ibrance and I have already had chemo.)
I also felt it was going to be challenging to get approval as a monotherapy given that it has only recently been introduced. My options for pairing with a hormone blocker are diminishing as I progressed on an AI and had, at that point, already been on Faslodex for 22 months. The median time to progression for Faslodex is 8-9 months so I felt like the clock might be ticking on that therapy.
Finally, while scans have been coming back stable, I worried that things might be starting to go sideways. I had some issues last summer with right arm numbness which turned out to be inflammation in areas of degeneration (age related) but the scans revealed that I have bone mets in my cervical spine and base of my skull - uncommon locations. The tricky bit is that they don't typically scan there so we didn't know if these mets were new or had been there a while. It seemed prudent to layer in Verzenio as it might give me more time on the Faslodex (and works on it's own even if the Faslodex is starting to fail).
Anyway, just wanted to say that it is perfectly fine to be on Faslodex alone. Some have had very long runs on it.
Wishing you all the best.
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Shetland Pony
thanks for the useful advice. The visiting nurse company put me in touch with some kind of manager or higher up, and I did ask this lady if they had a nurse with experience giving Faslodex shots, and she said they had none with that drug specifically, but that all their nurses knew how to give dorsal-gluteal intramuscular injections, that it is a fairly common spot for other drugs too. I spoke to my nurse over the phone the night before and tactfully asked that if he wasn't familar, would he do me a favor and check out some of the info on the internet about giving Faslodex shots. I don't know if he did or not. I can only control so much. I live in a small town and there aren't a lot of choices or resources.
The main thing that bothered me was that he seemed to have been issued one pair of surgical gloves and was using them patient to patient! It is either because of shortage issues or the nursing company is too cheap to give each nurse enough gloves. I have non-medical vinyl gloves, a box of them. I would rather that after washing his hands he used two of my gloves instead of using potentially contaminated gloves. He was using some Z-tracking method where he was pulling the skin as he injected, so his gloves were definitely in contact with my skin pre-injection. How could these visiting nursing companies be so reckless? He came to my house to apply Lidocaine patches and returned two hours later to give the injection, so his chances of actually getting covid exposure to his gloves just in those two intervening hours is pretty low, but still. Our county has "only" 54 covid cases, and the nurse manager also said that to her knowledge their nurses were not visiting any covid patients. I could drive myself nuts fretting about it all,and probably am lol !, but there is only so much I can control.
I find all this covid stuff very difficult. I live with my 96-year-old father, so both of us are high-risk.
stay safe all,
Amica
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Sadiesservant,
thanks for the useful info. I'm glad the Faslodex/Verzenio combo is working for you, and that you did OK evenon Faslodex alone for two years. I'd rather have two years than 8 to 9 months!
I wish I had travelled more before I became sick. Of course I had such a low expectation of the BC ever coming back, but I wasn't working even ten years ago, and I could have been travelling. I don't know what I was waiting for. It would be hard to travel now, I have a lot of problems dealing with my bowels, vacillating between constipation and diarrhea, and sometimes require a rapid retreat to the bathroom. It wouldn't work, even on a plane or train or bus, I'd be pooping my pants!
I'm still paying cash for my Faslodex shots, the compassionate care program ran out of funding for now, but at some point funding should be restored.
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Amica, have you ever tried taking calcium polycarbophil tablets for the diarrhea/constipation? The brand name is FiberCon and is usually found in the laxative section. It acts to hold excess fluid in the colon so works for either condition, as some folks with irritable bowel syndrome have found.
I would also be concerned about the home care nurse’s injection expertise and glove wearing situation. The trouble with coronavirus is that people can spread it before they become symptomatic so even if the manager doesn’t think they have any covid patients, they might!
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vlnprh
thanks for the tips
I agree totally on the visiting nurse. I believe they should be treating any patient as being a potential covirus case, because of all the evidence that it is contagious even when people are asympomatic. As I posted in the Liver Mets section, I am going to ask the nurse to wash his hands both before and after he has put his gloves on. The soap bubbles should kill any virus on the gloves.
I think tomorrow I am going to call my nurse at the hospital, and raise my concerns. I mean this is life and death! I just don't want it to turn into a big hoopla, and their solution to my queries is cancelling my nursing services. It seems to me he is injecting into the gluteus medius if you look at a diagram of the gluteal muscles, closer to the hip bone, whereas the nurse at the hospital did her shot a bit lower, and a bit further away form the hip bone. It's so hard to discuss over the phone, to describe location when you can't see it. And I don't have an i-phone although I could use Skype I suppose (although I've never used it.) . My question to her willl be something like "as long as the nurse is injecting into the gluteal area and he makes sure he is injecting into a muscle, is that OK? Does it matter that he is injecting in a different area than she did originally at the hospital?"
These visiting nurse agencies rake in the profits. The nurses come in for an average of 5 minutes, ask "how are ya doin?", and I'm sure they bill at least $50 for that short visit. They could afford to give each nurse a stack of masks and gloves for the day, which would cost about a buck. It is just plain wrong that they don't.
I have two large lesions in my liver and a cluster of new ones too small to measure. They all cropped up between in the 4 month interval been CTs.
I would much rather go to the hospital for the shot. I mean really, as long as I wear a mask, and they are all taking the appropriate safety measures at the hospital, it would seem safe. It's not like they are letting coronavirus patients walk around the hospital, and the cancer center is in a separate building from the main hospital but attached.
It would kill me (perhaps literally) if they think the Faslodex is not working and it turns out that it was being injected incorrectly all the time! This damn virus! This is just driving me nuts, so anxious. I need some reassurance. I feel like they have left it up to me to me to handle everything, make all these phone calls, try to make sure an inexperienced nurse knows what he's doing.--- for me, it's just too much.
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Amica. I posted some of my modeling pics on liver mets thread.💞
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