Faslodex Girls Thread
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@threetree I'm sorry to be so late in replying. I didn't realize you had responded. Back in the old forum setup there would be an email message. My mail and bell in upper corner didn't show anything but older notices.
Well, I think you are gonna laugh when I tell you where my Irishlove came from. A dog pound! Our son wanted a big brindle dog and so we went to the Humane Society to look (while living in the Boone, NC area). The poor dog was sitting in a corner by himself. He had been adopted and returned. The mother said the dog jumped up on her kids. I called bullsh*t, because he was 10 months old and already showing signs of hip dysplasia. He was a Plott Hound /Shep (over 100 lbs). Then some teenager came to the Humane Society and asked to walk him. He stole the dog!!! The family made him return the dog. It was all so darn sad. We adopted him and our son named him Irish. A niece added the "love" onto the Irish. When my son moved out, I wouldn't let him take the dog. I fell so in love with Irishlove and our Great Dane, Donatello did, too. So we adopted another dog for our son. Irishlove passed soon after Donatello in 2017. I still miss them so much. We've rescued many, many dogs and cats, almost all special needs dogs (Donatello was blind in one eye), but those two, well they had my heart.
Now for the other Irish man in my life, he's from Ormond Beach, Fl. I'm from Reading, Pa. I know Hazelton well. Paternal GM's family from coal regions, not far from Hazelton.
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Threetree, sorry you've had this problem forever. I've had lifelong issues with insomnia. It's kinda managed now. Depression isn't new to me either, though I've never noticed a problem more in winter.
My happy place is always out in nature like our woods. MKestrel you would love it. We've worked hard at clearing out invasive species but then new ones move in. No ticks here. But across the valley not even 1/4 mile there are cause it's moist there in the shade. Way too many deer. We had a woodland in n Wisconsin a few years back. Loaded with ticks. Stuff of nightmares.
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threetree,
What brand/type of "happy light" do you use?
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I will start my 6th line of treatment on Monday: Faslodex + Letrozole. I took Letrozole with Verzino and in January 2024 I will be starting my fifth year of being de novo MBC with mets just in my bones, which I can't feel!
I was taking Enhertu but have had a lot of coughing and difficulty breathing, so my oncologist thought we should stop Enhertu because she is worried about the side effect of pnuemonitis in the lungs. She gave me some steroids to take, and I feel so much better! I just had CT Scans with contrast, and I was SO relieved that there is no progression to my organs!
Another reason we are stopping Enhertu is that my tumor markers shot way up on my last blood test. I am glad I get to have a blood test on Monday before the shots. If you can share your side effects with me with Faslodex, that would be helpful.
I know about how Letrozole really made my arthritis hurt a lot at first, but then it finally stopped aching. Wondering about the mood swings. That would be a new side effect for me.
I am ER+, PR-, and low HER2. There are a lot of medicines I can't take. My oncologist ran gene tests last year, and so my biggest worry is running out of medicines that will work.
Only Xyloda and Enhertu have worked. Ibrance, Verzinio, and Affinator didn't work for me. I asked my oncologist if we can try Xyloda again if Faslodex doesn't work because I had a huge chemical reaction during a cruise where my feet blistered. I think it was the consumption of alcohol on the cruise. After that my feet never felt good, always red. I lasted a year on Xyloda, but she said that we can try it again. I go to the Monday Zoom MBC meeting - a great group of ladies. I tried the Wednesday Zoom MBC meeting this week and they are lovely ladies too. - Francie/Woodlands0 -
Hi, Francie. It’s Kris. I was on Faslodex for over two years. I really didn’t have any side effects that I know of with it. I was taking it with Xeloda, but they took me off the Xeloda because it wasn’t protocol. I did have to take a nap daily when I was on that. The only thing I can say about Faslodex is they aren’t the most comfortable shots to get, but just make sure they are warmed up first. I always put the weight on the foot that wasn’t getting poked so I could relax that side. Then I’d switch when they did the other side. I’m sure others will have more advice for you. I tested and was found to have the ESR1 mutation, so I’m on Orserdu now.
I’m so glad there was no progression, and I’m glad your doc is okay putting you back on Xeloda if the need arises.
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Curious to know if anyone else gets upper stomach (epigastric) cramps after getting Faslodex shots. Also facial flushing. I got my last round of shots 2 weeks ago, but I've noticed that side effects can linger for quite awhile. I had some mild "here and there" stomach cramps and the flushing over the first week after the shots. I also started taking some Amoxicillin last Friday and noticed increasing stomach cramps and facial flushing at that time. I thought it was likely from the anti-biotic and stopped taking it a couple of days ago, because I was concerned that maybe it was causing an ulcer or something. Called a nurse line over the week-end and she told me late Sunday afternoon to go to an urgent care or something. Well it was rainy, getting dark, and the urgent care was only open another hour or so, so might not have even been taking new people. I decided to just quit the amoxicillin, but have continued to have the stomach cramps and facial flushing. The Fulvestrant side effect list on some websites say that it can cause "stomach upset" and flushing (hot flashes, of course). I'd just like to know if any of the rest of you have had similar symptoms that you determined were from Fulvestrant and not another source. Thanks so much all.
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Hi all, new here and still so terrified and in shock with sadness and a bit of despair at times. I'm getting my first injections of Faslodex at Mayo soon. Without telling me the worst case scenario, since I don't know how I'll react yet, how should I prepare? What should I have on hand for typical side effects and what has helped some of you minimize typical SE? How long might I feel awful from the injection? Do SE get worse or better as tx goes on?
Thanks in advance,
Claire in AZ
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@threetree I’m sorry you’re having these issues. When I was on Faslodex, I didn’t have either of those issues. I have had hot flashes, but I’ve had them since my hysterectomy in 2012, and I don’t believe they were any worse on the Faslodex. They were around the clock and are still around the clock now, and I don’t take Faslodex anymore.
I just saw someone post on a Facebook group I’m in that they got C diff from an antibiotic, and it started with stomach cramps. They waited five days and finally sought help. They ended up in the hospital 11 days. I’m not trying to scare you, but just be aware and maybe look up symptoms of C diff.
@claireinaz I did not have significant side effects with Faslodex. You may have some pain where they inject and possibly get some lumps, but ask them to go extra slow when injecting and make sure the Faslodex has been warmed up. I also stood on the leg that wasn’t getting the shot and let the leg where they were injecting relax as much as possible. Just so you know too, your urine may smell different for a few days after.
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Kbl - Thanks so much for replying. The info you've given is helpful. Interesting about the C-diff, because it is listed as a side effect. I will indeed look up the symptoms of C-diff and see if that makes any sense. I've got those cramps again this morning, although now I'm wondering a bit if they aren't from simply muscle soreness from coughing, sneezing, and bad posture with my laptop and phone, etc. Just found out yesterday from recent scan that I also have 2 new fractured ribs, am wondering if they are playing a role too. I'm in the Pacific Northwest and we are having a long series this week of what we call the "Pineapple Express" - it is a firehose of steady rain from the south pacific that comes up here and makes us all miserable for as long as it lasts. Some of this could also be just joint and muscle pain from the Faslodex combined with our low barometer, high humidity, and tons of rain. One thing I hate about this stage 4 business is trying to figure out just what is causing what. It is impossible a good deal of the time. I've worked with people in adult family homes and nursing homes for years and I am well aware of C-diff and how bad it can be - sometimes fatal! Thanks for bringing it up, and I will look into that for sure.
Claire - Oh once again, so sorry that you are now having to deal with this stuff. It is surreal for sure. I've been taking Faslodex since the middle of last April and I find it so-so to deal with. Like all anti-estrogens it can cause a lot of joint, muscle, and bone pain, along with brain fog and fatigue. Also like all anti estrogens, we all react a bit differently and it is worse for some than others, so you will have to see how it is for you. It is something like the aromatase inhibitors but like all of them, it too has it's own twists, so you might hurt and ache somewhere differently than you did on different AI's (I took Letrozole). I would echo what KBL has said about getting the shots: slow injection, make sure the vials have been warmed up, and put your weight on the opposite leg from that one that is getting injected. I have made it a point every time to ask the nurse on duty to please draw the shot out over at least 2 minutes. I think they have a standard of about 30 seconds (could be wrong, but it's less than 2-3 minutes) and they will go with that standard unless you say something - more than once. Also, the vials are kept in the refrigerator and the nurse usually orders them on your arrival, so if they go straight for the shot they will be cold, and that's not a good thing. I am so lucky to have a friend who accompanies me, and I ask the nurse immediately to get those vials out if the fridge and then my friend sits and warms them up by rolling them in her hands, while the nurse takes my vitals and asks questions. I tell the nurse that I would like a good half hour of having my friend warm up the vials before the injection and they are usually happy to oblige. One of the nurses even brought my friend one of those warm blankets they have and she wrapped them up in there to warm them up too. In addition to that, I sometimes see the palliative care NP for a routine chat at the same time as my shot appointments. I have started to asking them to schedule the NP visit before the shots, and then my friend has the whole time with the NP to warm the shots up before the actual injection appointment time. You just have to be proactive and remind them and ask for these things each and every time. Final tip, and I got this idea from Wendy in Wisconsin, i.e. Weninwi who has great posts here too about this: Talk, sing, recite something to yourself or whatever, while getting the injections. Also, I stand over a sink counter or one of their medicine carts while they inject. My friend and I ask the nurse on duty if they can go to YouTube and put on old 60's Motown songs for us. They are usually quite happy to do it. One nurse used his phone instead and actually got a better playlist for us than we could find on YouTube. I've known my friend since grade school and we grew up on 60's music, so we have a great time talking about old friends and family, the old neighborhood, the music, etc., while I get the shots. Sometimes too the nurse involved will be real chatty and tell me about his or her kids, life, etc. and that helps too. Just have some good music and fun conversation going on at the time. Anything for a distraction. I remember one time my friend, the nurse, and I were all listening to the 60's Motown, laughing, and having a real good time while the nurse injected and then the dr walked in and we all laughed and told her we were having a party and asked her if she wanted to join. She seemed nonplussed and was unimpressed and had actually just assumed we were done and she was ready to do her follow up, so she just left. We continued with our "fun" until the injections were completed.
I have had mild bruising and some soreness afterward, but not to bad. Also, the next day I am usually pretty wiped out and tired and can't do much at all. That used to last about 2 days, but I am convinced that that time frame is increasing and that now I am tired for a good week or so out of the 4 between shots. Like all of this, you will never know just how it will be for you until you actually experience it, but most people do OK, and have some downsides but not real bad.
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Claire - A quick PS: I also put lidocaine (Emla cream) all over the area to be injected, just as I did with my chemo port. Hold it all in place with Tegaderm and paper tape. It REALLY helps. Last nurse injected way high up where the lidocaine had not been, and boy, I felt the difference!
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I have been getting faslodex injections / shots for 4 years and have had no side effects to mention besides some minimal joint pain in my hands . The joint pain was much worse on femara and went away after I stopped Femara , I was on femara for 6.5 years or so . Faslodex should be room temp or slightly warmer (it's really thick !)
one injection in each hip . I hold on to a counter and take my weight off the side getting the injection by bending that knee and shifting all my weight to the opposite side .
Once in 4 years a nurse hit a nerve but that was in 2019 and they now give me the shots in my side/ upper hip area .
Hang in there !
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I've been getting faslodex since 2017. Some injections I barely feel at all. Only once was painful a few days after.They only have it out of the fridge maybe 20 minutes. They can't even push it in if it's cold. It's too thick.
As for SE They don't kick in till you're kind of deplete of estrogen. Then gradually it's what you might expect. Nothing to fear except it not working.
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Hi all.
i was recently diagnosed with stage IV breast cancer. Found a lesion in liver and something that is building up in T12.
i will be on a schema with Faslodex monthly Zoladex and kisqaly.
I had 1st Faslodex about a week ago and I have no side effects . Maybe the hot flashes hit a bit worst than what I had with letrozole.
pain on the injection spots was mild and I am super sensitive. Had tons of problems with other injections in the past.
i am having the 2nd shots next week . Finger La crossed it goes as well as the 1st
@kbl thanks for saying that urine might smell different than usual. I thought it was my idea
@claireinaz hope it goes smooth for you too
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Hi all,
lady.hope same to you; so glad we can come here to let off steam and ask questions.
Thanks all for the directions to share with the nurses. I hope that Mayo has all this down, but you never know.
I may be getting my first shot on Dec. 22nd, when my husband has his monthly degarelix (androgen deprivation), so both of us will be pretty hormone depleted overall.
I have lots of questions for my MO. I had tunnel vision the only time I met her because she gave me the bad news kind of bluntly and I "blacked out" several times during that visit.
@threetree, I had no real SEs from Aromasin, but maybe that was because it wasn't working.
I thought I heard her say it was "everywhere" but my husband said that wasn't true.
i'm dreading so much. Having to break my family's heart, my only child's heart (she lost her dad to pancreatic cancer 7 years ago), dreading the holidays-they seem so ghastly right now with all the "good cheer" stuff.
When does the feeling of imminent doom lessen a bit? I'm weighted down by it the second I wake up till I go to sleep and I'm exhausted by it most of the time.
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In 2012 with my first diagnosis, I was done with surgery and chemo by the time Christmas came. It was looking at radiation the first of the year that Christmas I just did what I could and phooey on the rest of it. I just couldn’t and my family understood So do what you can and let the rest go. You don’t have to make a huge meal check with your local grocery store and see what they can cater. We did that for Thanksgiving this year they made the turkey and all the good stuff not me and I’m doing it for Christmas , I don’t have the energy anymore with stage four and if somebody wants to get bent out of shape about that I don’t want them in my life. When does it lift it will get better. I just takes time to let it all sink in and like they say around here on these boards , once you have a plan in place, it gets better
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@claireinaz When I was diagnosed March of this year, I was all over the place. Some denial, then fatalistic outlook and finally found help with anti-depressant and sleep med. It was difficult from morning till night until I started on treatment and found improvement in scans. I say a prayer over every Ibrance pill I take and visualize the meds attacking the cancer and knocking it back. Sending hugs and prayers (if you are religious).
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Hi all, I'm scheduled for biopsy tomorrow. They'll go into my bladder and try to get a sample as well from ureter, which is where the initial problem revealed itself, the docs think. I talk to my doc Monday so hopefully she'll have the pathology by then, not that I want every hairy scary detail.
I am still just in a state of shock. It's like a nightmare I can't wake from. I know I can't sustain this high level of anxiety and fear for the long term. I appreciate the notes of reassurance.
I have been on Lexapro since Covid time, and upped my rx as soon as I found out about all this. I live in a legal marijuana state so indica gummies have really helped me sleep lately.
Claire
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Got my shots today asked nurse how they heated them. Showed me instant hot packs. Suckers really get hot!! She sprays the freezing spray and I don’t feel it.
And yes, Indiaca gummies are great for sleeping.
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Hi all,
I am scheduled for my first injection this Friday the 22nd. I have a "booster" two weeks later, then every month after that.
I wonder how long everyone (if they had them) began to feel any side effects, what they were, and what they did to relieve them.
Thanks everyone xo
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Hi Claire, I've just passed 4 years on faslodex shots. I have had little to no side effects from the shots . I do have some joint pain from the estrogen blocking or degrading BUT I take Celebrex for this which has helped a lot .
They give me the shots on the upper / outer hip these days to avoid the sciatic nerve . I hold on to and lean onto the counter and take my weight off the leg / hip getting the injection .
The nurse has offered small portable heated gel pads but I usually walk quite a bit afterwards and have heated seats in my car that I turn on for my drive home (regardless of the time of year).
The joint pain is less than the joint pain I experienced when I took femara .
Hope this info helps , hang in there while you get used to the new treatment.
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I’ve been getting the shots for about six months. I really don’t have any side effects the day after. I’m kind of wiped out a little bit but that’s it. No pain no joint pain or anything.
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At some stage early on I had bad pain around the hip area from the injections, this got better over time. Now I just feel achey for a few days, my urine smells bad and I have a weird taste in my mouth. These clear up in a few days. If I press the general area of the injection site it hurts but I feel better on this than the other medications.
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After first injection, I had flu like symptoms for 2 days and a rash. Rash could have been from Ibrance?? After second injection, no pain other then once in awhile the injection hurts if it's too close to the hip. I know it has to be upper and outer quadrant to avoid sciatica. I do have cancer in the hip and spine, so that could be the reason.
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Thanks, all, that really helps. I appreciate all of you.
Claire
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Does anybody else get all over body stiffness from this drug? I'm in another one of those spots where I feel like something is wrong and maybe I should check with the Dr, but that then everything will be fine e.g. labs, vitals, scans, etc and they won't find anything wrong. Happens a lot.
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Threetree. A couple broke ribs will do that. And the weather. Otherwise that sounds like the anxiety I had. Are you experiencing any new constant pains? That's when to talk to Dr.
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Hi Gailmary - Thanks so much for your thoughts. I have fractured ribs, but my understanding is that they are essentially healed. The new constant pains that I have seem to be this all over stiffness with muscle and joint aches and pains. I did mention it to the onc when I saw him about a week ago and he didn't seem too concerned. I told him I thought it could be the weather on top of faslodex aches and pains and he didn't disagree. Didn't exactly agree either, but again didn't seem particularly concerned. Something has really come over me since October, but all my blood work and scans have shown as "stable" and the onc says I'm doing fine. I started taking the faslodex last mid April when there is a notable improvement in the weather. Then in October, when things take that big fall and winter turn, all these aches and pains ramped up, so maybe it is the weather. I've noticed I real pattern this fall. I've just never had all over aches and pains this bad before, so I do think the faslodex is playing a big role. And yes, I can see where anxiety could kick in here too.
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Yesterday I finished the 3 Faslodex every 2-week treatments, and my next Faslodex treatment is scheduled in one month. I did not stay on Ibrance or Verzenio more than 6 months each when I was first diagnosed Jan 2020. My question is this:
11/8/23 was my last Enhertu treatment because I was coughing a lot and my tumor markers started going up. My onc was worried that I was getting pneumonitis plus my CA 27-29 tumor markers started going up during the last few Enhertu infusions, so she suggested we stop Enhertu. Tumor markers on Enhertu: 9/28/23: 73, 10/13/23: 125,
Started Faslodex and Letrozole on 11/20/23. Tumor markers on Faslodex: 11/20/23: 221, 12/19/23: 675
The 675 Tumor markers have me freaking out! For the first 2 years of my diagnosis, my tumor markers were in the 30s up to 70s.
Today I contacted my onc and said that I want to stop Faslodex immediately. We had an agreement that if Faslodex didn't work I could take Xyloda, which worked really well for me for one year, but then I had a chemical reaction and my feet blistered during our cruise when I drank a lot. I have not been on Xyloda since 12/2022.
My onc's nurse said I must stay the course and let Faslodex have a chance to work. I don't think so because I have never responded to Estrogen blockers.What would you do?
I really want to be my own advocate and listen to my gut. My gut says that my mets are only in my bones and I can't feel them, but with Tumor Marker numbers like 675, I fear that the mets will enter into my liver or other organs.
I don't think I have the heart to wait out 3 more months and see my tumor markers continue to go up. Thanks for your advice!0 -
@woodlands I would give it one more month. Sometimes when the med is working, the tumors are shedding, and it goes into the bloodstream. The Orserdu I’m on now, although it hasn’t done it with me, is an oral SERD and has been known to shoot tumor markers way up for a few months. I was on the Faslodex for over two years. It really was a good med. I know it’s scary, but maybe instead of getting off right away, you can have a scan a little earlier.
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Thank you, KBL. I will give it one more month because of your advice.
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