Faslodex Girls Thread
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@exbrnxgrl. I get it. I am sitting here waiting for mine. Haven't had any issues in 5 months. Just want it over with for the next 4 weeks.
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I agree Brutersmom. I get my monthly shots this Thursday. I dread them and hate getting them, but I haven't had too much trouble with them. I do get a lot of body aches and some migraine type symptoms, but overall they're not as bad as Letrozole was.
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I just had an interesting experience. I have been having BP issues. Sometimes high and sometimes low. I was sent to a hypertension specialist. For 2013 to 2020 I was on a drug called amlodipine. The first time I was on aromatase inhibitors 2016 to 2017, I had sever joint pain. Barley able to get out of a chair. In 2020 I had breathing issues and was sent to a heart specialist. He took me off amlodipine and prescribed a different drug. In 2023 I went back on aromatase inhibitors. Same psychological issues. But no joint pain. Now I am one fulvesterant. Last week the new Dr put me back on Amlodipine. I didn't want to but besides it would be better. I never felt great on that med. After 5 days I had swollen hands, my knee inhad the replacement in swelled and I hurt all over. Pain level was a 6. Of course it was Saturday so I stopped the med. In 48 hours the pain has resolved. I have never read or heard anything about blood pressure meds and hormone blockers interacting negatively.
PS not issues with the shots so far today.
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Awful reactions. Wish there was a test for those.
Thursday is last chemo infusion for tnbc. Yay. Im so tired of it. It treated the ER+ too. I'm expecting to restart faslodex soon. Keytruda will continue for both tnbc and ER+ Anyone taking Keytruda with faslodex for ER+.
FYI medicare was billed $55,000.00 every 3 weeks for Keytruda!
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Hi Ladies. I am officially done with Faslodex—hoorah! I have an ESRI mutation that makes it inneffective. So I am now on Orserdu. There is no anti-hormonal that is needed with it as it was designed to work on this mutation specifically. I am just thankful I don't need to go on an IV chemo yet. Saying Bye to this thread but I will still read my others.
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So happy for you, Intolight, that you at least got things figured out and can now move forward with a new plan. I will look for you on other threads, as I always enjoy your posting. Wishing you all the best and lots and lots of time with this new treatment.
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Best of luck to you on Orserdu.
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I hope it works well for you.
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I had my last chemo treatment Thursday and an mri today. My MO said if it comes back PCR that he would continue keytruda and then not restart faslodex for my ER+ cancer that it's now in remission. It's been dormant for 8 years and the keytuda could act against it too. A very scary thought as I know of a few gals that had really rotten luck when they stopped all meds after faslodex. But they didn't have keytruda as immunotherapy. It's supposed to be good for 3 years after a year of treatment.
I was fretting till I remembered he won't be in on the decidion as his departure from the medical group was announced. So I get to deal with a new guy temporarily probably. Ugh.
Scheduling surgery on Monday
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Have any of you ever found that the side effects you get after your shots get worse before they get better? I got my shots last Thursday, and immediately felt more tired than usual, but just figured it was a one off. I've stayed extra tired, and now this morning I'm a little nauseous, have a headache, and some digestive trouble. I felt worse yesterday evening and this morning than I did right after the shots. Not sure if this is from the shots themselves or maybe some sort of stomach virus or whatever on top of it. Usually I get tired and achy after the shots, but it gradually improves over a week or two. This time it seems like I've taken some steps backwards, but everything I'm experiencing is on the side effect list for fulvestrant.
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Threetree— I sometimes get delayed side effects after my shot. I got my shot last Monday, and Friday and Saturday were my worse days. I am doing better this morning and hoping to travel to Denver in a couple of hours (a 2-hour drive) for an awards ceremony for my granddaughter. This is the first long drive for me in over a year. I know it doesn't seem like much, and some of you travel this far for your treatments, but for me it is a trip. I need to know I can do it. Of course, I am now off Faslodex and onto something else so everything will change.
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@threetree I have only been on it 6 months. My guess and it's a guess only is that maybe you picked up a virus or you are more run down this time the last time. I would probably reach out to my oncologist Monday just to be safe.
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Intolight - Thanks so much. That's interesting about your delay too - and several days after your shots. I think I've had this happen before, but not as strongly, so it's thrown me for a loop. So glad you're feeling better and willing to attempt a 2 hour drive. I don't drive as much or as far as I used to either, and I've been a little scared to try one of the longer drives. I commend you for your courage! I did go a bit farther last week than I had been for awhile and things were fine, so I'll bet yours will be just fine too. I'm glad you have the new Orserdu to try, and so glad you don't have to have shots anymore - that's a real lucky thing. A big congratulations to your granddaughter too! I'm sure you will be beaming with pride watching that awards ceremony. Wishing you and your granddaughter a wonderful Sunday.
Brutersmom - Six months is a pretty good amount of time to get a sense of how this drug affects you, so you should be good by now in that department. I've been doing this for almost 2 years now and when I first started the Faslodex, I was also on the higher Verzenio dose. They lowered the Verzenio in the fall of 2023, and my side effects from both drugs got better, but for some reason this month I feel like my Faslodex side effects are like what they were with the higher Verzenio dose. I'm holding out the possibility that it might be a stomach bug, but I'm more convinced now that it is probably a migraine type reaction due to the hormone shift that the Faslodex causes from the low estrogen. I get these "migraine-esque" symptoms, and I was actually telling the nurse about them right before I got the shots last Thursday. The symptoms just seem to have ramped up and gotten worse ever since. I've felt a little bit better after eating some breakfast and being up for awhile, but I'm pretty sure it's a worse than usual reaction to the Faslodex at this point. I'm getting scans tomorrow and will be right in the same building as the ER, so if anything gets worse or real bad, I'll be right there where the help is. The oncologist is just across the parking lot from that building, so someone over there should be available tomorrow too if necessary. I'm scheduled to see him anyway on Wednesday to go over the scans. I don't have any respiratory symptoms or fever that would suggest a virus; just lots of aches, lightheadedness, weak feeling, some stomach upset, watery eyes, sensitivity to light, frontal headache, etc. and I think that's more migraine like. I've never had anything like this until the Faslodex, and usually it's not this bad. I did a Google AI search and migraine is what shows up strongly. I know the Google AI isn't necessarily reliable, and I've seen things with that before that I know are out and out right not true, but this seems to align with what all kinds of sites say are "vestibular migraines", and it also lines up with the Faslodex side effects list - just extra bad this time, I guess. Thanks so much for your input and taking the time to respond. It's really appreciated.
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@threetree - good luck with your scans tomorrow.
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Thank you very much, GoingtoBeatThis. It's much appreciated. I am nervous as heck of course.
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Hope everyone is doing well. Inalways knew my eye pressure increased in response to occular steriods. For the last to years my eye pressure has increased more then it should. My opthomologist took some time to review my records and said she is pretty sure I am a steroid responder which means any steroid, injection, pill, inhaled, topical is going to I crease my eye pressure to an unhealthy level. She ask about blood pressure and suspects I may also be whybi cannot control my blood pressure well controlled. She also said this could become a major concern down the road with cancer treatment and I am to call immediately if the docs make any changes in treatment. I have known since my early 20's that my eyes didn't play nice with steroid eye drops but never heard of any of the other things she mentioned.
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I‘’Ve been so out of it with so many weird pains and other things, but I forced myself to go to a family March Madness get together yesterday even though I felt awful. I had my XGEVA and FASOLDEX injections on Tuesday last week.. I was so weak and achy I said to DH how bad I felt and layer down for a little while after showering shampooing and blow drying my hair before going to the March Madness thing at his cousins house. So I just went to the XGEVA SIDE EFFECTS website, which is something I try to avoid doing or fear of somatizing those SE’s…..But wow @threetree !!! There are three lists there and and. Reading it over I have Every single one including sneezing and coughing and bone pain, and literally every single one, and different Versions of them.
copied& Pasted
- back pain
- irritation, itching, or reddening of the skin
- bloody or cloudy urine
- cracked, dry, or scaly skin
- difficult, burning, or painful urination
- frequent urge to urinate
- muscle or bone pain
- pain in the arms or legs
- rash
- swelling
- arm or jaw pain
- bloating or swelling of the face, arms, hands, lower legs, or feet
- body aches or pain
- chest pain, discomfort, heaviness, or tightness
- chills
- confusion
- congestion
- cough
- difficulty with breathing
- difficulty with moving
- dryness or soreness of the throat
- ear congestion
- fast or irregular heartbeat
- fever
- headache
- hoarseness
- joint pain
- loss of voice
- muscle cramps in the hands, arms, feet, legs, or face
- muscle stiffness
- numbness and tingling around the mouth, fingertips, hands, or feet
- pain in the lower back, bottom, upper leg, or hips
- painful blisters on the trunk of the body
- pale skin
- rapid weight gain
- runny or stuffy nose
- seizures
- sneezing
- stomach cramps
- swollen joints
- tender, swollen glands in the neck
- tremor
- trouble swallowing
- trouble breathing
- unusual bleeding or bruising
- unusual tiredness or weakness
- unusual weight gain or loss
- voice changes
- dizziness or lightheadedness
- excess air or gas in the stomach or bowels
- feeling of constant movement of self or surroundings
- feeling of fullness
- heartburn
- lack or loss of strength
- redness, pain, itching, burning, swelling, or a lump under your skin where the shot was given
- sensation of spinning
- trouble sleeping
- upper abdominal or stomach pain
😳
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Oh Shana - Yes, all those side effects, and even if you don't have them all or a lot of them, the doctors just seem to really want to play them down and blame something else like "normal aging". I always make it a point to mention the drug side effects causing all my aches and pains when I'm at my appointments. They'll ask me how I feel; if I have any pain, etc., and I'll tell them I have aches and joint pains, etc., but I always add how - "That low estrogen from the Faslodex does that," or "the Verzenio always gives me constant stomach trouble". They usually just look at me and then change the subject or something, and you can tell they wish they'd never asked, but I think it's important to keep the issue out there about how all these drugs cause so many problems in themselves. You looked up the Xgeva side effects, and they are very similar to the ones from my Zometa. Faslodex and Verzenio overlap too, with some of the same side effects. That's one of the reasons it's so hard to know just what is what and what's causing a particular pain or fatigue, etc. I'll go awhile and sort of forget about the published side effect lists, but then like you, some days I'll just feel really awful and I'll re-visit the side effect lists for the various drugs they give me, and sure enough, they'll all be there, and then I just tell myself, "Yep, looks like it's all drug side effects and nothing new."
I'm glad you did get out to the March Madness event! I can relate to having to rest after showering. I have to rest before and after the shower; then I blow dry my hair, then I rest again - ugh! I hope the outing went well, even if you weren't initially feeling up to it. Sometimes if you just power through, get ready, and then get to the place with the other people, it turns out to have all been worth it, and you even feel a little better and glad you went. Hope that's how it was for you!
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@threetree 😂Yes. I used to. feel energized after a shower, and now exhausted. That’s from all the treatments leaving us weak and exhausted.
I looked up the SE; from. Verzenio & Fasoldex and ther was not a huge list of SE’s that Xgeva has, but the lung and cough issues and the swallowing, & exhaustion & weakness, and bone pain are in all three. meds.
@brutersmom Yes these treatment drugs always make me feel like I’m coming down with a terrible virus. Sorry you are dealing with the eye pressure. My DH has glaucoma and sees his Opthomologist regularly who monitors it. He’s on eye drops prescribed for him and hey. Must. Be working well for him because his ye pressure has. Been going down.☺️💙
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@shanagirl and @threetree the list of side effects with drugs are crazy. Last day of Ibrance for 2 weeks and as ussual I am exhausted. I have been having drug interactions and some food reactions. The specialty pharmacist suggested if I get a new side effect when I start a drug I look up the side effects of both drugs and see if they over lap. Seems like all drugs over lap with some side effects. This should be interesting.
I am glad you choose to go have fun with March Madness. I get tired from these drugs but I try to push through. It good for the mental health.
I have scans Tuesday. Not looking forward to drinking stuff, a day of injections, and xrays but it is necessary. It has been 2 years this past January that the mets showed up.
Right now I am trying to convince my husband we need to do some traveling.
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Had my last loading dose on Tuesday.
Friday morning I woke up at 2:30 am with a swollen/tingling lower right lip that felt like I had gotten a novicaine shot. Symptoms lasted a little over an hour. Same thing happened at 6am the next morning.
Read that numbness in mouth or lips can be a side effect of Faslodex. Wonder if any of you have ever experienced this. Thanks.
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Brutersmom - Yes, so many of those drugs overlap re the side effects; makes things more of a pain (literally and figuratively) for sure. I too first got mets discovered in January of 2023. Didn't get started on the drugs (Fulvestrant and Verzenio) though, until April/May. I was very disappointed with the delay time, but … So far, so good, and I just hope to keep going as "stable" for much, much longer. Best of luck with your scans on Tuesday; I can sure relate to the dread of the day, but it will be over before you know it.
GoingToBeatThis - I never have had a symptom like that from Faslodex, but if I was in your situation, I'd consider the drug as the most likely cause, unless and until proven otherwise. While I haven't had that side effect specifically, I've had odd ones after starting new drugs, and invariably I'll look it up and sure enough, it will appear on the side effects list. I'm sorry you got that, and I hope it doesn't become troublesome and goes away soon.
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@going2beatthis Although I’ve noticed that I get all the overlapping side effects with these treatments, I’ve never had the lip numbness and tingling you describe. It could be related to nerves in your cervical spine that run to your face. Ugh, 😩 so many discomforts. To. Worry. About. Here. Are the sure effects list I copied and.
COMMON FASOLDEX SIDE EFFECTS
Headache;
Bone joint muscle pain;
Nausea vomiting loss of appetite constipation;
Weakness feeling tired;
Cough trouble breathing;
Abnormal Liver Function tests
Hot Flashes
Pain or itching lump where medicine as injected
🩵🌷
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@threetree i looked up my instructions that I get after my shots. Here is smart it says.
Call right away if you experience any of the following problems:
Pain that changes in severity or location
Increase in shortness of breath
Fever higher than 100.4
Vomiting uncontrolled with nausea medications
Diarrhea uncontrolled with medications
Severe sudden headache
Change in balance
Sudden change in vision
Any unusual symptoms that begin after medication
I think yours fits in the unusual symptom category.
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Hi all. It has been determined that the numbness/tingling in my lip is from the trigeminal nerve that runs through the sphenoid which now has my metastatic lesions.
Recommendations given to me when I started on Faslodex (Claritin, lidocaine cream and walking/stretching have helped tremendously…no feeling like I have the flu, limited pain in injection site) have allowed me to limit side effects. Am going to start on Xgeva. Any recommendations to help with side effects? Do any of you get the injection in your belly instead of your arm? If so, thoughts?
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I started on Faslodex mid Feb. Had my loading doses 2/17, 3/3 and 3/18. Get my next shots on 4/14.
My markers have gone up every time since the beginning of Feb. I had blood tests on 2/4, 3/18 and 4/8…
CEA
2/04 - 11.4
3/18 - 20.3
4/08 - 33.6
CA 15.3
2/04 - 25.0
3/18 - 30.0
4/08 - 47.8
CA 27.29
2/04 - 47.0
3/18 - 62.0
4/08 - 88.9
Did any of you experience your makers going up when you first started on Faslodex after your AI failed? How long after changing to Faslodex did your makers start going down? This trend is new to me. When I started Letrozole and Verzenio 4 years ago, my makers never went up but came down very quickly to low normal (one witin 2 months and the second one within 6 months).
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@going2beatthis what did your oncologist say?
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@brutersmom - has not said anything so far. I see her APRN next Tuesday.
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Ok, now switching to this thread. Had first 2 shots yesterday. Seemed like everything was ok at first. I did do heat, not ice and walked. Today, I was so exhausted I could barely get out of bed. I already suffer extreme fatigue from low estrogen (just stopped taking Aromosin), but this was like fatigue Like I've never had. Would this start this soon? One dose? Also sent my SI joint pain into the stratosphere. Even though the nurse did the injection properly. Honestly, I was simply expecting my rear to be sore. Will this get better?
I'm also thinking this could be emotional and physical burnout from the diagnosis, the tests and worry. It's been 5 weeks of non relenting stress and I was feeling that way after I got home from the shots just an hour later.
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