I've been on fulvestrant for about 6 and a half years. I shouldn't have any complaints because the drug is working and I'm doing fine. However, the sheer number of injections into my glute muscles is starting to become a problem. I have so much scar tissue from the lumps that have formed over the years. Last week, a nurse tried to inject me on my right side, and she got the needle in, but tissue had become so dense that she couldn't push the medicine into me. We gave up.
Has this happened to anyone? I would like to switch to an oral SERD, but so far I am not eligible.
Written by
lambee9
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I was on Faslodex for exactly 100 cycles. YES... We often had problems getting that viscous serum into my glutes. My behind was always tender and sore. The lumps even showed up on the Pet Scans. As long as It's working, I'd stay on it. You never can tell if the next treatment is going to be as effective... Best of Luck!
Doubtful it will improve... but your next treatment will probably be a single oral drug that combines the injection in with another oral drug, rendering the injection unnecessary! Just an odd incident... my nurse tried so hard to push the needle in that it bent the needle! She got bruises on her palms frequently, poor thing.
I’m curious with Faslodex - has anyone here asked about injections in the vastus lateralis and rectus femoris (thigh muscles)? These two muscle groups would be considered appropriate for larger volume injections (ie 5ml faslodex shots), but I’ve never heard of anything other than glut being used. Or could 5ml be divided up into 4 x 2.5ml shots to rotate sites?
I looked into this a lot when I was getting injections. I am sorry I don't know all the muscle names so I will have to use location. American nurses in particular tend to give them in the butt (glutes). Consulting with the NP in my oncologist's practice and reading nursing journals, I learned they should be given in the hip I don't know if that is a separate muscle or a different part of the glute. Higher and more to the side. I did not hear about the thigh as a possibility. It might be more painful and disruptive. In the glutes as nurses are giving them risks hitting the sciatic nerve. It is less painful and easier to get them in the hip.
yes dorsoguteal (butt) is the one to avoid due to risk of sciatic nerve involvement). Ventrogluteal is more lateral upper ‘hip’ that you’re describing.
oh my god - that sounds so painful. I remember my own lumpy stomach after 2 mths of daily heparin and long term denosumab and that’s just a tiny needle with thin fluid. So sorry. You’d think they could tweak the drug formulation to make it less viscous. . My denosumab now comes as a preloaded syringe rather than drawing it up myself and losing half of it as it’s under vacuum pressure. Out of pure nosiness, why were you and others started on fulvestrant rather than AIs (which come with their own problems). My joints are so bad that I was considering asking for a switch to FV but not sure now after reading your experience. Out of all the horrible things we endure as treatments (chemo, seromas, radio etc etc) am not sure I could do that. So you have my greatest respect and hope all the tips help.
I had immobilizing joint pain on AIs. Fulvestrant is just 4 minutes of pain once a month. And if you warm it and it is given in the right place (ventrogluteal, as MSwife says, and Dragon Fly provides a handy illustration), it is not so bad and there's no long term pain
It really wasn't bad for a long time. Some lumps that eventually go down. But this was the first time the tissue refused to accept the medicine! It's not really that bad at all. And i don't really have any side effects. Unfortunately AIs also caused me crippling joint pain, like TammyCross.
I was given an AI for 5 years, then 7 years after the finish of that, I had a recurrence... after which I had a double mastectomy, DEIP flap reconstruction, and Eight years of Ibrance, Fulvestrant, and Xgeva. Then when it quit working they started me on Orserdu, which is great lab work wise... but not much on stopping the cancer. So I just had a liver biopsy to determine the best IV chemo to go with next and a fresh new port to pump it in through! Best of luck to you.
You didn't mention whether the fulvestrant had been warmed to rrom temperature bufore adminstering it. This is a very importnat step. It's much more difficult and also more painful for the patient, if the fulvestrant is still cold. The shots should also be administrered slowly for at least 2 minutes on each side. Going too fast also causes more pain. You can also ask to lie on yuour side or stomach, instead of standing up. The muscles are more relaxed and it's less painful this way. I've been getting fulvestrant injections for 2 1/2 years and these are the ways that I've made the shots work for me.
the nurse either warmed mine, or gave me the syringes when I first got there, while we waited on my bloodwork to come back, and I put them in front of each hip between my skin and my slacks... then they were more body temp than room temp. Keep on kicking, Kiddo!
Yes. Not so bad that they couldn’t inject me, but big lumps. I went to a physical therapist who used a heat wand over the lumps and it really helped to break them up. You might need more than one session. Make sure you massage the area after each treatment to try and alleviate future problems.
Find out the generic brand name of fulvestrant that you are getting. Some are better than others. I made a list and tracked symptoms and found some are more tolerable. Eventually I asked for the generic made by Astra Genica at that time. I had no problems with it. It was the best.
I have been getting the Faslodex for 10 yrs, I have scar tissue but the nurses always feel around for a soft spot to give the shots in my buttocks. I've had a Physical Therapist do Cupping on the knots of scar tissue and I use the roller wand(Amazon) plus heat and the knots are less in size. Rubbing on Caster Bean Oil is also helpful.
Size and location of area are taken into consideration by the Radiation Oncologist. Large area in my lung took 15 treatments 3x week, recent mass took only 3 treatments over 2 weeks and I just had a CT yesterday and the size has been cut in half, it can take a few months to see the effect of radiation treatments and there are different types of radiation the Rad Onc can choose from.
Thanks for that info. I’m dealing with sciatic pain from an injection that wasn’t given right! It’s better and I’ve received 2 since Dec. wow that’s amazing!!
Hi Cocoacandy. I take faslodex with Kisqali. I am also on Lupron shots for ovarian suppression and get Xgeva for bone strengthening every 9 months. So far so good. It's been 6 and half years on the same therapy, my first line of therapy. I only had one bone lesion, and thankfully it has been reduced to scar tissue. Good luck with everything!
Hi lambee ,Thank you so much for replying . I only had one bone lesion also . I do get Xgeva shots every 3 months , they were going to be monthly but I didn’t want monthly blood draws . I guess you get those on Kisqali . Great to hear your first line of therapy has worked so well for you . Which scans do you get and how often ? Wishing you continued success with treatments !
Hi again. Oops, i misspoke earlier, i actually get the Xgeva every 6 months. As far as the Kisqali, which is a CDK4/6 inhibitor, yes, they do want to do monthly blood draws. At least in the beginning. I eventually talked them into every 3 months. (I have terrible veins.) As far as scans, I now get a Pet CT every 9 months. In the beginning it was more like every 6 months, but we are feeling a little more confident. Because i still have one natural breast, I also get a yearly mammogram. Wishing you continued success as well!!
Hi Sherri , I also have terrible veins that is why I’m trying to hold off on the CDK4/6 inhibitors . My one lesion on my rib has not shown on the PET/ CT for a long time . I also have lung nodules but not proven to be cancer . It seems they can damage the lungs easily doing a biopsy . The size of those stay stable . I really appreciate your response .
Please do not give up your treatment if it is working for you.
Make sure that the nurse warms up the Fulvestrant and uses plenty of numbing spray. Have it done more in the hip area as opposed to the buttocks. That is actually the newest recommendation for best results. After the shots use a rubber message ball to facilitate more rapid absorption of the viscous medication. My daughter got me a message ball that says Planet Fitness on it and it works wonders. I have been on Fulvestrant for years like you and do not have any rump bumps and no problem sitting post meds.
I hope that these suggestions can give you some relief. Think positively and see what can work for you. Have faith.
I am so happy you have been able to stay on this med for so long, but sorry you are having issues with scar tissue. I hope your nurse can figure out something for the next time. Sending hugs and prayers.
massage massage massage. It’s been a little over 5 years for me. Praise God. I’m lumpy but it’s working. The scar tissue shows up on scans as well. As long as it’s working, I’ll keep getting the massages to help break the tissue up. The sports massage gun with the circle tip works wonders. I hope everything work out for you.
I am sorry to hear this. I have been on fulvestrant for 18 months. I am wondering if scar therapy might work. I had this for my breast and reconstruction scars and it certainly loosened them up. It was private but I'm not sure how widely available it is. I know massage is supposed to help. My physio has done a little massage and it did seem to reduce the hard patch.
I been on for 3 years also has small buttock i try lying on heat pad every night also massage with soft ball on the floor will break the bump and buttock will ready for next injection, i bring in hot pack for nurse to warm up medication than i will tight strech pant and bring to roll towl after injectiin will help creat pressure at injection site than i will go home use soft ball to rolls on injection site to prevent huge bump its working than massge to break the bump first 3 days as frequent asi can.
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