Faslodex Girls Thread
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Hi Threetree
There's no signature for you with your history, hormone status, etc, so I don't know how comparable our treatment patterns might be, but will share mine in the hope that it helps.
Initial dx in 2019, ER+, Her2-. Lumpectomy, radiation, anastrazole. In 5/22, in scans run because of my repeated complaints of widespread severe muscle pain, two sclerotic bone mets were found - one in the right pelvis and one in the clivus bone in the skull. While the clivus met was only 8mm, it is a small bone surrounded by critical things like the pituitary gland and optic nerves, and every radiologist on the tumor board argued strenuously for immediate radiation. That meant delaying the Kisqali that my MO recommended, although I was immediately started on Faslodex injections.
It was mid-August before I started Kisqali and my first follow up scans were done on October 2. Three new bone mets were listed, all sclerotic, as well as multiple areas of "degenerative uptake" in both knees, my left thumb, multiple areas of my spine, etc, which my MO believes is arthritis. Subsequent scans in January and just a few weeks ago have listed more sclerotic bone mets, none active. In reviewing all of the earlier scans, the additional mets were present from the very first scan, but some radiologists aren't very thorough in their reports. Since I had only been on faslodex most of that time, my conclusion was that faslodex alone had allowed my cancer to continue to spread.
In all of this, the only tumor marker that rose was CEA, which went as high as 34. It is slowly coming down, but was just above 7 at last month's blood work, so still not normal. This marker can be elevated by things other than cancer, particularly inflammation, and I have plenty of that from arthritis and the GI issues from Kisqali. I am now NEAD according to my MO, and on a 6 month scan schedule.
My MO told me that when my current tx fails, assuming I am still ER positive, the next step would be exemestane/everolimus and after that Xeloda. She said she would only recommend IV chemo if the cancer was widespread and she needed to "knock it down".
If you go to the "Have you been in a clinical trial thread" I believe that cure-ious has posted links to several studies indicating that when a combo tx that includes faslodex fails, it is the faslodex that has failed, not the other drug.
Sorry for such a long post. Hope some of it is useful. If I were in your situation, I would try to find a second opinion.
Sending positive thoughts and hugs
Eleanora
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Threetree, I'd be getting a second opinion in a hurry.
Let us know.
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Threetree,
I started Ibrance and fulvestrant in November 2019. I was stage 1 node negative in 2008 so this was 11 years after I completed all the stage 1 tx including chemo, rads and 7 yrs of femara.
I go to the same cancer ctr as you (I think) but I go to their HQ location. My oncologist in 2019 immediately tested me for the Pik3 mutation and I think today would test me for ERS1 immediately as well to determine if the cdk4-6 and this combo was the best for my situation. (the ERS1 drug wasn't avail in 2019, it was still in trials). I also remember her telling me that we had to wait to scan for 3 full months of both Ibrance and fulvestrant because they needed to give it time to work and also not make a decision before it had been a full 12 weeks.
In my case, tumor markers have never been elevated, ever. Even when I was dx stage IV. My cancer has been IDC. Some patients see fluctuation and anecdotally it seems to me that ILC patients see more tumor marker changes and correlation to progression but this is truly just my own observation (and scans don't always show progression well in er/pr+ ILC patients).
I have not had bone mets so don't know how to interpret the sclerotic changes.
If your onc can order the ERS1 test and if you haven't had the Pik3 test I would do both of those while on this 3rd month of Fulvestrant/Verzenio.
From what I have read, most patients don't go from one CDK 4-6 drug to another if they have suspected progression. I've seen them switch femara to Fulvestrant and continue BUT you are already on Fulvestrant. It seems like patients can go from a CDK4-6 to a different treatment and after 6 months or longer return to one of the CDK 4-6 drugs if the cancer is still er/pr positive. The people on here that have switched from one CDK 4-6 to another is due to low white blood cell counts on Ibrance or Kisquali and too many gastric side effects on Verzenio , so the drug looks like it is working but is too hard for the patient to tolerate.
If I remember correctly, it took a while for you to start treatment (I don't remember why). How many weeks or months were there from stage IV biopsy dx to starting treatment? I wonder if it was more than 6 weeks if you could have had some changes while waiting to start stage IV treatment? In this case it makes sense to give it at least one more month.
In my case, my first scans were 3.5 months after starting Ibrance and Fulvestrant and they showed all areas smaller with less FDG, some areas "resolved" and no new mets.
There are a lot of treatments available and I've seen people on here do really well on IV Chemo, some say it is easier to tolerate than the CDK4-6/fulvestrant . Let us know what you decide to do!
Edited to add: I think a second opinion is a good idea. I do trust that your oncologist might have a "gut feeling" and has concerns based on her experience overseeing many patients. I also would feel like one more month on it while you test for ERS1 allows more time to make sure you aren't pivoting too early. All these decisions are risk vs reward and it is so hard for us as patients to fully understand as we are not Medical Oncologists!
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Irishlove - Oh, nice to hear that I'm not the only one who longs for all my deceased relatives from time to time. The thing about it that scares me a bit is that my work over the years has taken me to visit guardianship clients residing in nursing homes and adult family homes, and whenever one of them vocally expresses how much they'd like to see their deceased family again, I've learned that most of them weren't going to be here a lot longer. With just my personal observations, it seemed to be something that people do when they will be around for less than a year (hope I'm not jinxing myself here - or you!). I've never seen anything "professional" or academic that would support that notion though. I will say that I'm not vocalizing this missing the family to others a lot, as our clients did, but it has got me thinking for sure.
Interesting that you too have heard 4-6 months before getting decent scan results. Nice to know that you though sclerotic was a good thing too once on treatment. I've seen where others have said that here too. I think I am going to look around for a 2nd opinion. This oncologist that I've been seeing will be out on maternity leave soon and I think the next time I go there I will see one of her colleagues, so maybe they can add their thoughts too, although in the past whenever I've had a "sub" doctor there, the just make sure you're stable, etc., and don't deviate from anything the main doctor has been doing. I will also check at another local hospital that for years was known as the best place for cancer. The place I go now is currently considered the dominant one, but the other place still does lots of good cancer work. Thanks so much for your comments. They are much appreciated.
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Threetree
I have been on Fulvestrant and Ibrance for 20 cycles, sclerotic response is considered as healing response, also my first scan was done after 5 months which showed very good response so I have been asked to continue. Hope this helps
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Thank you all for chiming in - it is really helpful to me. I always just need to get a lot of input when I feel I'm between a rock and hard place - and this time it could mean my life!
Eleanora - I haven't put my history on here because I've always had mixed feelings about it, but then when BCO had the data breach, that did it for me. I was diagnosed as IDC, stage 3, grade 2, 95% ER/PR+, no nodes and no metastases back in November of 2018. I did neoadjuvant AC-T, had mastectomy, then did proton radiation, moved on with Letrozole in January of 2020, but I became metastatic on that last January (well at least that's when the ER saw it all on scans). Reading your story is helpful and gives me some things to think about. Interesting that your dr told you about other things that light up on bone scans. I asked my dr about that and she said that arthritis usually lights up the joints, and that she just didn't think this was anything but cancer at work. I've heard that just plain old inflammation of any kind can light up too. I'm still not 100% convinced. Thanks too for the reference to Cure-ious. I noticed that she just left a response for me on the Faslodex thread, so I will definitely pursue the idea of Faslodex being the likely culprit a bit more. Congratulations on being NEAD! Also, no need to apologize for the long post. Sometimes it's all you can do, and I've sure done my share of long posting too.
GailMary - Thanks for your opinion - and it is so emphatic. I think I will try to get another opinion from another facility. Sometimes I just don't want to accept what I'm hearing and start to argue or look around for alternative possibilities to things, but I'm just not sure that's the case here.
AprilGirl1 - Yes, I do think we go to the same facility, but different locations. So far I have not had any genetic tests and have a question in to the oncologist about whether some of the blood they took on Friday will be used for the ESR1 mutation test. She had said they "could" do it, but I don't know if they are actually in the process. I'll ask about the Pik3 also. She will be out on maternity leave beginning in the next couple/few weeks, and I believe that the next time I go there to see any dr, it will be a "sub". I'm wondering if that person will venture to offer any opinions at all. I'm also thinking seriously of getting another opinion from the old big hospital on "pill hill" that used to be the best place in town to go for cancer treatment. Now the place we go seems to be thought of as best, but the other place still does good work as far as I know. You seem to be another one that heard that you need more than 2 or 2.5 months to get a meaningful scan result. That really matters to me. They saw the mets for the first time in January and then the confirmational biopsy was done March 30. I started Faslodex on April 19, so it was 13 weeks to the scan (a little more than I thought), and started Verzenio on May 4, so it was 10 weeks until the scan. I still question whether that was time enough. I can certainly see where some think IV chemo is easier than these CDK4/6 and anti estrogen combos, but it's my understanding too that it's kind of a "last hope" sort of thing at this point. I agree that the oncologist could just have some sort of hunch from her experience that this isn't going to work, but if she does, she's not real good/clear about communicating it. I just find that she often says and does things that just don't align with what I hear and read about elsewhere, but that doesn't necessarily mean she's wrong. She's just very "standard of care", by the book, etc. and wants her patients to be too. She doesn't seem to like a lot of questions or "wonderings" like I have. She's a nice person and has a couple of little kids at home, and is now expecting a new one soon, so I think she probably is pretty drained and maybe even a bit "hormonal" herself right now, so I try to give her the benefit of the doubt, and hang in there with her, but I do think I need to hear from another oncologist or two, before I could get comfortable with any new treatment plan. Thanks so much, for taking so much time to offer your thoughts!
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Malebreastc - Yes, your comment is very helpful, and thank you so much! I had come to assume the sclerotic thing meant healing, but the onc said that since the bone scan was lighting up so much, that wouldn't necessarily be true, but the radiologist report referred to the sclerotic things as "filling in the existing mets" so to speak. Very interesting that you did not get a scan until 5 months. Wow. I think I should really try for more time.
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Three tree, in case you are interested l, I see Dr Symonds at SCCA. She's young but she is smart . My 2008 SCCA oncologist retired so in 2019 I saw Dr Vinayak who was amazing but she had a medical leave and returned to only do research :/ So, Symonds is new to me but she seems sharp. To be honest I've have stable disease since I've seen her so I don't know how good she is to work with during a change in treatment but she's a pretty good communicator . She also lets me do my injections and blood work at a closer clinic so i only see her when I have scans . I've found her to be a good listener.
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@irishlove and @threetree Hi girls, I noticed this Active topics and saw Fasoldex girls and decided to jump on and get some information. After reading your comments I want to say yes I get very “dark” in my head and feel depressed the 3 or 4 days after and I also get my Xgeva shot that day too so I was wondering if it’s these shots 3 shots total or just the long hot stage 4 summer. I’ve been trying to browse other forums under “Active topics” , so nice to see you here too along with Mel’s Livingroom🤗💗
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Shanagirl - Nice to see you here. I think the Faslodex really causes the dark thoughts. I'm supposed to start Zometa soon and I've been dreading it, because they say they usually give it on the same day as the Faslodex injections, and I too am wondering if that won't just be "too much" at a time. I can feel pretty awful in more ways than one for a few days after the Faslodex shot, and I understand that the Zometa can make you feel pretty awful for a few days after also. I imagine the Xgeva is similar. I suppose there is an argument for feeling yucky with both for the same few days, rather than spreading it around and feeling even more days of awful.
I too think there is something about a "long hot stage 4 summer" (I like that term) that is no fun - and we haven't had the heat here that so many other places have had. I've also got lymphedema in my arm and it has swollen up terribly with the summer weather. It always does swell in the summer, but not like this. All last fall, winter, and spring you would have thought it had gone away, but I'm also wondering if the Faslodex isn't doing something to make it worse. I read that low estrogen levels can cause a slow down in lymph drainage, along with all those other many things that it does.
Edit: Meant to add that I think Mel's living room is a great thing, but I simply can't keep up with everyone on that thread. So much always going on, so I just chime in here and there.
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AprilGirl1 - I looked up your Dr. Symonds and she is a possibility, thanks for the name. I'm not sure if SCCA lets people switch around or not within the system, or to ask for 2nd opinions from other dr's there, etc. I think I might call them tomorrow and ask. I have mixed feelings about the young age with some of these dr's. Sometimes they can still seem "more kid" and "less worldly" than the older ones, but at the same time, they are usually much more gung ho about their work and still full of idealism about what is possible, and I like that. It looks like Dr. Symonds is board certified in Internal Medicine, but not quite yet in Oncology/Hematology. I've added her name to my list of local people to possibly pursue.
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@threetree I get the Zometa infusion once a month and the flurvescent every two weeks. But they are kind enough to space the shots out at least 3 days after Zometa. I'm anxious to se if they move Zometa to every three months soon. Also anxious to see if they move flurvescent to every month, as I noticed some posters have that routine after treatment of xx amount of months. Well at least we don't have a cat coming into our retirement home bedroom and climbing up on our bed. I had read a story years ago that the resident cat would visit and within a day or so, the patient would pass. I told my cat no jumping on my bed. lol
@shanagirl Hi gal. It's always good to see you and hope you are doing well. I'm glad to hear I'm not losing my mind about the dark thoughts. Here we are fighting to stay alive and then dealing with such darkness.
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Irishlove - That does sound different, to be getting the Fulvestrant every 2 weeks. Maybe you get a lower dose 2X a month, rather than the full dose once a month? I only know about the dosing as being every 2 weeks for the first 3 weeks (loading dose), and then once a month afterward.
Oh your story about the cat! I remember reading about that years ago, and I've heard more since then. I think it's for real, i.e. cats know when people are about ready to go and they curl up with them. I took my father to the hospital 10 days before he died, and while he was at the hospital, his cat would sit all over his bath robe and then go curl up on his bed and on a spot where he sat on the couch not long before he died. He wasn't even there for the final days, but the cat seemed to know and that behavior for her was very different than usual. She usually never got on his bed. Nursing home people have told me that they have resident cats too that will do that. Well, I don't have a cat, so I don't have to worry about getting "spooked" that way.
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Threetree, Dr. Symonds has completed a fellowship in Hemotology-Oncology at University of Washington and is listed as a Medical Oncologist. She is young (or looks it!). I understand there is a distinction of board certified or not and can ask her when I see her on 08/10.
link to her bio at Fred Hutch. I really liked Dr. Rinn at Swedish but she retired.
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AprilGirl1 - Thanks for the additional info. I did look at her bio earlier today and it looks good basically. I got a sense that these "fellowships" might mean they are on the way to board certification. She is board certified in Internal Medicine and she got that in 2019, so I'm presuming she is close to getting board certified in Oncology/Hematology.
I saw a similar bio for a young doctor at Swedish, and she too is a "fellow" in Oncology/Hematology, but not board certified. In her case she has expressed a special interest in stage 4 metastatic breast cancer and helping patients understand and get all of the best treatment options, so she looked like an option too. There's also another dr at Swedish that I was going to ask them about. Older, with more experience, but I can't tell if she actually sees patients or not or if she is just interested in research. I've got to find out more about her too.
If I go somewhere other than where I go now, I'll have to really add to the driving. Right now I just go 5 or 10 minutes up the hill from where I live and it's pretty easy. Anywhere else and I'll have to get deeper into the city with more traffic and parking issues. I'm going to ask Fred Hutch if they allow switching and/or 2nd opinions within their system.
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@irishlove sorry, i meant to type every 4 weeks i get the 2 shots of Fasoldex in the butt cheeks, and the one Xgeva in the back of my upper right arm.I had them last Monday.
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I noticed last shots triggered a massive migraine about 2 hours afterwards. Not part of this thread, but I also noticed this time the Zometa infusion was difficult for 3 days. Only had a problem with the first shot. Any chance the depletion of estrogen is triggering this MS attack? I do know woman lie with dormant MS and it can be triggered during child birth due to hormone changes. Has anyone dealt with a doctor that can help to manage this? MY QOL sucks right now.
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Has anyone on fulvestrant had symptoms of peripheral neuropathy, i.e. limb weakness, tingling, agitation and more? I've had a real bad few days with tingling limbs and muscle weakness. Urgent care thought it was an electrolyte issue due to low sodium, and so did the ER, but that theory hasn't played out very well. I had told them I wondered if it was a spine issue like a pinched nerve or something, or side effects from the drugs. None of them seemed to think it was a big spine thing, although the ER dr did finally refer me to a spinal place to see if they might know more. I've had these symptoms before and sometimes they were due to electrolyte imbalances and another time the dr thought they were drug side effects. They were just much more pronounced and lasted longer though, this time. Fulvestrant side effects do not list all this numbness and tingling and weakness particularly, but if you google, "does low estrogen cause numbness, tingling, and muscle weakness" you get stuff that comes up that says yes. Just wondering if any others have had any of these kinds of symptoms (along with draining fatigue) that they could chalk up to fulvestrant or a fulvestrant/verzenio combo. Thanks.
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Absolutely. I've had some of those issues. I take Ibrance/Fulvestant. At times, I have weakness and generally feel bad and fatigued.
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Thank you, Greatly. This helps me know that I'm not way off track thinking that this might be the drugs.
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I'm back again wondering about leg stiffness, numbness-ish, etc. after Faslodex shots. I got my shots on the 4th and now today (the 7th), I've got these very stiff and almost numb legs that I am coming to associate strongly with the shots, as it's happened before. I also got the flu and pneumonia shots on the same day, but I think the side effects from those have pretty much worn off. This leg stiffness/numbness usually goes away gradually, the longer it's been since the shots, but over all I have had a lot more numbness and sciatica like symptoms in my behind and legs ever since I started these shots. Sometimes now even when I just sit and it's been 2-3 weeks since I've had the shots, I can get a numb behind and legs after sitting at the computer for awhile. I never used to get that, even though I know it isn't uncommon to get numb after sitting. I'm going to bring this up with the onc next time I see him (the 18th?), but in the meantime, I'd love to hear from any of you taking this drug who might have any comments or thoughts on these symptoms. Does anyone else experience this? When is it just an annoying side effect vs possible serious nerve damage? Thanks all.
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@threetree I noticed a lot of burning pain in base of spine, buttocks and back of legs. Now I'm not sure if Faslodex could be responsible or not. But thought I'd mention it.
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Hi Irishlove - Thanks for mentioning your experience, it is helpful. Looks like you've been on Faslodex about as long as I have. I understand that just plain low estrogen from any cause can cause some of these symptoms, but I really find it to be extra strong and worrisome within a few days of getting the shots. So far it's always gradually gone away, but while I'm experiencing it, I keep freaking out about "what if it's permanent" or going to continue to get worse.
By the way - where is your "Irishlove" from anyway? I saw in another post that you were born and raised outside of Philadelphia. I have some Irish ancestry on my father's side that goes back to Hazleton, PA, which I believe is northeast of Philly, but not sure just how far. I understand that some of my relatives/ancestors migrated into Philadelphia proper, along with many other places, like Washington, D.C. where my grandfather wound up. Just curious, thanks.
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The numbness and sciatica could be from where they’re administering the shot. It can hit the sciatic nerve. It sounds like what they’re doing. I just wanted to let you know.
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kbl - Thanks very much. I've wondered about the sciatic nerve issue too. One of the nurses told me that they actually have no control over whether they hit it or not, as it is in a slightly different place on everyone. She said all they can do is their best to get the shots in the overall best location to avoid the nerve. They do this as a "ventrogluteal" shot now, whereas they used to do "dorsogluteal". I was told that the ventrogluteal method is considered the safest these days, and less likely to hit the sciatic nerve. I'm going to ask them about it at my next follow up though.
I'm also beginning to wonder about an electrolyte imbalance as another possibility. I have ongoing problems with this and I had forgotten about it and that some of the symptoms can be numbness and tingling in limbs. I've also had some muscle cramps which come with the electrolyte problems. They actually tell me I drink too much water. I had a bad fall 3 weeks ago and ever since then I haven't really been out walking like I usually do, due to the pain of injuries, and I also forgot all about them having told me to drink less water. Yesterday, I tried to get back in the swing a bit and got a mile walk in and cut back on water. By the end of the day, my legs seemed a bit less numb and I think I felt better all over just to get some sort of exercise in too. I'm going to have another round of less liquid and a small (one mile) walk again today and see if it doesn't continue to help. All this said though, it still doesn't explain why this all happens more within a few days of getting the shots, so there's still that sciatic nerve stuff to think about too.
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@threetree I’m sorry you suffer with that. It’s not often you hear someone drinking too much water. I had the shots for 25 months and never got numbness, and, thankfully, they didn’t hit my sciatic. I hope you can get answers. After a car accident, I had excruciating pain down my sciatic and had a horrible time putting my foot on the gas pedal. Sciatic pain is no joke.
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Wondering if anyone else has worse mood swings and hot flashes with Faslodex. I think I do. Moody, depressed, mad, lethargic, fatigue. I've had all that already too from letrozole, Verzenio, goserelin, thyroid but it's getting worse. Then add the SAD from getting dark earlier. I've been doing all the things, exercise every day, visit with family and friends. Usually I can pull myself out of it but the black hole is winning lately. I'll tell my doctor but years ago the last time I tried antidepressants Zoloft made me gain a lot of weight and didn't help me at all. This time is different and much worse but anyway I don't want to throw a pill at it and just gain weight.
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Mkestrel. The blackhole is winning here too. My sister would say your not exercising enough. Though she doesn't understand the lack of estrogen leads to depression often. Issues with thyroid can too. Etc. Do you have someplace near to hike when you can't get to the mountains. I know my happy place is our woods across the street. I should go there more often. Can't help with the hotflashes.
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There are parks I go to a lot and I have a bike route I do. I miss the greenbelt by the river but it's 30 miles away. I'm so sore from this weekend lol I can't move. I'm trying to get back into doing a workout in the house when it's too dark out. I will plan a routine of moving, art and music. Not so much baking perhaps. I'm also going to find a better headlight do I can keep walking when it's late. I have numb feet and bad proprioception. I do best with two hiking sticks. My back hurts more if I'm watching my feet. Anyway I would love to walk in your woods. Are they tick free? Haha
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mkestrel - First, really liked the photos you posted earlier. Lovely area and scenery.
Yes, I absolutely believe that Faslodex causes mood swings, depression, etc. Letrozole did too for me; it's the estrogen deprivation that these drugs bring on. We really need that estrogen! I too deal with SAD - always have, way before cancer. Have you tried a "happy light"? It really helps me a lot and I actually use it year round. I just set the timer for much less time in the summer and adjust as the year goes around with the largest amount of time during the winter months of course. Gosh, I think it's been about 20 years that I've been using both the happy light and SAM-E for my mood problems and they are the only things that really seem to help me, along with daily walks - the ones you take should be really good for your depression. I think the anti-estrogen drugs have just made a long standing problem of mine worse, and it is still the same old things I've done in the past that seem to help, but I still notice a difference, i.e. worse symptoms since the cancer drugs.
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