Faslodex Girls Thread
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gailmary - Thank you for the encouragement. I was just diagnosed Oct 25, 2022. Stage 4...Mets in Liver and lung. Doctor started me on Faslodex and Ibrance. I have not had a scan yet to see if I am responding to this treatment
I have to say I am thankful for all of the tips that have been posted on how to deal with the faslodex injections. They really did help!!! I think the Ibrance is giving me more issues than the Faslodex. But with the faslodex I do make sure the nurse giving the injection is willing and able to meet all my demands. LOL. Make sure tubes are warm (i check too), Count one two three and then say take a deep breath as you are injecting, Push slowly if I say owww, stop until I say continue. Lastly, you need to sit not squat while you are injecting. Squatting makes the needle move around more. Now I just wish I could get the same nurse each time.
Sometimes I get like welts or hardness around the injection site. Any thoughts on what to about these?
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luvdbyhim, I also get those lumps sometimes. It takes a few weeks for them to go away. I notice if they put it higher toward my hip, I don’t get them as bad. The new nurse I had this time did a great job. Hardly felt anything.
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luvdbyhim - I sometimes use a muscle roller afterwards to try to reduce the the lumps.
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kbl and Cowgal - good tips thank you!
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gigil/everyone that's had radiation.
I meant to respond earlier.
Who else had a radiation oncologist tell them that radiation would weaken their bones.????
I have not, in fact exactly the opposite. They said it's harder now than ever because it was radiated. Mine was near rhe breaking point and within a month of last radiation treatment to humerus they said to do whatever i want and I have.
I hate it when different Dr's tell us different things. How do you set them straight. Like my primary told me nobody is diagnosed with lung mets just cause they cough. BS.
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Does anyone else get tired after their shots? I am wondering if it is the meds or if it is I get worked up before I go? I have had issues with previous faslodex treatments. I am really tired that day and then the next day I can't hardly keep my eyes open.
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I get Faslodex shots on the same day as my Xgeva every month. I usually get them in the morning and most of that afternoon I have joint pain and am really exhausted. I lose most of injection day and the following day to fatigue and stiffness so I try to schedule it so I have that recovery time.
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I also get my monthly XGEVA and Faslodex shots on the same day each month in the morning. I go to work afterwards but I get tired for a couple of days from them and get more achy than normal.
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Anybody only on Faslodex, and if so, how long? I've been on it 17 months with Xeloda, but I'm with a new doc, who took my case to the tumor board, and they unanimously thought I should not be on Xeloda because it's not protocol. I've been on Faslodex alone for a little under one month, too early to tell how it’s doing alone.
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Kbl
I think i was 3 yrs on faslodex alone. Tiny lung mets now so make that 4 yrs. Prior to that I was taking letrezole WITH it AND Xgeva 2 yrs.plus 1 yr ibrance. With the new lung mets I'd like to go back to ibrance again but he doesn't think I need it. Tiny nodules not biopsied and not growing appear dead already. Huh??
With all your mets maybe it was a good idea. Just cause its not standard protocol doesnt mean you cant do it. Did insurance cover it
Gailmary
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Gailmary, thank you for the info. Yes, insurance covered it. I’m okay with just trying Faslodex on its own. I had the cancer in three parts of my stomach, and now it only shows in one spot. I will continue to get endoscopies yearly unless I start to have symptoms again. I will know when and if it comes back. I can’t eat and lose weight really quickly. That’s what happened when I was taking Ibrance and Letrozole after two years. As far as spread, I’m most concerned it will go to my peritoneum or retroperitoneum. They keep pointing out stuff on my kidneys, yet I had a kidney scan for suspected hydronephrosis, and it was normal. This scan says I have mild fullness of the both kidneys and pelvis. My kidney numbers are also normal. This lobular keeps people guessing.
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Hello all - maybe this thread can be revived a bit? Also, I noticed it was about "Faslodex Girls". What about the boys we have here too? Let's not forget them.
I got my 3rd "loading dose" of fulvestrant yesterday and I am just completely wiped out from it. The first two injections sessions weren't too bad, and I only felt a little low the day after the shots. Wow, today, I had to just sit up in bed most of the day; getting up for a few minutes every now and then. As others have noted here, I too strongly believe that this drug really aggravates any existing osteoarthritis/arthritis/bone mets lesions, and fractures. I've been nothing but one big weak, stiff, tingling, muscle, joint, and bone pain all day long; my whole body - a little help from Tylenol and Advil, and that's when I can be up and around, but again the initial 2 doses didn't do anything like this to me. This was also the first time I had a problem with the injection. This morning I noticed about a 3X5 inch deep red "blob" on my right hip. I'm assuming it will calm down and go away on it's own, but it was a shock to see it. I'm hoping things will settle out and now that these shots will be once month, it won't be so bad. I also started Verzenio over the last two weeks, and I believe that that too, aggravates any existing muscle, joint, or bone pain. Aside from all this pain, I think I would be able to handle these two drugs pretty well, as I don't really have any of the other side effects that people experience. Just keep wondering how I'm going to get some serious pain relief with all of this. I'm trying to get into the narcotic stuff if I can at all help it. I don't want to be "doped up".
Well, I was just glad to find this thread, as hadn't seen anything exclusively about Faslodex before. I read through many pages of the thread today, and I want to thank all of you who have contributed here. Your comments have really helped me to get a better handle on this drug and to also see that others have had some similar troubles. Here's hopin' we can all hang in there!
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Threetree, perhaps it's the new platform that nobody responded. They never saw it. There is still good info in past pages.
I hope by now your pain has subsided. I wonder if the verzenio made any difference. I didn't have that problem. In fact I far prefer getting the infections to popping pills. In 6 years on faslodex I might have had a red spot on my rump all of 3 times.
In all that I've read I never saw that faslodex can irritate existing arthritis, muscle, joint or bone pain. Maybe my interpretation was different.
Here's hoping it gets easier for you and you get 6 years too, at least.
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Threetree, sorry you’re having so much pain. I too have a lot of pain, but it was like this before I had Faslodex, so I wouldn’t be able to tell what’s causing it. I’ve been on this 21 months. I’ve been on it since February exclusively. I’d like to hear stories of others getting long-term on Faslodex. This is my second line.
I hope your blob has cleared up. There have been times I’ve had a huge lump and bruise, but it’s usually when I get the person who does it right into my butt cheek instead of closer to the hip. I am at a different place now, and I appreciate they do it by the hip instead.
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Gailmary - Yes, I think the new platform is keeping a whole lot of people away for sure. I don't come as often myself. That means an extra thanks to you and Kbl for responding! Yes, I did get better. That first day after the shot was the worst and by evening I could tell I was moving forward. The next day was much better and I even got a walk in. This was the 3rd nurse for as many shots, and I think there might have been a "technique" issue. She's a wonderful person, so I hate to complain, but this time the shot was a bit more painful than the other 2 times, and then I got that huge red spot afterward. She did do the ventrogluteal method though, which is the hip one, so that part was good. When I was reading back through the pages of this thread, there were a few who said they were convinced that this stuff aggravates existing arthritis, etc., and I do believe it. Thanks so much and so good for you to have done so well with this for so long. I hope to high heaven that I can get the same 6 years (and more!) out of this drug that you have gotten. Wow, that's inspirational indeed - keep going!
Kbl - The pain did get better after a couple of days, then I tried the Verzenio again though, and it ramped up some more. I too have had some of this pain before, and I know what you mean about not always knowing what's what, but ever since I started these drugs, the pain I've had just gets so much more intense now. It's not really new pain, but exacerbated pain. Your 21 months is a good run so far, and it's very encouraging to hear about. My big red blob is now a big black and blue bruise type looking thing, but it is fading more and more every day. My first nurse gave the shot the "old fashioned way" in the ventrogluteal area, but that was the best one so far - she's always given great shots. The last 2 were given by different nurses and they did do it in the hip area, which I know is far better in avoiding the sciatic nerve, so that part was good. Kbl, thank you so much for your comment. It's really helpful; that old "just knowing you're not alone" thing. I really appreciate your post.
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Threetree, I’m so glad that it’s getting better. I’m also glad that I could help in any way. I really hate when I get a nurse who barely causes any pain and then get one who has no clue. We should get poked by four different nurses and then get a choice of which one is best for us. Wouldn’t that be awesome? I can dream. Lol.
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Kbl - I totally agree about the nurses and need for choice! And yes, you are always a help, thanks again.
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Anybody add ibrance or other targeted therapy to faslodex after a little progression. MO says the faslodex is doing the job alone yet now mets to lungs to. But not getting bigger after a year. Due for scans in June. Should I argue for ibrance? MO says it triggered my gall stones. Hogwash!, I say. He said they would be a problem soon. That was a year before. 2nd opinion if he doesn't agree?
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Gailmary, I think a second opinion is a good idea. I wonder if you could start on a lower dose of Ibrance? There are quite a few of us on 75mg. I just had my faslodex injections today and started cycle 42 or 43 of Ibrance. How long were you on Ibrance before when you had gall stones?
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April, that's a good idea. I was on it 11 months. When he put me on ithe said 1 year only to help stabilize the one met I had. Then he said he could always addit back if my tumor markers went up. They never did.
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@gailmary I was never on just Faslodex, I have always been on the combo of Verzenio/Faslodex as a first line of treatment so I can't speak to Ibrance. My doctor at the time was afraid Ibrance would drop my counts too far. I've been stable on this combo for 3.5 years. Knock on wood, I have not had a progression since my stage IV diagnosis in 2019. While my doctor doesn't say I'm NED I am considered stable. I don't think it's ever a bad idea to get a second opinion if you have concerns about proposed treatments though.
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Thanks eMac,
No new treatments were proposed as my scans were great. No longer suspects progression or if there was the start of it then faslodex alone is holding them back.
Plus 6 years later and bone lesion continues to shrink!
I should add derils to my profile. I have a slow grade 1 cancer.
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Just wondering if others didn't experience side effects until a year or more after starting faslodex. I don't mean those from low/no estrogen.
Lately I've been so tired which I can blame several things . But also much brain fog. I can't multi task like I used to.
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Gailmary - From what I know the brain fog is from the low estrogen. I also cannot multi task and I first encountered that problem with Letrozole. Had generally bad brain fog with it. Now with Faslodex, my brain fog and inability to focus and concentrate is even worse than it was with Letrozole.
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GailMary - Like you I have several reasons for brain fog and increasing fatigue. I have been on Faslodex since 2020 and thinking back, I do think the longer I have been on it the more I noticed symptoms. I primarily get very stiff and fatigued and have noticed significant "chemo brain" like symptoms where I can't find a word or use the wrong word. It was suggested to me by one of the infusion nurses to take Claritin and so I did this last time for a few days before and after my injections. Maybe it's placebo effect but I do think it helped.
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Thanks ladies. I'll have to try the Claritin. I never connected the brain fog to low estrogen. It's been a long time since menopause. Yikes 40 years. And 6 yrs of faslodex. Even gynecologist says letrezole is like going through menopause again. And Faslodex is worse in that regard.
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Hi folks. Hope everyone is stable or even better! I have a quick question about Faslodex. Twice in the last two weeks I found myself very concerned about my mental health. This just started a few days after injection. I'm not considering anything drastic, but found myself going dark. Plus I have pressure in my head that's overwhelming me. We are gonna address that with an MRI. Just wondering if anyone has had such side effects/concerns? I know we are depleting estrogen and my poor brain is very unhappy about something.
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Irishlove - I've been on Fulvestrant now for about 3 months and I have indeed noticed more depressive symptoms than before. In my case most anything I hear about that is negative makes me sad and weepy, and I also find that I get this terrible longing to see my parents, who've been gone for years, again (I'm 70 for heaven's sake!). When I took Letrozole I had some of this, but it's much worse with the Fulvestrant. I agree with you totally that this estrogen deprivation is a real bad thing! We nee our estrogen for sure.
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I previously posted this on the Verzenio for stage IV thread, but thought I'd also post it here too, as it is about both Verzenio and Faslodex. I'm not sure just which of the two drugs is causing the problem here, and the oncologist says she would just stop both, and had nothing to say about determining which drug was the "failing" one, so that I might at least keep one of them. Anyway, it's all below and I'd very much appreciate anyone's thoughts about all of this. Thanks.:
Anybody out there? I realize that so many less people visit this forum since the switchover now, and that there is a much smaller pool of people to comment, but if any of you out there see this and have anything to say, I would greatly appreciate any thoughts, comments, or suggestions.
I've been on Verzenio (150mgX2) now for about 12 weeks (close to 3 months) and Fulvestrant for a little more than 3 months. I had the first scans to check the effectiveness a little less than two weeks ago, so it had been about 3 months of Faslodex and 2.5 months of Verzenio at scan time. The results were really confusing to me because the CT noted some things better, but some things worse. It also noted that my bone mets were "sclerotizing". I initially thought that was bad, because I'd heard before that there are 2 types of bone mets; osteolytic and sclerotic. I initially thought the sclerotic thing meant I was getting new and different bone mets (I've had osteolytic), but after reading around, it looks like bone mets that become "sclerotic" on treatment, can be a good thing and that it means the erosion of the lytic lesions are filling in. Then the bone scan results said that a lot of the same old things lit up plus there were a couple of new spots. I didn't think these results were great, and decided it was a mixed bag and didn't know what to think, but thought maybe it was still too early to tell how well the drugs are working.
Saw the oncologist yesterday and she didn't even think it was a "mixed bag". She thought it showed that the drugs aren't working and started talking about possible IV chemo. She said that the sclerotic things seen on the CT weren't necessarily a good thing given that the bone scan lit up so much. I told her how I'd heard that it can take 3-6 months sometimes to see if this combo is working and she said 2 months was enough. She also said she could do a test for the ESR1 mutation and I might be able to switch to Elacestrant. I asked her if we couldn't stay the course a while longer and she reluctantly agreed to scans again in 1 more month. She also told me that I could not go from Verzenio to Ibrance or Kisqali because if one didn't work, the others won't either. I get that they are related drugs, but I have seen on here where many have done OK with a switch, at least for awhile, so again, I'm not really on the same page with her.
Additionally, my tumor markers have improved notably, so I don't understand why the tumor markers would look so good, yet the scans don't look very good. The CA 15-3 has always been in the normal range, but went from almost out of normal range down to low normal. The CEA was above normal and climbing and is now down to low normal.
I would greatly appreciate any input from any of you about this issue, especially hearing how long it took for you to see positive results on scans from this drug combo. I'd also like to know what anyone might have to say about tumor marker results in relation to scan results, the possibility of going from Verzenio to a related drug like Ibrance or Kisqali, and whether you think a second opinion might be warranted in this situation. Also, I'd be interested in any comments or thoughts related to any of this. I hadn't expected this and assumed that I would at least get some sort of time on this combo, but that's not what this oncologist seems to be seeing. I'm really depressed and scared about the idea of just moving so fast to IV chemo. Thanks to all for reading this long post, and for any thoughts you might have.
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@threetree Ah, thanks for your commenting and I am close in age to you. Yes I understand missing your parents. Each day I miss my Grandparents, who raised myself and 3 other siblings. Then I see a pic of my fav dog and get all teary eyed and start missing my pack.
I have a limited time on Flurvescent but I can say in past reading and MO comments, they usually give the drugs 4-6 months before making a decision on efficacy. Also, I understood sclerotic was a good thing. Maybe we need someone with more time on this drug and knowledge to chime in. I hear you about MO making too quick of a decision and questioning chemo. I would definetly ask for a second opinion.
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