Faslodex Girls Thread
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Hippmark - Give it some time, and it will likely smooth out, but it does make you very tired. Those first 3 loading doses really give you a wallop. Once it gets down to once a month on a routine basis, it's fairly smooth, but does cause ongoing fatigue and joint/muscle aches like an AI does; but shouldn't be as bad as what you have described. Very sorry you have to experience this. Good luck with it going forward.
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Hippmark. Get up and move. That foslodex can be pooling and pressing on nerves. Try heat as well. You might feel tired the next day. I suspect you may have crashed from being stressed out. You seemed pretty stressed prior to the shots. This disease sucks sometimes it seems like all we do is go to the Dr, take meds or get treatments. Time to give yourself some grace. Try your best to get up and get moving. I don't know what other meds you are on because you don't have a signature. The one thing I have learned is the more I do the better I feel. It is not always easy but it helps.
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hippmark,
You did well 💐. I look up to you because I will never be able to handle it, short of being heavily sedated .
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Thank you ladies! I don't feel as fatigued today. Hopefully, it will get better after the loading doses. I suspect anxiety crash had a lot to do with it. My BP before the shot was 170!! I'm always around 130.
BTW, I will be starting on Kisqali as soon as I can see if I qualify for the med without the $2000 co-pay. Those will be my 2 drugs
I'm never bothered by the shots, just the side effects that make me anxious. You ladies keep me in check and I appreciate each of you immensely!
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Hippmark - I second what Brutersmom says about getting up and moving. I'm always better the more I move (I am on Faslodex, Verzenio, and Zometa; close to two years now). For me it is both the shots and the side effects that I have problems with, but I get through the shots and then prefer to move if I can afterward.
(I have a friend who kindly drives and accompanies me to my appointments, but she is very sedentary, likes to park as close to the door of the clinic as possible, etc., so on the days I get my shots, we unfortunately just go back out to the car and go get lunch, so I wind up sitting, sitting, and sitting. As soon as she drops me off at my place though, I go out in the neighborhood and walk, walk, walk. On the rare occasions that I have gotten the shots on my own, I usually walk around the clinic/hospital campus for a good while after, and I think that helps a lot. I also try to take daily or about 4/5 days a week walks around the neighborhood, as it just helps all of this. I have never been an "exercise nut", "gym rat", or athletic in any way, but I do enjoy walking and it has been my saving grace with all this cancer treatment. Even when I'm stuck in my apartment I try to shift my weight, change sitting positions, and move around fairly often. It really helps!)
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@hippmark threetreevis right. Get outside and walk. That will help with any muse discomfort and get the drug moving. Stressing the but will also help with the pain. Start slow and build up. It's not a race. Keep moving it also helps reduce stress.
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I do want you to know that I exercise every day. Jogging, lifting weights, etc. so it is already a habit. I've just been having some killer SI joint pain lately and have to go back to PT for it, so my left side shot was more difficult. But thank you for the get up and move suggestions!!
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Saw the APRN this week. She said they don’t rely on markers when it comes to Faslodex. They scheduled a PET/CT scan for May after I have been on the drug for 3 months.
I took threetree’s suggestion this past Monday about putting lidocaine cream on my butt checks prior to getting my Faslodex shots. I didn’t feel the needle or the medicine going in on the left side. Not so, for the right side. Needle hurt a lot as did administering the medicine. The nurse gave me an ice pack for my right side. Left and walked for 20 minutes before driving home. That night all was good on both sides. Yesterday, right side had no pain at all but my left side started to hurt at and around the injection site. I put some arnica on it before bedtime and could not sleep n my left side. This morning it was still sore and I put some Voltaren ointment on in before heading out from my radiation treatment to my cervical spine. Since the clinic where I got the Faslodex shots was in the same building, I decided to stop by there to find out what to do. The head nurse happened by and the receptionist asked her to talk with me. She was very helpful. Took me into the bathroom and checked for any swelling or rash. None found. She did say to try warm heat 15 minutes on, 15 minutes off. Hopefully that will work.
Regarding my numbness in my lip and chin, I saw the neuro-oncologist yesterday afternoon. Both he and my radiation oncologist are not 100% sure it is coming from my trigeminal nerve since one normally has burning and pain during the day and I only have that late at night or in the wee hours of the morning. The numbness and tingling has been constant since the 5th of April. He is ordering a lumbar puncture but wants it done by the interventional radiology department instead of by him because of the precision needed to make sure the fluid is from exactly the right point (apparently my spine is not straight and that complicates the procedure). Still waiting to hear from scheduling. Will update when I have appointment.
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Hippmark - Glad to know that you are so active. Jogging and lifting weights is way beyond anything I could/would do. Good for you. I think those Faslodex shots can cause some very "heavy" feelings right after you get them no matter how much you move. They do smooth out though over time and again, I would just give it a couple of months to get on a regular routine and things should go better for you.
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Great advice!
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Today was my 44th cycle of Faslodex, so far so good, I read am article if a patient on cycle 91, anyone in this group ? Just curious
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👏👏 WOW that is fantastic! I am still waiting to find out if it is working for me. 🤞🤞
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That's great. I am on 6 months. I was switched for quality of life issues so it is still considered my first line.
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Had my second loading dose of Faslodex yesterday. I had her move the shots closer to my hip. Got on those heat pads and walked for a mile.
Today, I'm not as sore as last time, BUT I am also on low dose Prednisone temporarily due to my SI joint, which these shots like to throw into overdrive. Plus, they gave me an oral muscle relaxer to take.
I'm thinking that maybe if I take one muscle relaxer day of shot, it might help.
Also started the Kisqali 2 days ago but only on a 200 dose. I need my body to get used to it and don't want to updose to 400 until I am off Prednisone as the Pred. Also makes me feel weird and jumpy.
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Hippmark - Glad your second dose was a little better. My understanding is that they used to give the shots closer to the back, and it was called a "dorsogluteal" injection. Apparently using that method, it was more likely that they would hit the sciatic nerve (unintentionally of course), so the current protocol is to use the "ventrogluteal" injection site, which is closer around the side to the hip. Once in awhile I will get a nurse who still does it closer to the back, but usually those nurses don't give the shots routinely and are still in the old "dorsogluteal" mode. I think the ones closer to and around the hip area are easier and safer all around. I also think you are wise to start your Kisquali slowly and it sounds like you have a doctor who is on board with that. I do Verzenio, not Kisquali, but I too wanted to start with a low dose of that, after I had begun the Faslodex. Unfortunately, my doctor wanted me to start with the full on dose, but I only took half the dose for the first couple of weeks at least, planning to gradually increase, and she was upset and wrote in her notes about me being "noncompliant", etc. I did work up to the full dose of Verzenio eventually, but like you, I wanted to see how it affected my body first. Well, not too long after that I switched oncologists and I love and am still with the one I switched to. Within a few months of me taking that full dose, he lowered it to a level that is somewhere in between that low dose that I began taking on my own and the big full dose that the other oncologist wanted. I had every intention of going up to that full dose gradually, but "gradually" was the key for me. She just didn't like it. I'm glad you are able to do that with your doctor's blessing, because I think it all goes better (especially with the Fulvestrant at the same time), if you can do that.
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I'm laughing because my MO does not know I'm starting at 200! But, I know my body is better when I let any medication get used to it.
Besides, these steroids make me feel so awfully strange with no appetite, crazy moods and dizziness that there is no prayer I'm adding full dose Kisqali plus these shots all on the same day! So I'm being my own doctor right now.
Hey, I started everything. And right now, that's the best I can do!
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Oh wow. I guess I just assumed your doctor was on board. I did mine without the dr knowing also, but later told her. Sometimes that's just what you have to do. More power to you.
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Thats what I find. He was already not thrilled I wanted to start at (and stay on 400). But he agreed that was fine. I know how my body processes drugs, so for me, I just do what I know my body can tolerate. He knows I'm an "outlier" and research more than he does!
Interestingly enough, my tumor markers came back yesterday and all had dropped to normal range. All I had done at that point was 1 loading dose of Fulvesant. I know those tests aren't all that reliable, but at least everything dropped back to normal with virtually no treatment yet. Something to give a little bit of hope at this point.
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Great news re your tumor markers! I think you will see even more improvement shortly.
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Im also consulting with The Block Center in Chicago. They started me on various Vitamins and herbs including mega doses of green tea extract, PectaSol, Omega 3, Reversotrol among others. That could be helping too.
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Hippmark. I hope they warned you about side effects from the herbs. You said you are taking mega doses. I could not tolerate green tree more than a glass a day and resteverol at the recommended dose. Hopefully you will have no issues.
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Hippmark - While all of these are very personal choices, you might want to take a look at this site and read up on the supplement vs. getting these things from actual food situation. The more I've read about supplements, the more wary I have become (not just from these sites I've noted below). My understanding is that green tea as tea can be beneficial, but the extracts can cause problems. I think it is similar for resveratrol, e.g. foods like walnuts, cherries, pomegranate, and blueberries can offer resveratrol benefits, but the supplements can be another matter. Apparently the concentrated versions just aren't the same and can sometimes cause problems. Just my 2 cents.
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Threetree, thanks for the links. My MO is adament against supplements. I take probiotics and a few selected vitamins and that's all. Of course I try to eat right.
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Intolight - You're very welcome for the links. I too have become very sparse with the supplements and try to get most everything from food. I even get the probiotics from daily yogurt and fresh/unpastuerized sauerkraut. I get most of the omega3 and B vitamins from eating lots of fish, but I do take Vitamin D, and then I still take a turmeric supplement (very low dose and only once in awhile), but probably shouldn't. When I started all this cancer treatment business I took a lot of turmeric supplements, but learned that that too in supplement form, might not be so good. I'd like to start adding turmeric just as a regular spice to my food, but just haven't gotten there yet. I also drink green tea combined with ginger tea; just green and ginger together with nothing else, 2-3 times a day.
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I appear to be very typical. After my initial stage IV de novo dx, I went all in. Supplements, juicing, plant based, you name it. I hated it for the most part. Additionally, I saw anecdotal evidence, personal testimony, and possible links between supplements and better outcomes. But being a data driven type of person, this was simply too vague for me. My diet has always been considered healthy, though never extreme yet I was stage IV de novo. Younger sister who lived clean before that was even a thing? Uterine sarcoma, and passed away 6 months later. Certainly food and nutrition are important but barring further science based research, there is no reason to not get your nutrients from actual food (unless there are medical issues with food). Food is my source of nutrition and except for melatonin, I don’t supplement. BTW, though I would never attribute it to my minimalist approach (really, no one knows why) I had 13 progression free years at stage IV. Was my approach too passive? There simply is no way to know but I’ll take it! In the end we all do what feels right to us as individuals.
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I eat very healthy already. The Doctor, who has 40 years of research, says that cancer sucks out some of the nutrients in food you eat and you need supplements to replace them. I believe him. Not to mention that the nutrients these days from the food we eat is lacking. They are running a terrain panel on me and once that is back, perhaps some will change. So for me, this is where I stand at the moment. As we always say "to each his own."
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exbrnxgrl I am like you. I have shyed away from supplements unless recommended by my oncologist. In my book not enough studies have been done. I have 2 friends that went the holistic route and ended up on meds too advanced. I would like to see more scientific studies on food and cancer. They have done the benifits of exercise and treatment but not much with food and supplements.
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Hey, Faslodex ladies and gents - Have any of you started to get worse side effects after a long time (2 years) of what have seemed like "routine" side effects. I've always had some side effects after the shots like feeling blah and tired the next few days, and occasional soreness where they give the shot, then the ongoing low estrogen stuff like body aches, hot flashes, joint aches, etc., but they've been manageable and "doable" The last couple of months I seem to have been getting worse joint and muscle aches, headaches, digestive problems, and now some bad soreness and tingling in my lower limbs after the shots. Extra tired and even more digestive trouble too. The shots I got last Thursday seemed routine in terms of the administration and immediate after effects, but ever since they've seemed to cause worse side effects - especially with leg tingling and aching, along with the digestive stuff and extra tiredness. It got worse on Monday and then yesterday ramped up even more. I thought I might have picked up some food poisoning (was out on Mother's Day) or a stomach bug, or even just the regular flu, but after reviewing the Faslodex side effects list, I'm thinking it's a prolonged and ramped up version of drug side effects. This has been happening ever since about January when I started getting the Zometa and Faslodex at the same appointment. For two years prior I got them separately. Then the schedulers started putting them together. I figured "what the heck", so my last two Zometas and about 4 Faslodex's have been under this system, but I have been feeling worse and worse now after the shots. I don't know if I should go back to getting the treatments separately and 2 weeks apart like before, or if Faslodex can just start doing this after you've been getting it for a couple of years. I know some on here have been getting Faslodex with no major problems for many years, so I just don't know what to think. I noticed I was starting to post about this same issue back in March, and now it seems like it's just progressing. Any ideas, thoughts, suggestions? I just really appreciate others' input, as it really helps me gain perspective.
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@threetree - 2 thoughts
1 - I would go back to getting your Zometa on a different day than your Faslodex. I understand that your mo and the schedulers "think they are doing us a big favor" by putting them on the same day, but if I do have side effects, I want to be able to identify which one of the drugs is causing my side effects.
It happened to me (and they didn't even advise me they had done that) on an upcoming treatment. Fortunately, I was able to switch it back. I did mention it to my mo when I saw her on Monday. She was fine with me getting them on different days.
2 - They are getting the Fasdolex from a different manufacturer than before. Have no idea and have only been on Faslodex since the middle of February 2025 but I had a similar thing happen to me when I was on Letrozole. After taking it for 2 1/2 years? I started getting headaches and other joint side effects that I didn't have before. Once I realized that the letrozole from the new pharmacy used a different manufacturer, I went back to the original pharmacy and manufacturer I had been using. The side effects went away!
Hope you figure out what is causing all your side effects as soon as possible.
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@threetree I agree with going to beat this. I have not been on long enough to have issues but i have seen situations where different manufactures can cause different side effects. If that is not the situation make sure you get Zometa on a different date than fulvesterant.
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