Just wondering whether anyone on fulvestrant alone has experienced any of the potential side effects listed for this drug? Not the injection itself but afterwards. I had my 4th set of shots 3 weeks ago. The only side effect I experienced after the first 3 injections was fatigue but this time, 2 days after the injections, and for the next 2+ weeks, I had a very sore throat, cough, chills, fatigue and muscle aches. These are all listed as common side effects of fulvestrant. I called my cancer clinic pharmacy and was told that up to 20% of people experience these types of symptoms. However I've never heard of anyone having side effects other than injection site issues, and fatigue.
Just curious whether anyone on fulvestrant has had these or similar side effects, and for over 2 weeks? Thanks! (2 covid tests were negative by the way)
Peggy
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No, just the fatigue. However, after 5 years I did develop hard lumps at the injection sites and they said it was scar tissue. Not sure I agreed with that and now that I’m off of it , everything seems back to normal. I would definitely massage injection site frequently to hopefully avoid the lumps.
The side effects after two years are that my bp becomes high my oncologist told me to take medication for the same till it became normal which was 2-3 days.sometimes i get itching in feet
I have been on Fulvestrant for 4 years. I have hard lumps at times at the injection site. I was also told (as Nocillo said) that it was scar tissue. The lumps go away with time and massaging the area. I have had hot flashes and itching. Good luck to all of us in our journey.
Now, I'm the long timer on Fulvestrant only, since April 2015. When it was started I was still feeling kind of sick in general, coming off a really bad IV chemo experience.When first starting, I remember the extreme pain with those shots and generally just feeling sick and quite a bit of fatigue, but never any fever, sore throat or chills. Now I just have some Fatigue usually the day after receiving the shots. I have so much scar tissue which is not good for absorption of the drug, I am working with a massage therapist to do deep tissue massage with a gentle type of cupping to try to reduce the amt of scar tissue and increase blood flow to those hard lumps of tissue. I have so much scar tissue I no longer feel any pain at all when the shots are given. A recent visit with my Onc about the new oral drug that could take the place of Fulvestrant is that we have no reason to investigate its use until some mets begin showing up. Oh and just for giggles, I recieved a letter from my insurance co that I was approved for up to 999 Fulvestrant shots for the next year!!! I think 26 should cover it just fine, even my Onc laughed!!!
I'm a long timer with mbc and got over 9 years from Fulvestrant. One of the things I liked most about it was not having a daily "cancer pill," LOL. I found it easy to be on. I was advised to take my weight off the side being injected and I didn't have injection site issues at all. I've known several women who've done well on it for considerably longer than the oral AI they were on first. I hope you'll do well for a long time!
Yes. Have been on this for 14 months. It’s hit or miss each cycle for me (also on ibrance and depends where I am on that schedule). I do get fatigue and chills, and hip pain. But not always. My nurse tipped me off to keeping injection sites warm for the afternoon to help reduce pain (like heated car seat or heating pad) and I found it helps. Previously I iced, and although it reduced the pain I found it created more scar tissue.
I am on fulvesterant and yes at first not many side effects but now the injection site have knots and it’s sore after the injection is given. I take again the 17th but my onc said I can skip it if I’m hurting so bad. My bones ache and I can’t sleep at nigh muscles are throbbing from the groin to thigh area and knees. I can hardly walk. I am tired but with all those meds I was tired. I go to md Anderson on 2 of April for testing and we will see. I hope that you get better and me too because this pain is unbearable. The onc will start me on a med but I’ve tried two ibrance for over three years and affinitor which was awful. Good luck are you on any other meds?🙏✝️🌹
That is interesting - well, unpleasant as anything -- but that is kind of how I would describe the pain from anastrozole. Much worse at night. When I am not moving, it seems to take hold especially. I did not have this reaction to fulvestrant. Maybe the mechanism is the same. I was also feeling so incapacitated and in pain that I thought I could not continue. Ran out of options, though. It is better lately. I do not understand why. I have started paying much more attention to an anti-inflammatory diet. I wonder if that is it? I also try to take ibuprophen pre-emptively, during the night and during the day, so the pain and stiffness do not have a chance to settle in, and I can sleep.
I’ve been trying to have a drink daily of grated ginger, 2 tbs lemon and honey in hot water. Ginger is an ant-inflammatory and I love the taste. Chris Woolams has an article on taxol vs ginger and reckons ginger is 10,000 times more effective. We keep trying…right? Chris
Well, I am not giving up the toxic chemicals my oncologist prescribed because one man says some food or supplement cures cancer. The article that backs up the claim was missing. I ended up in a self-referential loop, always linking to a missing article for the validation. I did find this:
The latter article basically says that there are many plant-based treatments that attack cancer cells in vitro, but few of them make it through human trials showing any effectiveness.
On the other hand, looking this up, I learned that ginger does more than help with nausea and inflammation, the reason I add chopped ginger to food I am cooking (not a fan of ginger tea or drinking ginger). It may enhance the benefits of taxol (which I am not on).
I obviously need to be more careful what I post but I was in no way suggesting I was going to stop my Verzenio and Faslodex. I do have reservations about Taxol but that’s my personal opinion. I started ginger when I had nausea with Verzenio but at the time I wasn’t even aware it was antiinflammatory. I am a big fan of Chris Woolams (Canceractive)
Shoot, I wrote a long answer about the risks of headlines like your guy's, that seems to imply that ginger is more effective than taxol, has no research to back it up that I could find, and about the difference among different kinds of studies. I was trying to move one line and poof! It disappeared.
Bottom line: you may continue your standard care treatment, and I didn't think you were saying you would switch to ginger. Still, I think it is reckless to make claims like Woolam's when so many people are distrustful of science, and would prefer a "natural" approach. Certainly, taxol sounds brutal, and ginger is so much easier. The people I knew with mbc who rejected invasive approaches died. Except for one, who is in a nursing home and belatedly switched to Ibrance with good results. But the cancer advanced and ate up her bones, so she remains in a facility.
Not sure if you were reading the article as Woolams cited several studies on ginger. You said I may continue with my standard care treatment so I’ll do that I will also continue with my ginger tea as I find it comforting.
He had several citations, but only one was an original study. The link was to PLOS1, an open source repository. The article wasn't there, so I couldn't tell how it was conducted. Of course, you can post what you like, read what you like, and drink what you like. I was not trying to censor your behavior, just add a word of caution to claims that support alternative (not complementary) medicine that has claimed the lives of some of my friends. -- It was not about you, but a potentially dangerous message.
Eliactida, I have been getting Faslodex injections for 3 years. I find that if the injections are at room temperature they are less painful, and must be injected very SLOWLY, followed by immediate massage of injected areas to help minimize lump formation and pain. I even ask the nurses to give me the heating pads they use for warming up the medication, & I use the heating pads over the affected areas on my drive home. Three years later and i have no lumps.
I used to get very tired and sleepy after injections during my first year, but not any longer. I do find that my urine has a strong medicinal smell for a few days after each injection.
thanks I’ll pay more attention to what they are doing this time. They say they keep it out of fridge for 30 min before giving-no heating pads. I will massage it this time too. I was supposed to get it last Monday but refused. Knots I can still feel them and could hardly walk.
Since using Falsodex I experience fatigue, nausea, severe acid reflux, neuropathy (hands/feet), lumps & itching (injection site), & This may be TMI but "It's Real" The dreaded stinky pee 😐 which last for apprx a wk after injections. I will take these side effects over that Ibrance wk off 🤦♀️. So happy onc allowed me to come off of Ibrance 125mg.
Hi , I've been on Fulvestrant and Piqray for around 10 months or so . I have had the Piqray rash and have been very tired as well. I have had neuropathy and cramping in my extremeties. I thought that the neuropathy was due to Piqray alone , however I had an operation where I went off Piqray and had a terrible cramp in my hand that lasted a day.
I took calcium and magnesium powder drink and put biofreeze on my hand and massaged it, that helped a lot. That prompted me to look up the side effects of fulvestrant and sure enough cramping of the hands and feet are one of the side effects, I have also recently been getting a lot of hot flashes and sweating . I think that the dosage is just too much for me. 500ml in two shots of 250 per side.
I am now 60 , so my estrogen has probably gone down naturally anyway. I got tested and I am in the normal range for post menopausal women.
I see my oncologist on Monday so will go over my options .
HI! I am so lucky that you have posted just now when I'm having a conflict with my onc. She wants m to take Ibrance. I have refused Ibrance because I am on my high horse about their unethical but legal scandalously high price per treatment. Asked for a less costly alternate and she gave me two of them with no info. Good old Dr Google helped me out. Those did not appeal but Pikray does. My genetic test reveals that I am PIC3CA. I think that Pikray matches up with my genetic test results but I am not sure. My brain is very cloudy because I am still recovering from very heavy duty drugs from an operation. May I ask, what is your genetic test result?
Yes, all of those. Not sure if we mean the same thing regarding chills (l have intense hot flashes followed by what some people might call chills). Hope the best for you. 🌺
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