Faslodex Girls Thread

gailmary

Wow that is long time! Gived me hope, thank you!

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.

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.

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!

Is there any news on Oral Serd ? I am on my 35th cycle of Faslodex, the injection gives some discomfort for a few days ..

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.

I was on Tamoxifen though for 14 years before I was diagnosed with Mets

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.

@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😉🩵.

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.

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.

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.

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.

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!