Hi fellow MBC’ers! I am almost at 6 years of monthly Faslodex injections. I typically get both shots at one time.
The last 2 months I’ve had an allergic reaction while receiving the shots. It includes: Blood pressure spike, wheezing, heavy chest, tongue or face stinging. After about 15 minutes my symptoms subside.
Has this ever happened to you?
If so, do they stop Faslodex? Change dose? Please explain if they changed treatment to what drug.
Any insight you can provide would be greatly appreciated.
Thank you!
🙏❤️🙏
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hopenowandtomorrow
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Wow, that's pretty crazy! And sounds very unpleasant. What have the nurses and your doctor said about it? I've never heard of this before. Perhaps it would help if you take a Claritin just a bit before you get them. Personally, if it were me and the antihistamine doesn't work, I'd be nervous about continuing. What if you're reaction gets worse?
That sounds like anaphylaxis except the blood pressure usually drops. You might want to talk to the dr about a pretreatment plan. I would strongly recommend checking with an allergist.
The reason why I’m telling you this is because I have developed anaphylaxis to drugs that I have taken before that didn’t cause a reaction. My condition is called idiopathic mast cell activation syndrome because we never know which drugs are going to turn on me. So, I carry an epi-pen and pretreat before all procedures.
I hope that isn’t true for you. But seeing an allergist is a way to rule that out.
Oh my goodness Merma! Since my “big chemo” in 2006, I have had one reaction after another to meds I’ve taken before. I have had MDs question reactions until I felt it must just be me. I am down to penicillin for antibiotics, and 32 allergies including all contrast dyes, all local anesthesia (which makes dentals tough!), morphine and fentanyl, Fulvestrant put me into drug induced myopathy. It’s gotten to the point where I’m terrified of any new meds.
You actually have given me a name for this mess! THANK YOU!
I hope you don’t have MCAS, but if you do, there seems to be only a few researchers and experts. In Los Angeles, Dr.Cindy Xi doesn’t accept new patients, but her associate, Dr. Haderi, does. Research is being done at The Mastocytosis Center at Brigham ands Women’s Center in Boston. Also, I think there are individual drs in New York and other places. HealthUnlocked has a patient group based in Great Britain you can sign up for. There are a ton of blood tests and allergy testing you have to go through to get diagnosed. But even those aren’t always accurate. So they will treat as if you have it.
Thank you so much Merma! I’m in North Carolina and stuck with only one provider network covered by insurance. My access to any other facilities would be completely out of pocket 🤦🏼♀️. I did an allergist tell me one time that my “Mast cells” were “out of whack from chemo”. It’s both frustrating and terrifying not knowing what the next med will do. I appreciate your support!
I have been on Fulvestrant (the generic for Faslodex) shots for 6 years. I have not heard of the side effects you are having. The only side effects I have had are itching and soreness for a few days. Are you on the brand or generic ? There shouldn't be a difference between the two, but if you were changed from one to the other, maybe that is the reason you are having these new side effects.
I am on the generic. The cancer center checked the last 2 lots of the 2 times I had the reactions. Both were in the same lot. Now I’m asking them to check the prior 2 month’s lot numbers before I had any adverse reactions. Trying to rule out a drug-related change before I see if my body has changed.
I’ve had Faslodex injections for five years and have had only minor itching at the injection site. I also have a ‘medicinal’ taste for a day or two after the injections. I wonder if your onc would recommend taking Benadryl or something similar prior to your injections? Keep looking for answers!
I also get the medicinal taste and odor from my Faslodex shots . I’ve been on them for 2 years now . I feel like the odor is the medicine coming out in my pee . Do you take anything else or just the shots ?
I’m on Ibrance. Every 12 weeks I have an infusion of Zometa. The Ibrance has caused a lot of hair loss, but it turns out that I rock a ball cap! 😁. I’ve had no side effects from Zometa. My CA numbers are stable, as are my monthly labs. We’ve just welcomed our first grandchild and I’m so grateful to still be here to enjoy her.
What is Flores? If you mean fulvestrant, there is an oral one. The one that got approved works best if you have the ESR1 mutation. I was in a clinical trial with a different oral one. It was great but the pharma stopped testing it, never brought it to market.
hi Fellow MBC’ers! I met with my oncologist yesterday who confirmed that I had a BRONCOSPASM immediately after receiving my monthly Faslodex injections. This occurred in January & February of 2025. He said this is a rare but well-reported reaction to the Faslodex.
He is taking me off of the shots after 6 years of having an excellent response to the treatment (NEAD for many years).
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