Faslodex Girls Thread
Comments
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Amel
I've been on faslodex alone for maybe 5 years. The 2 yrs prior I was on it with femara and ibrance. Maybe working so well cause my Er was 95+. And a grade 1 cancer. Nobody knows. It's a mystery.
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gailmary
Wow that is long time! Gived me hope, thank you!
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Faslodex girls and boys - Do any of you find that the summer heat makes side effects worse? I got my latest shots last Wednesday and I've just had worsening side effects ever since. It's warmer here these days, since it's summer, but not "crazy warm". I'm talking about approx 80 degrees and not super bad humidity. I walk routinely several days a week, usually late morning, and I'm out for about 40 to 50 minutes. When I get back home I usually have a glass of water and rest for about 15-20 minutes and then I'm "normal" again. Well, ever since my shots this last week, my walk is really difficult and when I come back I almost don't recover at all, even with the usual water and rest break. The next day, every muscle, joint, and bone in my body seems to hurt more and I remain very fatigued, with. The walks have been getting harder and shorter over the days, and I had to completely take the day off yesterday and just sit up with my feet up and do pretty much nothing but play around on my phone. I had reached the point where I couldn't even stand or sit for very long, without having to at least just sit up in bed. Even sitting in a chair with my feet on the floor seemed like too much and I felt too weak and achy all over to manage it. My scans have been stable, all my vitals remain normal, and I've been on this Verzenio/Faslodex/Zometa combo for just slightly more than a year now. It got a little scary to find myself so weak, fatigued, and achy, but then I remembered how I had just had the shots and sometimes the side effects can be worse than others. We also got a bit of a heat wave, that went up to almost 100 for a day last week, but it's now only getting to the mid 80's only - always very clear and sunny. The heat/weather is the one thing that is different from the last many months, so I'm wondering if it doesn't make that much of a serious difference. Have only been up for a couple of hours now, so waiting to see what today brings after taking all day total rest yesterday. Do any of the rest of you ever get this wiped out after your shots?
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Threetree, I have been unable to walk like you for a long time, so I applaud your effort. I have had exceptional weakness/achiness for about a weak now, so much so that I called the triage nurse. I am wondering whether I caught a mild virus or whether it is just the Faslodex like you said although I am three weeks in now. I get another one next Monday and am already dreading it. So yes, I get that way too.
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Threetree, it's been harder this summer. Particularly perspiring more heavily. MO said it's the lack of estrogen from faslodex. Saw MO today for shots. I'll see the next few days how much worse I feel. Definitely achy but the storms are aggravating the arthritis.
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Intolight - Thanks so much for taking the time to comment. I am also sorry that you too, are having problems that might be chalked up to faslodex. I hope that your shots yesterday went OK and that you are not in any more of a mess! Interesting that you did call the nurse. I have considered calling, but have tried to to hold off. I check my basic vitals (temp, O2, heart rate, and BP) here at home and they are all fine. I've pretty much learned that if they are fine, I'm not in a terrible crisis and if I go to urgent care or the ER at times like this, they really don't find anything wrong, so I'm still waiting this out at this point, but did almost call myself. Like you, I've also wondered if this could be a virus or Covid (had something similar around the 4th of July - if I remember you did too). I didn't do a Covid test, because they have always turned up negative the last few times I've wondered and taken the test. This does feel very much like a virus or something though. Yesterday, I thought I might be getting a little better, but then this morning, I woke up and was lightheaded, have stomach pain, and body aches, weakness, etc. all over again. It still hasn't been a week yet since the shots last Wednesday, so still assuming that is the problem, plus the warmer weather added in. I googled some and what I see there says that yes indeed, all of this can be from Faslodex/low estrogen, so for now, I'm going to continue to go with this. Your comments about getting similar symptoms really helps me feel like "it's not just me" and that I may well be right to chalk this up to the shots. Please feel better soon yourself, and know that I am thinking of you!
Gailmary - Always appreciate your remarks; thanks for your thoughts. Interesting that you are noticing a connection with the heat also. As with Intolight, I hope your recent shots have gone OK and that you are not feeling any worse! Yes, I think it is largely a low estrogen thing. You know, you can look up the side effects of Faslodex and some of these things are listed, but not all of them. However, if you google things like, "Does low estrogen cause fatigue, diarrhea, and body aches" the answers will come back with a resounding "yes". It is just amazing how much good estrogen normally does in our bodies and how positively miserable we can be without much. I do think this is largely from the low estrogen that the fulvestrant causes, as your MO said. Wishing you much improved symptoms and better days ahead!
Both of you have helped to reassure me and feel like I'm not alone. I just wish we could all get a big break! This is just so wearing and so never ending! I just appreciate so much that we can get support here from each other, as those who aren't going through this too have no way at all to truly understand. They can care and be sympathetic, but they just can't "get it" even if they want to.
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No 3tree. You are not alone in this. I think I regret most about this forum is that we can't give real hugs.
After shots yesterday I do feel more tired than usual. I just want to nap. 1 wasn't enough. Heat does that too though. Housework will have to wait. Nothing new.
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Gailmary - Glad to hear that your shots weren't too bad. Tired is one thing; increased aches and pains are another! None of it is any fun though, no matter what.
Your comments about fulvestrant are especially helpful, because if I remember correctly, you are on fulvestrant only and have been for many years. Since most of us take so many other drugs it is so hard to know just what drug is causing which side effects. I have a real hard time discerning what is from Verzenio and what is from Faslodex, as many of the side effects are similar and/or overlapping. Your experiences with Faslodex only really help me in my attempts to figure out what's what. And yes, the summer weather really seems to be throwing a wrench in the works too. I'm more tired and lethargic for sure. I'd just love to feel human again. Sending you a virtual hug and hopes that your extra tiredness goes away soon, because as you say, we can't give real hugs. This virtual business still beats not being able to get any support at all though. I never cease to be amazed that you have only been doing fulvestrant and it has been working for you for so many years. Here's to many, many more!
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Hi all. I don’t post very often, but I am reading and I have learned a lot from you guys. I am Rr positive, Her 2 low . For 6 years on Famara/ Ibrance , after that I had more active spots in bones. As far I know I am only metastatic in bones. Two months ago I started Faslodex. So far only mild SE. until yesterday on the blood test showed elevated liver enzymes, double the normal . Of course I freaked out. It could be from the shots, it could be progression in liver. Does someone had this se from the shots?
Thank you , Elena0 -
Is there any news on Oral Serd ? I am on my 35th cycle of Faslodex, the injection gives some discomfort for a few days ..
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@malebreastc There is an oral SERD, Orserdu. It was approved in January of 2023. You need to have a Gardant360 to see if you have an ESR1 mutation, as that is the only way you can have it. I did test positive and made it 9.5 months. The mutation is usually caused by one of the AIs. Have you been on Letrozole or one of the AIs?
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I hate to say it, but it looks like I've had a recurrence behind the nipple of same breast. Biopsy was Friday. Faslodex alone was good for6 years. Results may show a new primary. Anxious to see what meds next. Not looking forward to surgery. I bet you all could have guessed that. I'm not feeling bad otherwise.
Re: tiredness. My dd recently asked if that SE is worse the week after injection and wears off over the month. Might be. I never noticed.
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kbl- Thanks for your response, I don’t have the ESR1 mutation but the Pik3ca, I was never on letrozole. My MO straightaway started me on Faslodex, his explanation was that males have testosterone so Letrozole does not work. This has always been a debatable topic for me as some MOs feel that I should have started with letrozole 😔
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I was on Tamoxifen though for 14 years before I was diagnosed with Mets
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Did you ever get a second opinion? If not, it’s never too late. They do have Piqray and Truqap for your mutation, which I’m assuming you know, but if Faslodex is still working, I would assume you will continue with it. I was on them for two years. It did get old.
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Have any of you here had any issues with shortness of breath? I've had some about 5 months now. When I hike up hill or too fast. I guess it's a real side effect of faslodex.
I spose most here gave heard that I've been diagnosed with a new primary. TNBC!. Don't know what doc will do about treating both at the same time. I might be done with faslodex. I find out Friday. The anxiety about new drugs has begun.
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Anybody had bad nerve pain and areas of numbness in their hip and butt after injections. I have been on the injections and Kisqali since January. The pain is like burning but only to the touch, there is no redness. Talked to my Onc today and he said that I must have both injections in the other hip next time.
Anyone else had the same?
Thanks in advance
Cathy
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@threetree @intolight @gailmary
I’ve been so sensitive to the summer heat since MBC. Treatment, I just can’t take it enough to do h. Brisk walks i always did, let alone walking the dogs. Since I live so close to the beach, I’ve always been there every day sitting in my sand chair with my feet in the surf. I haven’t even been able to bring myself to trek. In the sand to get down by the water, the very thought of it makes me avoid going anymore. I wish I had the motivation to go but I just don’t want to. Especially after the monthly shots of Fasoldex and Xgeva. And daily Verzenio. I’m just lazing around th house today after Tuesday’s treatment. And oh the shortness of breath going upstairs or even doing anything strenuous.
@mccathyg I do get that nerve and numbness also. I always get a hive like welt that is very itchy and burns, and the only thing that works to relieve it immediately is a spray of good old fashion Bactine😊
@kbl and @malebreastc I have been treat by my onc a long time, 13 yeas before MBC, I do trust that I would not go for any. Second opinion. So here I am on this Fasoldex forum😉🩵.
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@gailmary I will pray for your anxiety over new treatment, and that whatever the treatment is will work well and with low side effects. I am on oxygen full-time so that takes care of my SOB but I avoid stairs. Fortunately the house we live in has everything I need on the main level. My DD and DGD live in the basement so I don't even go down there. I live at 7000ft elevation and my worn-out body needs the oxygen boost. I am fine at sea level. And no, I'm not moving.
@mccathyg I also get nerve pain and numbness. This last time I also got a sore on the injection site that we are watching. Fortunately I see my MO before my next shots so she can look at it although it appears to be healing.
@kbl I have never gone for a second opinion. My Mo's office is located at a major hospital and she often brings my case before a tumor board. Since my treatment is working, I haven't felt the need. I am more than eight years out from my original Stage IV diagnosis and am currently stable.
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I have had second opinions and never feel there is any harm. I only asked because @malebreastc had said what his doctor said was debatable. If I question what my doctor is doing, I would definitely seek a second opinion. I’m with a very small office, no tumor board available.
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Plans are to keep me on faslodex while I take chemo for this triple negative. With immunotherapy.
Yikes.
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Into the light. Thank you. Prayers are appreciated. And no I don't think i would be interested in moving either. KBL I'm not sure the size of your clinic matters. The tumor board encompasses MOs and surgeons and ROs from the hospital network. could be from a dozen hospitals. I'd ask.
Interesting though. Saw MO yesterday about plans for chemo. He pulled up an app on his computer and entered all my cancer details and it told him what drugs to prescribe. Said all the big ones ( mayo…) use it. He has to use it otherwise lots of paperwork to convince insurance his idea is better. Glad to see it.
So 4 chemo drugs + keytruda for 4 cycles to start. Dropping FASLODEX afterall. Wouldn't even say he'd plan to go back to it for the ER+ cancer cause anything could happen.
I'll continue to check in here. I'm not going anywhere.
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I've been on faslodex almost 5 years and have tolerated it well. I am seeking a second opinion , not to change cancer centers but to see if this other center has a different perspective on a pesky adrenal gland that has been increasing in SUV value but my onc considers it "an asymptomatic lesion" so we just stay the course and rescan in 3 months. Im not comfortable with that approach as I've done it for the past 3 scans (9 months ) and each scan the SUV increases. It's not an area that is easy to biopsy. My onc did order a Tempus blood biopsy (my first one ! ). My insurance covers the cost and I've already reached all my deductibles. I go to a large cancer ctr (Fred Hutch ) and am in the process of getting a second opinion at UCSF.
Gailmary, sending prayers and good energy your way for your new treatment .
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Faslodex girls and boys: Has anyone had the experience of being extremely exhausted and lightheaded a couple of days after getting your shots? I know most of us get side effects from this drug and have a good few days at least, after getting the shots, where we don't feel particularly good, but this seems exceptional this time around. I always feel crappy for many days after the shots, but I seem to be extra, extra fatigued this time; lightheaded too. I got my shots last Thursday and just came home as usual and took it easy. Then yesterday (Friday) we had a big rain storm that had me "out of sorts" - lots of brain fog and then a ton of body aches; tiredness, etc. so I just stayed home all day. I figured it was a combination of the drug side effects and the rain. This morning we had much better weather and I went out for a walk that I take quite often. It's about 2.5 miles round trip. When I got back home I was just like 10 times as tired as usual and then had developed some lightheadedness too on the last leg of the walk, and that has continued since being home and resting. It's taking me longer to recover than usual too. Low estrogen can cause all these symptoms, but so can things like anemia, so just wondering if what's happened here with me this go around sounds familiar to any of you. At this point I'm chalking it up to the Faslodex/low estrogen, but would appreciate some thoughts from others, if you have them. I don't feel "sick" or anything and my vitals check out just fine on my home gadgets, so I doubt that anything is seriously wrong at this point, but it does just seem extreme compared to my usual "after shots" experience.
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@threetree I have had extra fatigue and lightheadedness off-and-on for a while now, but I do get it also after my shots. You did not say what additional drugs you are taking. I am also on Verzenio and Zometa. For me, it is the combination of it all and the fact I have been treating Stage IV mets for over eight years now so it is all cumulative. Just a thought.
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Intolight - Thanks so much for responding. I also take Verzenio and Zometa; have been doing so since May/June of 2023. Yes, they are all tiring to say the least, and especially when combined like this. This time it all just seemed noticeably stronger, so kind of worrisome. I did have a new and different nurse this time, and even though I asked her more than once to go real slowly, she didn't. She was real nice however, and the shots were smooth and painless, but I'm wondering if getting it all so fast didn't make a difference. I always feel something within half an hour of getting the shots; something of a tired and heavy feeling. This time I think that was stronger too, and again, I'm wondering if it wasn't because she did it so quickly. I've never had them nearly that fast before. My last labs did show some lower red and white blood cells, lower hematocrit, calcium, etc., than usual so I guess there is the possibility of all that making it all so much more fatiguing this time. Even with that, the Dr. had said my labs were stable, consistent with what's seen with the drugs I take, and nothing he was concerned about. That was also from last Thursday and I would think he would have said something if all those low numbers were seriously troublesome. I'm going to try another walk tomorrow and see how it goes.
I am just so amazed at how well you've done all these years. You are definitely one of the inspirational people on here - one that the rest of us can look at and gain hope and motivation. I always appreciate your contributions here.
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Hi folks. Anyone have info on taking a shot elsewhere. My left side has a huge lump for 2 months now and it's very sore from repeated injections. The pain runs down my leg and is quite painful. Can the shot be injected into stomach??? Or thigh?? I really need a break.
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Irish - I'm not certain about this at all, but I think I have read of it being given in the thigh.
Real sorry about the pain and lump. I hope you get an answer. I think others will probably come along with more solid info. Fingers crossed!
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