Faslodex Girls Thread
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Thanks, lwrite!
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Bliss,
The Fanny Pack will miss you! Wishing you an easy, successful experience with gemzar.
Tina
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Thanks, Tina. Good chance I'll see y'all elsewhere on the boards.
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Fellow Fannies,
Today's Faslodex injections are hurting for the first time in a long time. Plus there's a sore lump the size of a pigeon's egg on the left and one the size of a hen's egg on the right. Why? My lovely young nurse of many months is accomplished at giving these shots. She always applies an ice pack and numbing spray, and takes her time injecting them. Apparently she had a tough time getting through the scar tissue, so that probably explains it.
I've done so well with cancer, I shouldn't complain, but I am so sick of being in pain from arthritis in my lower back and other places that anything else just adds insult to injury. I've been in PT for a month, but it's not helping. In fact, it seems to cause more pain.
Thanks for the opportunity to whine.
Frustrated Fanny,
Tina
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I have mets to the spine and I am on Faslodex and Zometa only. My Onco tried Ibrance and Verzenio and on both, I got a full-body rash with huge blisters. He said if 2 brands CDK's will do this all will do this. I have done well with just Faslodex and Zometa. Is there anyone out there that has mets and just taking those two? I need some reassurance that you are doing well without a CDK med.
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Deamo,
When I took a break from Faslodex last year my lung mets woke up, so my oncologist added Ibrance. I developed pneumontitis which was most unpleasant. My onc was then going to try Verzenio until he learned that any of the CDK inhibitors would have the same effect on me. I am now on Faslodex only (with a hit of Prolia every six months) and doing well.
Tina
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Tina, I can relate. You said, "I shouldn't complain, but I am so sick of being in pain from arthritis in my lower back and other places that anything else just adds insult to injury." On the contrary, I think you have a right to complain. We go through so much, and when you add it all up it just makes you say REALLY? Now this? I feel like I am constantly fighting for my quality of life. I don't even use the fight analogy much when it comes to treating cancer, but it rings truer when I think about how much problem-solving and self-advocacy I do in order to enjoy my life as much as possible while living with cancer. I do my utmost to avoid or get rid of side effects etc. as much as possible.
I have had a similar experience where I fared well during and after a set of Faslodex injections, thought I had found a great nurse, then the next time had one of those episodes of unusual and long-lasting leg pain. I know your current problem is painful lumps. My point is that I figured out that at least in my case, maybe some of these nurses do not actually know or apply the best knowledge and technique, but just get lucky. Do you think the syrup went into your skin rather than muscle this time?
I seldom get the same nurse for injections at my large cancer center. Part of my new routine is to tell whoever is assigned to me about my three disabling episodes in one year, and how the physical therapist and I concluded that location is key, and that perhaps because of my physique choosing the injection site well is critical for me. Then I ask her to tell me how she avoids the sciatic nerve. It has been so revealing. One nurse said all the right things about the upper outer quadrant. She passed that part of the exam! Another described using her hand and landmarks to measure. She did not pass, because she did not describe making any adjustment for a large hand and a small patient. Another one told me upper but failed to include outer. Fail. A few months ago when A+ nurse gave me shots, I had DH take a photo of my derrière with the little round bandaids still in place. We also circled them with a sharpie, but the marks wash off if they are not renewed enough. So now I just show the nurse the reference photo in my phone as part of our pre-injection talk, and admonish her not to go below my freckle. (Convenient, that freckle.) I also ask how long she takes for each shot. If she says anything less than five minutes per side, we need to talk about that. I also ask her to press on her selected spot and ask me if it is already sore, and if so to shift it a little. Also, when we first enter the room I request warm packs for my fanny, explaining that the PT suggested warming the muscle beforehand. I put them in my back pockets while the nurse enters stuff into the computer. At the same time I have the syringes in a warm blanket. We do not proceed until they are warm enough. After the shots I request ice packs to apply to reduce inflammation, once warm packs and walking have helped circulate the syrup. And I take ibuprofen a half hour before my appointment and about five hours after, again to reduce inflammation. I keep notes in my phone with the nurse's name and how it went, so I can request the best ones, but so far my two favorites have not been there much.
So yes, I am a high-need patient, but a little patience on shot day spares me days or weeks of pain and disability. I always show my nurse respect and gratitude, and tell her what a difference her extra efforts make to me. I accept that some injection site pain on shot day is normal, but am now able to avoid worse problems. I hope my story gives new Faslodex patients some ideas to help avoid pain.
So, Tina, I do not think you are whining, and I hope you can problem-solve this with your caregivers to hopefully avoid this happening again. If the problem is indeed scar tissue, is the ventrogluteal site a possibility?
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Shetland,
Thank you so much for your thoughtful response. I will tell the nurse what occurred (kindly and carefully because she is a sweetheart) and ask her if there's anything to be done. I feel I may have inadvertently tensed up because I, the nurse, and my spouse were chatting up a storm during the injection. Relaxation is not my default mode, so maybe that was the problem.
Regardless, I appreciate your thoughts. All of this does get to be a drag at times.
I will ask about the ventrogluteal site.
Tina
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While we're on the subject, I'd love to hear from anyone who is receiving Faslodex via the ventrogluteal site. Please let me know!
Tina
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faslodex and xgeva for me. Used ibrance first year only cause doc didnt think I needed more. He said he could add it back later if tumor markers went up. But they havent. If I show progression anyway he might switch out the faslodex. Wont talk Bout the possibilities. Tooo many he said. Thought I could go years before needing more and think of all the discoveries in that time.
Gailmary
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Yo, Fanny Pack! I'm going to ask this of you once again.
Is anyone on this forum getting Faslodex injected in the ventrogluteal rather than dorsogluteal site?
Thanks.
Tina
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Tina - I think I get the injection in the ventrogluteal site (had to Google to figure out the difference between the two sites). The nurses aim more towards my hips than my behind.
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TIna, I found a post by cowgal from February 13, in which she says they have switched from "butt" to "hip", so maybe she is getting her shots in the ventrogluteal site.
Regarding terminology, I now make sure the nurses choose sites high and out toward my side. Someone might call it my hip, but it is really the upper outer area of the dorsogluteal site.
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Thanks, RosieRed and Shetland. I've been getting the shots in the upper outer quadrant of my buttocks, which is pretty high up and toward my side, and probably still qualifies as dorsogluteal.
Tina
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Yes. I probably mentioned this already, but I actually have a reference photo in my phone to show the nurse. My DH took it for me when I still had the bandaids in place, on a day I had a particularly knowledgeable and careful nurse choose the correct sites. I tell them there does not seem to be much margin of error for me, so here is what works.
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Hello!
I joined the Fanny pack yesterday.Four rounds of Ibrance did absolutely nothing and more tumors grew during that time.
I read the helpful pointers ( thank you! ) and made sure to warm the syringes before being injected. Two nurses injected in an area which seemed to be higher in the hip.
Thankfully it was not as bad as I had imagined it would be.
💉
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Welcome, Muralsky. Were you on letrozole with the Ibrance? De novo or recurrence? (These are our usual cocktail party questions in the stage iv forum.) 🙄
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Thank you for the welcome.
I need to fill out the specifics of this unwanted journey so that they show with my name.
Just not up to it yet.In short, Original dx in October 2010. ER/PR+ / Her-.
Lumpectomy, Mastectomy, 4 rounds of Taxol chemo and 5 years of Tamoxifen.
Reoccurrence identified at the end of 2020.
1/19/2021, Was put on Ibrance, Anastrozole and Zometa due to widespread reoccurrence in bones. Pet scan early May after 4 cycles of Ibrance revealed new tumors with higher SUV levels than found in earlier scan.CA 27-29 markers were 305 in January. Yesterday's test hit the jackpot with a rating of 2055.
Faslodex and Xgeva started 5/25/21And yes, it is a cocktail party for sure! 🙂
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Tina - Shetland is correct. I believe I am getting the shots in the ventrogluteral spot. I can verify that is the true location next week when I get my monthly shots but it looks pretty close to that. I can not think of any circumstance that I would let them give me another one of those shots in the dorsogluteral spot after the long term pain and damage I have experienced that likely goes back to getting the shots in the dorso location.
Welcome Muralsky. My original diagnosis was in 2010 as well. My recurrence was September 2019 where it had spread to a lymph node and my collarbone. I had already run through all of the aromatase inhibitors on my first time around so they were considered to have failed and I was started on Faslodex. I am also on Ibrance and XGEVA and underwent Taxol and radiation treatment after recurrence. I hope your new drug combination works well for you!
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Hello to all,
I have been on Anastrozole since Dec 2018. Time to change. I started my first Faslodex injection Monday 24th. It went ok. Minnimal soreness on right side on day 2. I believe mine was in the dorso area, although I will ask nurse to confirm.If they all could be like this first one it would be nice ! I will be starting Ibrance 75 mg too.
I wouldl like to visit his thread with updates and to share how things are going with everyone.
Thank you.
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Shetland Pony, I literally laughed and snorted when I read your "cocktail party questions in the stage IV forum" indeed, it is our reality!
Welcome Bootsy and Muralsky to Faslodex. It's good to hear that your first shots went ok! I go in this week for my shot #18 of faslodex. I have only had one shot that was uncomfortable (hit my sciatic nerve I think?). I am also on Ibrance, now 75mg and tolerate both well (all things considered!).
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Thank you for the welcome cowgal and Aprilgirl1!
It was good to hear that these shots have for the most part, been “doable” for many.
I go next week for my second loading dose. I am going to ask why I am only getting faslodex, although it may be that it has already been determined that Ibrance did not work for me. 🙁
At the start of this and before any treatments, my CA 27-29 and 15-3 numbers were in the 300 range.
On May 25th, after round rounds of Ibrance they were both in the 2100 range!
That was a bucket of cold water to the face.Hopefully, they will go down, but I read that it takes time for Faslodex to work.
Bootsie7, seems like we are almost in lockstep with our injections. Hope yours continue to go well also!
Best and brightest to you all
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Just reporting in that my scans showed cancer is stable. Nothing new. Little concerned about new low back pain turns out to be more arthritis and more slightly bulging discs. Monday epidural in neck. Can't wait. Amen.
I inquired about adding ibrance or such and still he doesn't think it's necessary for me. Dx 4.3 yrs ago. Cancer is strongly estrogen receptor positive, grade1. One met, though he suspects I've had several small lesions come and go with treatment.
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I received my first injections about 1 1/2 hour ago. I have been vomiting for the past hour and feel very light headed. I called the nurse who told me that there’s flu bugs going around and didn’t seem too concerned.
Has anybody had this reaction from their first injections.
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Kabuki - I didn’t feel that way from Faslodex, but definitely felt that way due to my first Zometa infusion which I got at the same time as my first Faslodex shots. Totally felt like I had the flu for 24 hours. Nurse sent a prescription for Zofran to combat the nausea.
Hope you feel better soon.
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Thanks for your reply, RosieRed. I took a Zoltan and feel better. The information sheet lists nausea and vomiting on the first dose which usually subsides when the body gets used to the drug.
The Pet scan showed a bone met so I guess I’ll be taking Zometa or something similar.
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hi ladies , today is my first faslodex injection. I used to be on zolidex / letrezole/verzenio. Now I am on faslodex and afinitor. Any crazy SE for faslodex injections. I should have taken an Advil before injections. Thank you in ad
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I have had three faslodex injections -- #4 this Thursday. I haven't had any crazy side effects. Obviously, there's some soreness at the injection site. I've also noticed some hot flashes, but they aren't too bad.
The first shot I really struggled with, but it was because I had just gotten my Stage IV diagnosis, and I was given it in the same infusion center I had had chemo three years ago. I was really shaken being back there and that took me by surprise. I got those first shots in tears; however, since then it's been pretty smooth and not as bad as I thought.
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Shot #4 today. Definitely more sore than normal, but hopefully will be better in a day or two.
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I’ve had good luck with the shots by 1) warming the “syrup” beforehand (the nurse may do this or you can put it under your armpit 🤷🏻♀️) 2) have the nurse inject very slowly.. 1 minute per shot. I even have her stop for 30 secs during each injection 3) walk around the parking lot for a few minutes afterwards & 4) rub the injection sites. I’ve also heard of people using heating pads after. Hope they get easier!!
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