Faslodex Girls Thread
Comments
-
Just wanting to get the word out about a new weekly Zoom meeting getting set up. You do not need to be working to attend this meeting but the intention is to have a time that will work for those of us that can't make the current Zoom meeting times that are held during the work day. Here's a link to the thread for the input on a time and day that works for you: https://community.breastcancer.org/forum/8/topics/882768?page=1#idx_3 . Thank you!
0 -
I'm just writing to give hope. I'm doing well. Dr is very happy. 5 yrs on faslodex.
0 -
Gailmary, that’s so awesome. I think of all the shots you’ve had to get, but it’s so worth it. I’ve only been on Faslodex 10 months. Was on Ibrance and Letrozole for two years. Now on Xeloda and Faslodex and doing well. I hope you get many more years on this treatment.
0 -
Hi. I too would like to provide hope like Gailmary. I had my Falsodex injection last week, my dr. Informed me that it was my 84th shot, I am doing fairly well.
That is 7 years on Falsodex! Thankful that it is covered by Medicare. I see the payments made by Medicare. Thankful for the drug.0 -
Hello everyone - I have a question and hope someone can help me. I have been on Faslodex 2.5 years and now have three “rump lumps” - two on my right hip and a new one on my left hip from last week’s injection. What, if anything, can be done to get rid of them? I’ve tried a hot tub with the jets spraying on them to no avail. They don’t hurt but are rock hard. And is there anyway to keep them from forming in the first place?? I remember reading someone used a rolling pin? Did it help? Thanks for any suggestions.
0 -
Are they warming up the shots first? If not that might help disburse the material.0
-
Hi Parakeetsrule - the shots are room temperature but not warmed up further. I now have 3 “rump bumps” and don’t know how to get rid of them - two on the right hip and one on the left. 😞 I’m also experiencing a good amount of muscle soreness and aches in my upper arm muscles and both thigh muscles. I am wondering if anyone else has this problem from the Faslodex shots? I don’t think it’s Ibrance but having been on Faslodex for 2 1/2 years it must have built up and causing these muscle aches. Wishing everyone a blessed day. Sharwar
0 -
Sharware - I've been on the Faslodex almost 3 years now and I'm in the same position. I have the rump lumps too and so many now that they sometimes have trouble finding a spot to inject. They do let it warm up a bit for me but that hasn't seemed to help. I looked into it and Faslodex is steroid based and is mixed with castor oil to slow absorption because by itself it has a crazy fast rate of clearance from the body. The castor oil is probably the culprit. My routine is sitting on a heating pad and then doing a foam roller and individual massaging of the bigger ones as much as I can tolerate. They get a little smaller but don't completely disappear and stay pretty sore. I wish I had more answers for you and I am anxious to see what others have tried.
0 -
Hi, My name is Sandy I am not sure I am supposed to ask questions here, if not please let me know where I can ask questions.
I will take my first Faslodex shot on Thursday. I was hoping someone could tell me what to expect
Is it like other Chemo, will there be pre-meds? what side effects can I expect?
Thank You,
Sandy
0 -
Hi, Sandy! I'm happy to answer your questions. Faslodex may be cold. Please ask them to make sure they warm it up. Also, there are no premeds. It's not like chemo, a shot in each butt cheek into the muscle. Try to make sure whatever side they are injecting, you take the weight off that foot and try to relax. Don't hold your breath. I tend to talk to the nurse giving it so I don't concentrate on it. The liquid is thick, so ask them to go slow. Good luck. The unknown is never fun. I was a little dizzy after the first set, but I think it was because I held my breath. I have not had any different side effects. I sometimes do get a little bruise or a bump after for a few days.
0 -
It's just two shots in your butt. There are no pre meds but you'll want to make sure they are warmed up ahead of time to room temperature, not straight out of the freezer. I don't have any side effects but some people do. I just bend over and look at stuff on my phone and it's over in couple minutes!0
-
Has anyone opted for a dose reduction of Faslodex? I am currently on the 500mg dose given in two injections and have been for the better part of 3 years now. I have the expected side effects of hair thinning and stiffness, dry hair and skin and just general lack of estrogen stuff. It was reasonably tolerable but lately I have been more sensitive to the fatigue and memory/brain fog issues and despite good efforts on the nurses part, I have more than a few painful lumps in the rear. It's really begun to affect my job and my ability to function. I have been researching dose reductions to reduce my fatigue level and balance out quality of life. Any thoughts or input would be appreciated. Thanks.
0 -
Emac - I have had pretty significant side effects that I think are from Faslodex and I looked into whether going to 250mg was an option and I came across several articles that showed that the 250 mg was not as effective as the 500 mg. I found this link that indicates that 250 mg at one time was probably the normal dose and it was changed to 500 mg: https://www.breastcancer.org/research-news/2012121...
I am struggling trying to deal with side effects too. I hope that they get an effective oral SERD soon!
0 -
cowgal, I'm sorry you're having such bad side effects. I believe I read the oral SERDs might come out in February. I hope it will be better for you.
0 -
Cowgal - Thank you. I had found several studies concluding that also. I spoke to my oncologist tonight. Aside from the physical issues of hair thinning and dry skin we are trying to determine if it's the Faslodex that is contributing to my brain fog and overall painfulness. We are going to try skipping my next dose and seeing if that improves. If it does I may trial going on letrozole or anastrozole and if not I am in hopes with you that maybe the oral SERDs will be available soon. February would be exciting.
0 -
Hi Sandy,
No premeds, and not like chemo. It is an estrogen blocker, and I have had no side effects except for sore bumps on buttocks which last for 3 days after shots are given. I like it much better than letrozole, which gave me acne, achy joints. Bumps can be managed with walking, massage, heating pad, for me. The side effects is from the castor oil which is the vehicle in which Faslodex is sent into your body. That takes awhile to be absorbed by the body I understand.
Good luck!
0 -
I think my faslodex days are coming to an end. Just did a course of radiation to a met over my sternum and even though my PET showed the mass shrinking it also showed 2 very bright hilar lymph nodes. Plan for biopsy in a few weeks. I've been on faslodex for a year and was hoping that radiation would stretch it out longer since I feel so great right now. Assuming my hilar lymph nodes remain ER+ HER2-, where do people go after faslodex? I'm sure my MO will order NGS, but I'm one of those people who has to research all the options. In the meantime, getting my injection tomorrow!
0 -
I have been receiving fulvestrant injections since May and learned so much from this thread, thank you all!. So far, I have had 8 sets of injections with 8 different nurses with varying degrees of skill and compassion. From reading your suggestions I knew to say NO to the nurse who only wanted to warm it "for a minute" and NO to the one who wanted to get a second nurse to inject at the same time so they could "get me out of there".
At my most recent appointment I was fortunate enough to have Irene, who did things differently. She sat on a chair behind me, rather than standing. This lessened the amount of leverage to push the medication quickly. She also told me that she would let me know how much had been injected in 1/4 increments and that if I felt the pain increasing during the injection, I should tell her to stop, as that meant that the medication wasn't being absorbed quickly enough. I stopped her twice on each side and she waited patiently until I told her that the pain had lessened before she proceeded. The result was much less pain and bruising than I have had so far.
Hope this info helps someone. I will be insisting on these techniques from now on.
0 -
thank you everyone, this thread has been so helpful. I have my first faslodex injection in 3 days ( also start ibrance that day). I’m still nervous/anxiousbut it helps to kind of know what to expect.
0 -
Believe60, it’s been 13 months for me. It seems like it was just yesterday. The first time I got a little dizzy and had to sit down. I think it was more because I probably held my breath than the injection. Try to breathe. It hasn’t happened since.
0 -
I've been on Verzenio/Faslodex for about 3 years now. Recently I've struggled with increasing pain, fatigue and brain fog. There is no evidence of progression so we've been looking at all my meds. I asked if I could skip my Faslodex this month just to see how much of a factor it is in my symptoms. I just got my Xgeva shot and stayed on my Verzenio. I felt just as poorly so I think that the Faslodex isn't really contributing any more than anything else to anything. I really think the change in my symptoms is a delayed response to radiation I had done in August. It's worked well for me this far so I don't see any reason to change it.
0 -
So I got my first Faslodex injections yesterday (along with starting ibrance). I think I lucked out and had the most wonderful nurse. I did not feel either injection, and I have no lumps or even a tender spot on either side. I don’t know if it will always be this way, but nice to know it can happen! Since I started 2 drugs same day, not sure how I will know what side effects are from what if I get them.
Emac I hope you are feeling better
0 -
eMmac, I'm wondering why you are not suspecting the verzenio. Isn't that like ibrance? I would think you would consider dropping the verzenio in that case and do faslodex alone. That's all I'm on the last 3 years now plus 2 yrs before that with ibrance and letrezole. But what do I know?. Good luck.
0 -
Believe60, so glad your shots were not bad. It definitely depends on the person giving them.
0 -
Hello: Does anyone know what happens if you delay or miss a shot. Been on Faslodex since January 2019. Have not missed a shot, worked vacations around the shot. Wear KN95 masks while out. Even with being super careful I wind up with COVID. Started last Saturday, still positive this morning. Dr office said I have to have a negative test to come into the office. Shot is on Wednesday. Know I can probably push it to Friday. Hopefully will test negative by then.
Thanks
Deb
0 -
Deb,
I have been on Faslodex since 2011. Yep, you read that correctly. During that time I have bumped shots two or three days later than my usual schedule because of illness, vacations, etc. with no problems. The only issue comes with trying to get them a day or two earlier; then my doctor's office has to finagle with Medicare to get permission---as if anyone sane would want to have more than two injections per month!
I finally got Covid a couple of weeks ago after dodging it since the pandemic began. I had mild case and tested negative on the seventh day. With luck, you will too. If you're still positive late next week, contact your doctor and see what s/he recommends.
Tina
0 -
Thanks, Tina. Still testing positive this morning after 9 days. Can push shot to Friday if I need to but don't know what happens if I'm still positive next week.
0 -
GailMary - Yes, you are right that Verzenio can cause these effects too. I had stopped the Verzenio recently to do some radiation therapy at my RO's advice and felt only minimally better. I decided since the Verzenio/Faslodex combo has worked well for me thus far just to stay on it and not rock a boat that has been stable. I was recently put on a low dose Dexamethasone and feel much better on that so I have a referral to endocrinology. I can't stay on the steroids but I think that was a huge clue and hopefully we can find something that can keep this improvement. I went from questioning whether I could tolerate treatment to feeling almost normal with minimal pain.
0 -
So my first faslodex shots two weeks ago left zero pain and was hard to find injection sites. This second round I have a huge hematoma/bruise on one side. It’s hard to tell but it might be a bit in front of the actual injection site. Are these common? Or should I worry about blood counts. My MO did not do a 2 week blood check during my first cycle of ibrance (started same day as faslodex) so I don’t know. I was surprised at how far over to your side and high on the buttocks these injections go in. It’s more like my hip. Thanks.
0 -
I’ve had times of a lump and bruise but not every time. Sometimes they put them closer to my hip, and the next time it will be lower and to the back of the butt. The last ones I had were great, no pain at all. One time a few months ago, when the nurse injected it, I felt it shooting right to my hip. That one scared me a little. It was fine. The tingling went away fairly quickly.
0
