Anyone take fulvestrant for years?

[lambee9]

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.

[chemohawk]

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!

[lambee9 in reply to chemohawk]

Thanks. Yeah, i really don't want to switch. My lumps show up on my Pet scans as well, LOL. Oh well, hopefully next month will go better!

[chemohawk in reply to lambee9]

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.

[lambee9 in reply to chemohawk]

Whoa! Poor nurse!

[TammyCross in reply to lambee9]

It is much easier on the nurse's hands if it is warmed, so it is more fluid.

[MSWife]

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’m asking only, no personal experience.

[TammyCross in reply to MSWife]

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.

[Dragonfly2 in reply to TammyCross]

yes Tammy…this is a pic of the area high on the hip that I get my injection…no more issues with nerves and doesn’t affect sitting.

Injection location

[MettavivorDS in reply to Dragonfly2]

That’s where I get my fulvestrant injections at MGH in Boston.

[MSWife]

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.

[bikebabe]

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.

[TammyCross in reply to bikebabe]

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

[TammyCross in reply to bikebabe]

SERDs, like fulvestrant, operate differently from AIs and are more effective in reducing or blocking estrogen.

[lambee9 in reply to bikebabe]

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.

[chemohawk in reply to bikebabe]

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.

[lambee9 in reply to chemohawk]

Oh wow, I'm so sorry. Wishing you all the best!!!

[MettavivorDS]

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.

[lambee9 in reply to MettavivorDS]

We definitely warmed up the medicine in our hands! Always.

[chemohawk in reply to MettavivorDS]

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!

[diamags]

12 years! I'm sure there's scar tissue, but no problems getting it in.

[Nocillo]

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.

[lambee9 in reply to Nocillo]

Good advice, thanks! Heat wand. Interesting.

[LadyKatarina]

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.

[fancydog]

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.

[lambee9 in reply to fancydog]

Wow, i am so heartened to hear i am in company with the lumps and knots! Thanks for the advice, this is great!

[Cocoacandy in reply to fancydog]

Do you take other treatments with the Faslodex ? I’m at 2 years on just faslodex for MBC . Great to hear it’s still working at 10 years

[fancydog in reply to Cocoacandy]

I am on Faslodex only. Over the years have had single MBC spots that have been radiated and resolved.

[Cocoacandy]

Is faslodex your only treatment ? I am at 2 years on just that

[lambee9 in reply to Cocoacandy]

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!

[Remyan]

Dear lambee,

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.

All my best,

Andrea

[lambee9]

Thank you Andrea!! Great suggestions!

[love2golfwell]

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.