Feeling lonely with Faslodex/Fulvestrant

Hi Missic, I am stage IIIa and after a year of the aromatase inhibitors and the unbearable side effects, I am now on Faslodex. I don’t think there are many of us with stage III using it. My MO said that I am the her onlypatient. She has a huge patient load. The only reason I am on it was that I called my insurance company and told them I needed this because I was not going to take anymore aromatase inhibitors. I was went through all theee aromatase inhibitors and spent most of the year in the orthopedic’s office and physical therapy. I had to switch orthopedics because my first one thought I was crazy. My current one said that as long as I take the aromatase I will be fighting a constant battle with joint pain. I have also noticed that they raised my heart rate. That has gotten back down into the normal range. Thank you for posting. I thought I was the only one too.

I have had 5 shots now by three different nurses. With one nurse, I never have any pain in the injection area but I will have nausea and fatigue. She goes very slowly when injecting. She has injected me three times. The other two times, by the other nurses I have zero nausea but I ended up with knots the size of eggs, bruising and a bit of a rash. No joint pain and my heart rate has gone down too. My MO said they are supposed to come out with a pill form. I had a lump removed from my left breast yesterday. BS said it doesn't look like cancer which is a relief. My bloodwork has been normal. My tumor markers never went above 30 when there was cancer in my body, now they are around 12.

Hello, I’m so glad I joined this community because what you wrote hit home for me. I am er+ Her2- and I did taxol for 9 months and then I took kisqali and fermara which locked my joints. I am now on faslodex and lupron. Yes it does help to warm the faslodex first, my nurses use a heated blanket while I get my port flushed and my lupron shot. I am stage four breast cancer, it spread to my lymph nodes and then to my lungs, liver and abdomen. I was told the faslodex shouldn’t cause joint pain but lately I feel like it’s hard to even get out of bed. My husband reads about all of these drugs but I ask him not to tell me the side effects so if I feel something new I can ask him to verify if I’m just crazy or depressed. I’m so glad to find you ladies Andy I know this letter is just all over but it’s hard to explain everything in a paragraph! I’ve had great pain since being on the Kisqali and fermara and it got better, I can use my thumbs now but my joints are starting to hurt again and I’ve been taking faslodex shots every month for almost a year now way and I’m shrinking my tumors but I can’t enjoy my life like I should be able to. But it’s working so what do I do? The kisqali didn’t not work. And hormone therapy and these shots will be the rest of my life! And I’m scared. I also was recently diagnosed with seizures. My only daughter graduates this year and I want to enjoy it. Every joint in my body aches.

That is great news. I am very curious as to what you learn. I struggle with constipation and stomach issues from the faslodex. I can’t imagine having to be on this for years and years as a preventive. It is better than the aromatase inhibitors. Please keep me posted. I am the only stage 3 at my oncologists office using faslodex. I wonder about long term use.

11 years, that makes me feel so much better. Thank you for sharing. I have been watching my carbs, processed foods for the past two months. Lost 10 pounds. The stomach issue is only for the first few days and not every month. Constipation is ongoing. I can live with it over the awful joint pain from the Aromatase inhibitors. I also have a bit of fatigue the first week. I may need to look into the CBD oil. I take an anti nausea med for a few days. I am so glad you started this thread.

Hi ladies, thanks for welcoming me. I couldn't find any Fasodex/Ibrance threads for non-stage Stage IV.

I literally just took my first Ibrance pill today and its a full dose of 125 mg. However, my oncologist will be monitoring me closely and says i can step down should this have too many side effects. Yesterday, I received the pretty purple zip bag from Pfizer with all kinds of great information about Ibrance. I perused a few pages and put it away. I don't want to read anything that might deter me from taking this treatment.

My first injection wasn't bad at all. The nurse said she does them all the time and she proved that.

Ladies, I am a faithful person so am really, really praying and hoping that this treatment will keep me from having another recurrence or metastasizing. But I refuse to let cancer take another thing from me so I will do my best to not worry about what i can't control.

Again, thanks for welcoming me and have a great weekend!

Cross posted with the Ibrance thread: is anyone on this thread on Medicare? Is Faslodex covered under Medicare Part B because it's administered in a doc's office? Or is it run through the Medicare Part D drug plan? I called Medicare today and they couldn't tell me (believe it or not).

Thanks.

Congrats on the great PET scan! Hope the next is just as good!

Thanks, everyone, for sharing your experience. I'm Stage IV. Ibrance + Femara worked to contain my mets for 18 months, but now I need to try something else. Deciding between Tamoxifen and Faslodex. I appreciate all your posts.