Experiences with Fluvestrant?

Started in April, very few side effects. Make sure solution is warmed up before injection. I have two nurses who stand side by side to give it at the same time. I get hot flashes and right after my urine smells and I feel like I have a UTI but I never do.

Thanks for info

Jody, I was on fluvestrant for 5 years. It does need to be warmed up before the injection, but it also must be given very slowly. Each injection should take 5 minutes. I watched the clock and told them to slow down if I felt any burning or pain. If the nurse does it slowly, it will dissipate before your next treatment. If she doesn't inject it slowly, you will have a lump there for a long time. It will also show up on your scans. I stopped fluvestrant over a year ago and still have 2 lumps slowly dissipating.

I needed this. Just had second shot. In total it was 90 seconds. It is concerning in retrospect. I will mention it next time. No pain. And I was directed to massage areas and walk after to promote dispersion of fluvestrant. Any other side effects? Were you taking anything else in conjunction with these treatments. I appreciate you taking the time to share and respond.

Jody, I have MBC so I was taking Ibrance 100mg and Xgeva, vitamin B, vitamin D3, calcium, folic acid. I've been anemic since I started treatment. I tolerated fluvestrant well, except when I lumps. Now, I'm on Kisqali and exemestane which I expect my Dr to change today because I have ILD Interstitial Lung Disease and CKD Chronic Kidney Disease, both a side effect of Kisqali and both untreatable.

Oh my Virginia I am sorry for what you are going through. On another note I appreciate you sharing with me. Ibrance for 61/2 years. Just spread to omentun. Layer above stomach. I will do a month of fluvestrant. Every 2 weeks. Until biopsy analysis is complete. I am assuming I will find out Aug. 22 appt. Doc said my plan might be to continue with shots or shots with pills, or pills.

I too have MBC

I also have Zomata infusion every 3 months.

I had sore spots and knots that persisted when given in my gluteus. However, if given in a ventral site, I have fewer issues. I also take small hot packs similar to hand warmers and have the nurses put them on the injection sites. I have bladder spasms as if I have chronic UTIs but no infection. I take AZO and probiotics, which really help.

I have MBC also. I had done intravenous chemo I think8 rounds, then went on Ibrance for 5 1/2 years with Zomeda every 3 months and examestane then Anastrole then Ibrance stopped working now we went with Trugap, fluvestrant, Zomeda and Zyrtec I am only on my 6 round and had to lower dosage I have more bad side effects with this one. Can anyone tell me how they felt on Trugap!

Louise I’m on Truqap also. After second round had grade 3 skin rash. Treated with prednisone followed by reduced dosage for 3 weeks. I have just started taking typical 400 mg dosage again. Hoping for the best. Hope you do well.

I am on Fulvestrant Almost 3 years. I had to have a new nurse reprimanded because she would not warm it up and gave it way to fast. You have to be firm with them. Or they won’t listen. Got a new nurse. After reporting the first. Won’t let her give me a shot. She blamed it on being right handed.

For my fulvestrant injections so far I have never had it warmed up. The most recent injections were done more quickly than usual and I was unusually sore for several days. It seemed to dissipate ok. No lumps.

Thanks for sharing. My fulvestrant injections went well yesterday. Very good nurse. She said medicine is brought to room temperature because it’s very thick and easier to inject when not cold. Good luck to you!!

I appreciate this conversation. I recently switched cancer centers. My new doc wants me off aromatase inibitors due to side effects, which are pretty challenging and have continued to fight worse or the antidepressant is no longer working effective. She feels I will feel better o. This med. I hope so.

I was on that for a while sucked was a shot each side. Never knew which side would feel fine and which side would sting and burn. After I started having to take aspirin. One month had a big welt each side for weeks after

I still have lumps that show up on my scans. It's been over a year and half since my last shot.

Jody S, I have been thinking of you. I pray your treatment is going well.

I just started in October. Get my second dose on Tuesday. I feel so much better than I did on Letrozole. I hope it continues.

Hope you do well

Im new to this site, but I thought I'd chime in as my treatments have been very similar. Im 71 as of Oct 15th and was 1st diagnosed in 2021 with breast cancer. So, I've been on this journey for just over 4 years. Lumpectomy in may 2021, followed by 42 radiation sessions, then Ibrance with Anastrozole. By Aug 2022, 1st met showed up on scan - left hip. 10 more radiation sessions. Changed to Verzenio and Tamoxifen. Next PET revealed 2 more mets on my spine (L4, L5). Changed to Kisquali and fluvestrant. Next PET revealed 1 more lesion on the spine (T10). So, I've had progression while on each treatment and kisquali had the worse side effects for me - anemia and extremely low white count as well as kidney function issues.

Sorry, i forgot to mention side effects of fluvestrant. I really hate getting the shots, but warmed and slow are definitely the best. I feel very tired for a few days after injection and my urine has a strong chemical smell and definitely have bladder spasms. Dr. Gave me oxybuitin which helped but had a whole suite of side effects so I had to stop. Other side effects of homone blockers in general, such as stiff joints with pain similar to arthritis but in every joint, especially my hands.

Last treatment of fulvestrant I had 2 nurses inject and will NEVER do that again Apparently the nurse on my right didn’t know what she was doing The pain let alone now have a lump which is still sore Going back to one at a time

Fulvestrant makes my whole body hurt for 3 or 4 days, makes me very weak and has little energy.

Had my second round of shots recently, first round made my sciatic act up. Overall urine smells and I feel alittle like a can have an uti. It really isn't bad, two nurses, they freeze the butt, I don't feel it at all. Side effects are none to mention.