Faslodex refrigerated versus non refrigerated

[Ycats277]

First I was switched from the Refrigerated. Faslodex injections for 3 years with no problems , awesome pet scans to non refrigerated. The side effected were so apparent. I felt horrible. Wonder why ? So I asked and complained because I was that uncomfortable 🥵. I’m not a complainer. I was told that the unrefrigerated is less expensive so more money for the office . WHAT ?!!!!! But I felt terrible and was PROMISED THE REFRIGERATED ONE FOR NOW ON . The next time she came in with them under her arms warming them , that always bothered me too , lol . Yuck but whatever . I was fine and relieved , the month I felt fine as usual . The next month the injections were just laying on the counter when I went in room , felt them warm , I questioned her the under arm lady and she said no I warmed them up earlier. I was not sure but took shots and left . I was miserable the next 3 weeks . I called and I made her promise that I was going to get the refrigerated ones and she promised. She also swore that those were also refrigerated, I know they weren’t it’s the same feeling I got with the other shot that was not refrigerated. It’s very distinctive had severe aching from my elbows to my shoulders on both arms that was nonstop no matter what I did. I had severe diarrhea which I did not have for the three years on the refrigerated one, or for that month that they gave me the one refrigerated one after the unrefrigerated one. I know the difference. I was just given the unrefrigerated one two days ago, and I said to her this feel warm she said oh they’ve been out warming up. I feel horrible right now, And I don’t know what to do. Do I leave my oncologist that I love and he was helping me? Also update on the change to Xgeva from zometa , no more teary-eyed at all. They completely went away in three days of being switched off of Samara to Xgeva. I was wondering if the Xgeva what was causing the arm pain but I didn’t have the arm pain that month that I was switched back to the refrigerated one. I just don’t know what to do and I don’t feel good on this unrefrigerated injection also, The injection itself is a different needle I get bruised black and blue and lumpy from the I refrigerated but not the refrigerated. Really painful . Now I feel like crap but I know it’s gonna last three weeks and I’m being lied to and I don’t know what to do. They all lie in that office and they’re mean.

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Stacy, I'm going to give you my phone number on the private message section Call me & I'll answer all your questions. Tomorrow morning? Is that OK? Marjorie

[LadyKatarina]

You have a right to complain! The non-refrigerated fulvestrant contains preservatives. (Faslodex is the brand name--all the others are generic.) I know--I went thru the same thing. One generic is Fresenius, if I remember right. There are other brands that cause injection site problems too. Oodles of companies sell this. My cancer center purchasing dept. just ordered the cheapest! I ended up phoning the cancer center pharmacist myself, and finding out which brands I had gotten on which months--and asked if they could order the one that I had tolerated for me. And they were willing to do that. You can look all the brands up on line and find out their ingredients. We have to do a lot of work to care for ourselves. Best to you!

[Ycats277 in reply to LadyKatarina]

Omg , you gave me awesome info , thank you so very much 🌹❤️

[LadyKatarina in reply to Ycats277]

Happy to share my experience and knowledge I gained! Too bad we all have to reinvent the wheel--and that our oncs are not telling us this stuff. One of my cancer center's IV nurses shared that they had changed generic brands--and that led to my research. Best to you!

[Ntash01]

I just had my second set of shots, one more set of shots to go and then I’ll be getting these monthly. Initially I was so upset having to stop ibrance, but now I’m accepting it is what it is. I was scared, the thought of injections-needle issues, but by the grace of god so far so good. I pray for good things and I’m feeling ok.

I shall definitely request the original after speaking to my BC nurse this week, I know it’s funding but for gods sake…. I’m trying to live a ‘normal life’!!!! Thanks for advice, much appreciated.

[kearnan]

Odd. I am in NY and have gotten the falsodex injections since 2018. They are kept in the refrigerator and they are given to me to put under my arms pits or warm them in my hands for about five minutes until they are warmer. I was told that it hurts more if they are cold from not just the nurses but other patients who get them also. So although kept in the fridge, I always get them (and the other patients) after we have warmed them up. I feel no pain at all with them warm except for the standard lump for a few days but I can sit down immediately. I also have a big butt. Nobody I know gets them cold but maybe it's the way they do at the cancer center I go to.

[Ycats277]

She fakes that she is warming them .