Oh oh!! Got my second loading dose of Fulvestrant today, first dose given two weeks ago. By the time I got home from the doctor's office I had a flat red rash on my behind about the size of two quarters, about 5 inches away from where the shot was given (right side). I didn't think much about it.....then three hours ago the rash spread all over my right butt cheek. Doctor's office is closed and I spoke to nurse advice for the doctor's office, she told me to take 1 Benadryl and call back if it keeps spreading. Now my left side is getting rashed as well, looks awful!! Anyone here have an allergy to Fulvestrant, or a rash like this show up? Any help would be greatly appreciated. I have a call into the on call doctor at my doctor's office, waiting to hear back. No other symptoms, not itchy, but spreading. Bah!!
Allergic reaction to Fulvestrant? - SHARE Metastatic ...
Allergic reaction to Fulvestrant?
Next dose, I guess will be every four weeks, so the area will have a bit more of time to rest and you may not develop such rash...other option would we to switch to another fulvestrant maker as you maybe reacting to some of the excipients. Antihistamine should help a bit. Best regards.
Or they may give antihistamines and steroids before the shot.
I had a reaction to a different drug so they gave me these drugs before each cycle
I think you are right on the spot with your advice. The Urgent Care doctor put me on Prednisone and told me to continue the Benadryl. One of my pups is allergic to one of his vaccines, the Distemper Parvo series, so our vet always gives him an injection of Benadryl 1/2 hour before the vaccine, and he does fine with that. I'm not ready to give up, Fulvestrant is a good medication, and I'm going to see it through one way or another! Take care!!
Thank you for your advice, excellent advice!! I have messaged my doctor and asked for Faslodex, the name brand. It does use a different medium and different stabilizers. Most of the time allergic reactions, or even different types of inflammatory responses than allergies arise from the mediums and stabilizers used in medications, rather than the medication itself. Generally, name brands carry the highest quality degree of carrier medium, stabilizers and preservatives. That's not to say that generics are a problem, the the brand name goes through the cost of the patent and they use the ingredients known to have the least risk of reaction, since they are the patent and get more money for the product. I'm going to keep trying, and I think my doctor and I will make this work. It's just a shock to me, since I've never had any side effects or reactions to any medications yet. Well, I guess it was my turn! Thank you again for your advice, I very much appreciate it!! Take good care!
I hope the switch does the trick, together with antihistamine "prophylaxis". Better if you can manage without steroid. Let us know how it goes. Best regards.
Thank you! I hope so too! Take care!
Take antihistamines until you get to talk/see your doc.
I didn't, but one question: did the nurse or doctor swab you with alcohol first? I just wanted to make sure this was an allergy, not something else. If it is an allergy there are ways of coping. There seems to be, for some women, sometimes a difference between the generic and the brand of this medication. You might ask about that. If possible, consult someone at a university hospital.
Hi there! Yes, I was swabbed with alcohol first, and I'm not sensitive to alcohol on my skin. I don't know 100% that this is an allergy, or maybe a different type of inflammatory response not driven by eosinophils. Either way, Benadryl is good for driving down inflammatory responses even when they are not allergically driven. I consulted an Urgent Care doctor via Zoom with a doctor from my insurance company and she put me on Prednisone for 5 days and had me notify my oncologist's office of that. I am so stubborn, I will find a way to make this work. I did message my doctor and ask to be put on Faslodex, the name brand. My doctor is awesome, I have no doubt that she will get the name brand for me in two weeks. More stubborn than cancer, these damned little mutant cells have a fight on their hands with me! Thank you for your response and advice I very much appreciate it! Take care!!
Hi, and hope it works out. By the way, I had years on Faslodex--about four--from March, 2018, with few problems apart from these little marble-like hard thingies that tend to appear at the injection site but can be somewhat rubbed away---also walked a lot and went to the gym (crosstrainer, ballet barre on floor, lifting weight with legs) and all that helped. I was taking Ibrance for the same amount of time--more, actually--both finally failed, alas, but I'm hoping the generic version of Xeloda plus an infusion I can't remember the name of (starts with B) works.
I do hope your new protocol works for you. I have heard amazing things about Xeloda, it sounds like a very good drug! I was on Ibrance/letrozole/Xgeva for three years.....and then progression. My doctor started me on Verzenio, finishing my fourth month now, and markers started going down. Now she staggered in Fulvestrant in place of the Letrozole, wanting to see my markers go down faster.....and then this happened. But I'm tough and stubborn, and determined to make Fulvestrant work, whether it's changing to the brand name or dosing up with some Pred or Benadryl ahead of time. There are some small new studies that changing CDK inhibitors and endocrine therapies can result in more progression free time. Maybe it's something you can ask your doctor. It seems to be working for me. Finding ways to extend time is the goal, and the more meds in the arsenal, the better and longer the timeline gets. Either way, Xeloda has a wonderful reputation for time and quality of time. I wish you the very best!!
Thanks.
One thing: if you haven't had genomic testing, find a way to get it. I crowdfunded and then (I live in Germany) doing so seems to have embarrassed my insurance co. into paying. So now I have a "desperation oncology" fund. What I found out was that I was immune to Letrozole--something I wouldn't have known without the test. Also, they tell me which bad genes I have, and sometimes clinical trials are geared specifically to those genes--also certain medications.
Hi there! Yes, I have had genomic testing done 3 different times. I do have the PIK13 mutation and the CDN1 mutation (this one almost always comes with lobular carinoma which is what I have). Turns out that the CDN1 mutation blocks Tamoxifen which is what I was on for 7 years after my initial diagnosis stage 1-0 and the oncologist I was seeing didn't care and would only prescribe that. So my cancer spread. I have a new oncologist now, I switched when I found out the cancer spread. Nothing in my genes showed a resistance to Letrozole, it's interesting since I wasn't aware that could happen. Do you know which specific test showed the resistance to Letrozole? I would love to share that with my doctor to find out more. I really appreciate your input, thank you!
ESR1 mutation and MYC-Amplification were two of the findings as I remember but now I can't remember which or what caused the Letrozole to fail, but I do remember being told it was some mutation I had. I've only had genomic testing done once, in 2018; at the timeI asked whether these mutations changed and my doctor said that was the big question. I was interested to see you'd had three sets of genomic testing. I knew the Ibrance and Faslodex would fail eventually since I'd been on them over four years but was still surprised.
This is great information to know, thank you for sharing your information. As of yet, I do not have the ESR1 mutation or any amplifications. I'm in the U.S, and my original genomic testing was done on my self, and specifically on the cancer itself at the time of my first diagnosis in 2013. That testing was approved because my mom had lobular breast cancer as well, then later died of primary pancreatic cancer. My father had melanoma but then later passed away of primary esophageal cancer. Those cancers can carry the BRCA1 and 2 mutations. But I did not have those mutations upon testing. When my cancer became metastatic my new doctor (3 years now) ordered a second set of genomic testing on my self, and on the bone biopsy done in 2019 to affirm the metastatic progression to my bones. Both came back the same as in 2013. It's interesting because the cancer biopsy on the cancer still showed only a 7% possibility of progression in both sets, yet, there I was....with many bones riddled with breast cancer. Recently, upon progression being on Ibrance/Letrozole for three years my doctor re-ordered genomic testing to make sure the ESR1 expression didn't pop up, and that the cancer did not become triple negative (the fact that it could do that was a complete surprise to me). However, the testing came back with the same results as in 2013, and 2019. The third set of tests were done by a different company, to set our minds to be assured that mistakes were not made upon reading the testing. Sure enough, no mistakes, nothing has changed. My doctor had to fight with my insurance companies and appealed many times in order to push through getting it covered, but they did cover it in the end. My doctor believes that with proven progression and new biopsy, new genetic testing should be done to cover the basis since breast cancer can change dramatically through progressive time frames. I really hate cancer, but I'm trying to live my life the best I can, and the doctor taking care of me now is my champion, always having my back. Thank you again for sharing your information, knowledge is power! Take good care!
I didn't have a reaction at all. Maybe a bit of stiffeness at the site of the injection. You have done the right thing in contacting the doctor and do take the antihistamine. Maybe it was just the way it was administered. Slowly is the key. Anyhow, good luck with it.
Cheers, June S.
Thank you for your response. I saw an Urgent Care doctor through my insurance company, and she put me on Prednisone, and told me to continue with the Benadryl. She had me call the on call doctor at my doctor's office and let them know what she prescribed, and I also messaged my doctor as well. I never react to medications, and the nurse did inject slowly, and I never felt any pain. I think my body needs to get used to it. I'm not ready to give up on Fulvestrant, but I think asking for the name brand might help since it uses different stabilizers and medium for the drug. I think it will be o.k. Thank you again for your input!
You are welcome. Glad you know you are getting sorted out.
Cheers, June S.
Many of us react to various fulvestrant generic brands. Some contain preservatives so they can be stored at room temp. If what they gave you was not stored in a frig and had to be warmed up--that is a clue. Ask about the brand name. I talked to the pharmacist at my cancer center, and ended up tracking all the various brands they had given me. They managed to order one that I could tolerate. Definitely do not accept another injection of that same brand until you have time to research it! Mylan caused red spots, and others at my clinic had problems with it too. And Fresenius had preservatives; Sandoz used to be good but might have switched to having preservatives too. You can study them on-line. There have been other MBC ladies here that have posted about the same problems. We deserve quality drug products! Best to you! Kay
I take two Tylenol 650 prior to the shot. When you find a gentle nurse ask for that person next time. I put lidocaine on my butt an hour before my shots and put ice on my butt after the shots, then walk for half an hour at the medical center. I put a heating pad on when I get home. The next day I feel awful. But I’m here to complain. LOL.
This is a terrific sight to complain, and vent for sure!! We are all "sisters" of a sort with this damned disease dancing around our bodies causing problems. I'm lucky, I have not felt pain at injection or later, no soreness or anything like that. It was an easy start that got goobered up by this rash. I think I will find a way around it, whether it will be taking antihistamines beforehand, or Pred, or switching to Faslodex the brand name, but I'm not giving up! I'm definitely more stubborn that this disease!! This is such a good medication that usually results in progression free lengthy time, so I will wrestle this reaction down and find a way! Thank you for you input. Take care!!
Hello! I was on Fulvestrant for three years, and had what sounds like the same reaction - sometimes pretty severe - but it always went away in a couple of days. Sometimes it was itchy, too. My oncologist said it was "not uncommon". The nurse recommended a heating pad, but that seemed to make it worse. I developed a routine: Benadryl about a half hour before the injections, and every four hours after for a day or two. Ice packs (I use bags of frozen veggies) for the first day, and hydrocortisone cream as needed for the itch. It's annoying, yes; but I always remind myself that the benefits outweigh that. Did they tell you about the lumps that will probably develop at the injection site? Perfectly normal, and the nurses know how to work around them each month. Gentle massage helps with those, and they also will eventually go away. Hope that helps. I wish you good luck & comfort. ❤
I think so far, I've been lucky, no bumps, swelling or pain at the injection or injection site, but I assume the bumps will happen as granulation and some scar tissue begins to form with the continued monthly injections. I'm just grateful for this much since it's new to me, and they have so far been easy injections to take (except the rash of course!). I am definitely not ready to give up on the medication, as you said, the benefits way outweigh this inconvenience. Your suggestions are wonderful, and taking Benadryl beforehand is a wonderful idea. Maybe even ask for the RX of Pred for the day before and day of. I will definitely talk to my doctor about your suggestions, I think they are right on! One of my pups is allergic to the Distemper/Parvo vaccines and our vet injects him with a Benadryl dose 1/2 hour before the vaccine, and he does wonderfully with that method. I've never had any side effects to any cancer meds, or any meds ever, so this was a real shock to me. But I will carry on, and keep on trying with this. I have also messaged my doctor and asked for the name brand, Faslodex, since it uses a different vehicle of delivery and stabilizers. Thank you for your input, take good care!
Here is some more info in an article I found. In one of my FaceBook MBC groups someone said her oncologist advised to NOT TAKE any drugs that are manufactured in India! Note info about the Mylan company, which had now been acquired by Pfizer. Hope you find a better brand of fulvestrant!! Or the name brand!! Kay bloomberg.com/news/features....
Yes, that is definitely something I instantly thought of! I have messaged my doctor and requested Faslodex, the name brand made by AstraZeneca. I will also call her office on Tuesday since Monday is a holiday here. It's a shame that so many medication preparations are now being made in countries that use contaminated sources and sub par ingredients. Thank you for sharing the article, I will print it and bring it to my doctor! Take care!
I hope you can get the Faslodex name brand. My clinic could not figure out how to pay for it--so that is when I got the names of all the generics they had used, and picked one that I tolerated. My (former) cancer center's purchasing dept would just purchase whatever was cheapest--and they kept switching brands!! Do they really think this does not matter to patients??!! At first I too blamed the nurse that injected it--but no, it was not the nurse that was the problem. Best to you.
I hope my clinic can figure it out! They have their own pharmacy so I'm hoping the pharmacist will figure it out. Seriously, everyone is trying to save pennies here and there......when it comes to health care, it's really a problem. Sometimes generic is fine, but when it's not, the blow back can be very bad. Thank you for the head's up! Take care!
Yes! I had the same reaction. The nurse most likely injected it too fast, that is exactly what happened to both my injection sites (second loading dose). It took about a week for it to go away, just in time for my third dose. I used lots of ice packs on the welts to keep them calmed down. My whole Oncology team felt bad but it was a teaching moment for the nurse. From there on out we make sure each injection is at least two minutes long.
I’m sorry you are experiencing this.
Allison
The nurse that did my injection is a seasoned oncology nurse, and it did seem that she injected it slowly, but not as slowly as the first time. So, I'm wondering if perhaps she was in a hurry and went quicker than the first time. She seemed hurried. Honestly, getting these injections is like accidents that feel like slow motion. She could have taken one minute, three, or five, and it would have felt like an hour to me! I will talk with my doctor and ask that she sit with the nurses with us before they inject in two weeks. My doctor just changed offices, to another facility (same company just another office across town), so I will be seeing new nurses. I think the fresh start with new nurses is a good thing at this point. Thank you for sharing your situation with your first two sets of shots, you have put my mind at ease!! Take care!
This is what I find so puzzling. How women have different reactions to same meds. I always felt that the falsodex injections was the easiest part of this. It was just like donating blood. I would run out and sit and have no pain. Just a little lump for a few days and then gone. Unfortunately, now it seems to be growing in my liver rapidly. I am in my fifth year and from the statistics I am reading, it is almost the end for me. She even told me that if this Xeloda does not work (I could not handle the highest dose and I stopped...I see her tomorrow and she will be annoyed) that I will only have 4-6 months left.
She also dislikes that I read this forum board but I told her I learned more from here that I was never told by her.
Hi there! I'm saddened to hear that you are not tolerating Xeloda. I hope that you can find something else quickly, as life is precious. Have you tried the new SERD's that are in trials? I have heard they will be approved very soon. Perhaps you doctor can get them under the right to try laws? Yes, it is so strange how we each react differently to different medications. This is the first medication I have had any reaction to. I have found the shots themselves are not painful at all for me, but the rash was certainly annoying. Fulvestrant has a 40 day half life, so it's impossible that my rash was an allergy to the actual medicine since it subsided within 9 days give or take. My guess it's one of the fillers and preservatives being used in the generic version I got. I'm hoping to get the brand name next time, and hoping for no rash. It was a small rash but nonetheless, annoying (and itchy). I wish you the best, I hope you can find a medication someway somehow that will give you more time. Take care.
Hi , this post looks to be a month old , I hope you got the issue with the rash handled .
I'm glad you called the on call doctor.
I too am on Fulvestrant.
I recently got two shots one on each side of my buttocks.
The nurse who gave it to me put one of the shots too close to my Sciatic nerve and I had terrible pain in my buttocks and down my leg as well . It has gotten much better , but took a month . The shot is supposed to be given well away form the Sciatic nerve and I now remind whomever that is giving me the shot that I had that issue .
Sending best to you💗
Hi there! It’s good to hear that your sciatic nerve settled down and that your back is feeling better after that set of shots. My rash took over a month to go away, but did….lady set of shots I had no rash or bruising so I think mine was also a problem of how the shots were given. My daughter is a registered nurse and she has told me that the amount of fluid the viscosity of the fluid and the area in which they must be given is a very very difficult injection to give. She says that we are full of blood vessels and nerve endings in the sciatic nerve as well all in that region, but there is nowhere else to give these injections. Not fun! Thank you for responding to my question and letting me know what happened to you so that I may try to forewarn the nurses as well about the sciatic nerve. Take care!
Hi , yes we all have a lot to deal with . I too am glad to be on this site . I am 59 , we are about the same age .
I have the Piq3CA mutation
I am on Piqray now and seems to be doing well . I did get severe diarrea from it and have been taking Aloe Vera juice (organic)2 ounces before bed with a few drops of colloidal silver. That helped , no more stomach issues .
I take it now nightly, as don't want the stomach issues to take me off the Piqray.
I just watched a video I thought all would like to see regarding elatonin . I will get some and see how it goes. I will start with a low dosage. If you do start taking melatonin make sure you talk to your doctor. I tell my doctor everything so if it helps me he can pass it on to others.
Love and healing to you all 💗
Thank you for sharing your information. I will ask my doctor about your suggestions. I’m sorry I have not responded sooner, we have been evacuated from our home for to an out of control wildfire. Still in the hotel with my 4 dogs, trying to figure out when I can go home or if I still have a home. Take care, and thank you!
Sure , I hope your house is unharmed by the fire.
I'm glad you and your dogs are safe 💗
I am having the same issue. Flat welts painful and itchy but only on the one side. No reaction on the other side. This is the second time it’s happened this way. First dose I had no issues but the second loading dose is when the rash appeared. They waited 3 weeks between doses and I stil got a reaction. What did you end up doing ? Were you able to keep taking the shot? If so did you get a reaction everytime? It’s so strange that I’m only reacting on my left side. Thank you for any input
Hi Fightinggma, I ended up getting dosed with Dexamethasone prior to the next couple of doses after the rash dose showed up. I'm not sure why, but after taking the steroids for the next couple of times I was injected, the rash stopped appearing and I was able to continue getting the shots for a few months with no problems and never having to take steroids again. Perhaps, and I hope, this may work for you. Good luck, and best wishes, I hope it works for you!!
Thanks for getting back to me. Did you have a reaction on both sides or just one? That’s what I find strange, why would only one side react ?
My reaction was only on one side, my right side if I remember correctly. I would not say it was an allergy, because it was only one side, but maybe an intolerance? But my body was able to overcome the problem after the steroids. I really wish I had a better explanation.
ok thx for letting me know. The oncologist had me talk to an allergist and she said it was not a true medical allergic reaction that would exclude me from the shot but if I got it again., she’d like me to see a dermatologist. I have a feeling I will be put on a steroid also. How many days did you have to take the steroid? The allergist did give a strong prescription steroid cream and it has helped a bit. My son is an acupuncturist and the treatment helped last time so I’m going to see if I can get one tomorrow. Thanks again
I took steroids for 5 days after the first shot, and then one day prior and four days after for two subsequent shots after that. Then did not need to take anymore since the rash stopped coming back. I hope this helps. A short stint on steroids should not be damaging at all.
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