Faslodex Girls Thread
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Aw, it’s a relatively easy treatment, and I’m hoping it kicks ass for you, Francie.
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The assistant wrote me tonight, "You have been off treatment of Enhertu and really just started new therapy. We normally seen the marker go up in these situations before it goes down. It is way too early in the treatment course to see response. No need to switch to Xyloda at this time. I will make sure Dr. XXXX sees the result though and you should receive a comment from her as well.:
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@woodlands I have seen it happen, so I hope they come down soon so it gives you some peace of mind.
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I got my first injection yesterday. Actually it was 2, because I got one in each hip. Thanks to your tips, I asked about warming it up first and Mayo does that for everyone; they didn't have cold spray and had me sit on ice packs for a few min but it turns out I placed them in the wrong place on my hip but I didn't need them anyway. She had me lie down on my stomach and I seriously didn't feel anything but a slight sensation down my hamstrings, like I had overworked them in a yoga class, for just a minute. I feel a little "off" digestively, but ate two crackers and am drinking some tea and hopefully it will get better today. It may be just the power of suggestion since I expected to feel "something". I don't feel particularly fatigued but perhaps most of it is simply having to drive 6 hours yesterday (3 down, 3 back home) for my appt.
Next one in two weeks, then I go to monthly.
Claire in AZ
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@claireinaz - that sounds like a great first injection of faslodex ! It's always 2 per appt , one in each hip. My nurses are so good at these injections and have told me they give a lot of them. Im sorry you have such a long drive but it's worth it for top notch care . I didn't like the first month as it's the double shots month (2 weeks apart ).
@woodlands sending you good energy and prayers that this works its magic and your tumor markers drop. I think it does take a few months to show it's working.
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Yay!! Glad it went well. I think it’ll continue to be this easy for you. Have a great holiday.
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Hello and Happy Holidays all. I've been scrolling and reading a bit over the holidays, but haven't really felt up to being able to respond to most all. I've had an upper respiratory virus for about a week and have been very fatigued. Also got my fulvestrant shots last Thursday, which brings me to my posting issue: Have any of you thought that side effects get worse over time rather than better? Do any of you get new or more severe side effects after months of getting these shots? I went for what is usually a routine walk earlier today, but before getting close to home, started feeling lightheaded, headachy, and very weak and tired. Also, lots of joint and muscle pain that was more severe than usual. I think some of the pain is due to coughing so much with the virus (chest, back, and stomach muscles), but all of this seems to align with the fulvestrant side effects list too. I've never felt this bad out on a walk, so am wondering if any of the rest of you have experienced new and/or changing/worse side effects the longer you've taken this drug. I've been on it since last April and it seems like it is taking me longer and longer to get over the initial response to the shots anymore. Any thoughts or comments? Thanks so much.
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Threetree, I don't think I've had any side effects to speak of. I discount those from lack of estrogen as that is necessary. I mean I wouldn't stop faslodex cause of it.
And those effects didnt really affect me for several years. Im on faslodex about 7 years now. But some of what you listed is also due to lack of estrogen. If you were recently on an AI before this then it could be, I guess.
I also tell myself that I am 67 now and have a touch of arthritis whether from getting old or the meds. It flares up with bad weather and the sugar that is popular this time of year.
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Gailmary - Thanks so much for responding and I want to apologize for not acknowledging your comments sooner. They are helpful and appreciated for sure. Interesting that you don't count the side effects that you consider necessary. I'd never thought of looking at it that way. I see them all, but just figure I'll put up with them as much as possible to obtain the drug benefits. Yes, much of what I'm experiencing is from low estrogen and I always get a big burst of these symptoms after getting the shots ( hot flashy, body aches, headaches, and fatigue, etc.). I've just never had it all this bad before. I want to stay on this drug and don't want the side effects to be so bad that I have to stop. I just don't know what is ok to just wait out or put up with vs what might be dangerous. Also, I recently read that faslodex peaks in your system anywhere from 2-19 days after the shots, but usually around days 5-7. That's where I've been the last few days; day 4-7 and I feel worse than I ever have with this. It's been a pretty awful week, but if it's on a week, I'll deal with it. I'm going to give it another couple of days or so before checking with the Dr. I also recently read that the worst side effects of a drug unsurprisingly happen at about the same time it peaks in your body. Like you, I also think the winter weather is making a huge difference. I don't do too much sugar even around the holidays, but I'd love to! You are so amazingly lucky to have gotten 7 years with this drug, along with few side effect issues. Keep it up! I'm really happy for you and you provide inspiration for the rest of us. If I can only be so lucky too ...
I also started a new lower dose of Verzenio (100 mgx 2) the same day I got the shots ( wish I hadn't now), and maybe that is affecting things too. Thanks again, Gailmary, so very much.
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Hello everyone! Today was my first set of shots. I’m super nervous, mostly because it’s a whole new treatment line, my second. So I had my faslodex shots and just took my piqray at lunch. I figured I should take it while the doctors office was still open in case something goes wrong. I made sure to warm up the vials and I got lidocaine before each shot. No real pain from them, just the general meh feeling I get from my Lupron shot. I am feeling a little weird after the piqray, not bad really just kind of out of it. I’m just a ball of anxiety over this so every little twitch worries me. Hopefully this combo works and gets everything under control though. Thanks for all the tips!
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Hi!
I was diagnozed with extensive bone mets in October last year and started directly with Faslodex. A month later I started Kisqali. I am 52 years old and in November I asked my oncologist if she was certain that I was in menopause. She thought I was and my S-Oestradiol was tested and it was 23. In the beginning of December it was 173 and this Friday it was 581. Has anyone experienced rising oestradiol due to Faslodex? I will call my oncologist tomorrow about this and if I need to start with Zoladex.
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Hi Ladies. I have been on the bone Mets thread mostly. I thought I would check in with my fellow Faslodex buddies. I have been on this med for about a year. I was terrified at first, but honestly getting the injections doesn’t worry me anymore. A couple of days after receiving it, I felt muscle spasms in one spot or another in my back or ribs. I use heat, rest, and Tylenol to get past it. It usually lasts a couple of days. I also do gentle stretching. The other side effect I get is an optical migraine, which gives me flashy vision for about 30 minutes. That only lasts once or twice in a few day period a few days after my injections. . I have had these things my whole life around my period and during menopause. After a few days things improve, except for the occasional muscle spasm. It is nothing I can’t work through. I take the lowest dose Ibrance along with this. I am doing pretty well, considering. I mostly try not to overdo it. Happy New Year everyone. I will check in here more often. Does anyone know anything about the oral version of this drug? I know it was accepted by the FDA. When is it used? I thought I read maybe 18 months after being on this drug combination, but I haven’t researched it. Thanks.
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@mimmi71 I’m sorry I can’t answer your question because I’ve never had my oestrodial checked. I’ve also had a hysterectomy, so I was thrown into menopause. Please let us know what your doctor says.
@gigil I am on the oral SERD called Orserdu/elacestrant. You would need to be tested to see if you have the ESR1 mutation to go on it. I was on Letrozole and did not have the ESR1 mutation my first test years ago, but the Letrozole can make you develop it, and I was tested again this past September and do have it now, so I started Orserdu in October. You can ask for the blood biopsy to see if you have the mutation. I was on Faslodex from September of 2021 to August of 2023.
I’m glad you’re tolerating the Faslodex fairly well. I’ve never had migraines, so I can’t even imagine dealing with those.
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I’ve been on falosadex for about six months and lately I’ve noticed I have lost my taste nothing taste like it should I can only taste strong flavors like garlic or clove, but nothing else has any taste not even my coffee is this weird side effect? this happened with the red devil, but my taste did come back, but this is weird.
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@spookiesmom I am experiencing that as well. I do taste sweet, which is not good. It is the only type of thing that appeals to me. I force myself to eat a balanced diet. Some days I do better than others.
@mimmi71, I am just switching my care to a larger cancer center. I hope they will check my blood. I started on Letrozole. I am not on Faslodex injections. How are you tolerating the Orserdu as opposed to the shots?
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I've been having a real rough time ever since my last shots about 3 weeks ago and I'm wondering if any of you find that the side effects from this get worse the longer you're on the drug. I started this mid April of '23. I've been weak and fatigued, brain foggy, ache all over, have less appetite, and little to no motivation to do anything. This month I also seemed to start getting headaches that I think are hormone related. Some sort of blend between what they describe as migraine and/ or tension headaches. I'm not a headache person and onc doesn't think it's the cancer. I had all good scans in early December and good labs a little less than 2 weeks ago. Over the last week or two I've developed a lot of GI symptoms on top of everything else, along with some bladder pain and sensitivity "down there". Also lots of gas, bloating, epigastric stomach cramping, and sometimes diarrhea. Got tested for UTI yesterday, but that's not the problem. A month or so ago, the onc thought it was Verzenio causing my problems so he lowered the dose and there is a noticeable improvement in my fatigue level, but all this other stuff keeps getting worse. I never had diarrhea with Verzenio, as so many do, plus I'm on the lower dose now, so don't think that's the problem, although nurse yesterday kept trying to say it probably was ( onc wasn't available). All of these symptoms seem to fit low estrogen when I look them up, but they aren't necessarily listed as fulvestrant side effects. Have any of you had these kinds of side effects to this degree, since you've been on Faslodex? Just how low can our estrogen go? I'm not just talking about those couple of days after getting the injections, but ongoing? Sorry this is so long, but lots of symptoms. Thanks so much for reading and any comments or thoughts you might have. ( Re increase in symptoms over the last couple of weeks have also been considering possibility of stomach bug, food poisoning, etc, but as time goes on, those things seem less likely.)
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Hello Ladies!
I am on Fluvestrant and Ibrance. I am going to post this in the Ibrance thread also. If I should post somewhere else please let me know.
I had a scan on Monday and there showed some progression of tumors in my liver. So since I had the scan three months ago compared to the one on Monday….Two tumors grew about one cm. One tumor is new that is less than a cm. Another tumor complete disappeared. I also had mets in lung. Lung is NED. These results are all from Mondays scan. I am not sure what to make of it. Any thoughts would be appreciated.
I have been on this combo of therapy since Nov 2022. Is it possible to have tumor flairs on this combo? Are tumor flairs only for chemo?
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Hi!
@kbl, I had to start with Zoladex. Did not get an answer regarding if Fulvestrant can influence oestradiol. My doctor said that clinically the Fulvestrant work even if you are not in menopause but the guidelines from the manufacturer says you should be. My doctor said that my treatment still worked before Zoladex. I am not 100 % convinced.
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@mimmi71 Im sorry I don’t know the answer. I hope the Zoladex helps.
@luvdbyhim I have not heard of tumor flare from Faslodex. That doesn’t mean it doesn’t happen. Have you had a blood biopsy to see if you have any mutations that have developed?
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@Kbl - I have not heard of tumor flare from Faslodex either but still new to all this. No blood biopsy as of yet. Waiting another 2 months to rescan. I have covid too so not sure if that contributed to tumor inflamation in the two original tumors. Thank you for the info. I will ask doc about blood biopsy next visit.
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@luvdbyhim Please let me know how it goes. Sorry you have Covid. I hope you feel better soon.
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@kbl - yes on the mend! Thank you. I can not complain about getting it. We were on a cruise :) Plus symptoms were very mild literally thought it may have been allergies.
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Luvdbyhim, I had tumor flare and I never had chemo. I thought it was from radiation. At the time I just started Ibrance Faslodex And Femara. Never discussed it with MO.
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@luvdbyhim So glad it wasn’t horrible.
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Hoping that someone here may have some advice on a scary experience I had yesterday. I have been having Faslodex injections since May, 2022. While the injections are unpleasant and often result in painful lumps that last for months, I didn't think it was too bad. I have some stiffness, bone pain and muscle aches, but I also have arthritis and quite a few sclerotic bone mets, so can't pin it on faslodex. Yesterday I had my routine xgeva and faslodex shots. Xgeva was fine, but as soon as the faslodex shots were done, I started to feel lightheaded. Thinking it was because of the N95 mask I had been wearing for an hour, I left the infusion center to get some air. By the time I got to the lobby, I was dizzy and weak and had to sit for a while. Fortunately my car was parked close by and I was just able to get there and collapse into the seat. I was shivering uncontrollably and couldn't get warm despite the heated seat and blower on the hottest level. I stayed there for 30 minutes before I felt that I could safely drive the 15 minutes home, but the stress of the drive increased the tremors. When I got home I went straight into bed fully dressed and called to my husband to bring extra quilts. He spent about 30 minutes massaging my arms and legs to increase the circulation and finally just laid next to me. I spent the rest of the afternoon and all night in bed.
Today I feel better, just very tired. I discussed the episode with my MO and she believes it's an allergic reaction, but I don't know how that could happen when I have been having these injections for almost 2 years.
Wondering if anyone else has had a similar experience and how it was resolved.
Eleanora
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ELENORA, I never heard of anything like that but do know that allergies can develop like that. What did the MO say to do?
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She said to be sure to take an antihistamine the day before and day of (I already do) and to add Pepcid AC. She's going to message the infusion center and say that I should stay for observation for 15-30 minutes next time and if there's an issue I may need fluids after the shots.
Neither she nor I want to change meds, as it's working.
Eleanora
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Alright, Ill be starting this as a monotherapy from Thursday, after having adverse reactions/poor response on Afinitor/Aromasin. I still only have about half a glute muscle on one side, but that's what we are going to have to work with so be it.
Apparently they are on top of the warming, slow push, and will be laying face down here. A bit worried about the side effects, but I just did 3 months of a truly hellish drug and I'm rollin' with oxy these days, so hopefully any more bone and muscle pain will be well managed.
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I got my shots today. They always warm them up and I’ve bend over the exam table and just shift weight for each side. I was tired when I got there and after the shots I could not wait to get home and go to bed and I conked out for about an hour Tomorrow I’ll be totally useless. I’ll be in bed most of the day sleeping. That’s my side effect. No nothing else so that’s not too bad.
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Are there any alternatives to faslodex that can be taken with Verzenio, besides Tamoxifen and AI's? Verzenio and Fulvestrant seem to have been working for me and I don't want to stop either really, but I am getting more and more miserable with side effects and I'm narrowing it down to the fulvestrant. Doctor did lower the Verzenio dose and that helped. I've just got terrible musculoskeletal pain, fatigue, heartburn and digestive issues, "hormone headaches", low mood, not interested in anything, can't do much at all around the house or go out walking like before because I just hurt all over and almost collapse when I do. Any ideas, suggestions, or comments?
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