Faslodex Girls Thread
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just reporting on my MO visit and my stable scans. Thank you, faslodex. I was his healthiest patient all day.
All we really talked about was stopping the xgeva cause my jaw lit up on bone scan. Had one root canal monday and another 1 tomorrow. Some antibiotics and Dr and oral surgeon thinks it'll pass. I thought he might switch me to tamoxifen for a while. I should have asked. I think I will send a message about that.
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Hello, I just changed treatments and had my first Faslodex shots today. It will be paired with Piqray as I have the PIK3CA mutation. I have read through most of this lengthy thread and just want to give a big THANK YOU for all the great information everyone has provided over the years.
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Best of luck to you with Faslodex. It's been crazy easy for me.
Update on jaw. I never got the 2nd root canal it was the first endodontist I went to and she refused cause she hadnt gotten a letter of referral from oncologist. So back to first guy. He believes tooth 18 needs it more than tooth 29. Um yes, it's been a bit sore there too. So is that the kind of work that should be fine before starting xgeva? He says yes. Other dentist says no. I'm Going with yes. If this jaw heals I may well go back on xgeva tho maybe at a reduced rate. Jaw feeling much better since root canal 2 weeks ago.
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I'm also just popping in to say hello and thanks to everybody who has shared their experiences so far. I had my first Faslodex shot on December 8, which I had to look up because it feels like it was a month ago and not last week. I also got my first Zometa and Zolodex that day, and followed them all up with a thoracentesis to drain my pleural effusion again. I like to combine all my suffering into a single day.
And then I started Piqray this week. So far so good.I didn't notice any Faslodex side effects other than a mildly sore butt, though I was so sore from the thoracentesis it was hard to tell what else might be going on. I had no idea about the hot packs, long injection times, warming up the shot, and all the other things people mentioned here to help it go better. Next week I'll definitely pay attention to see how they do it! I also have no idea which of the injection sites they are using. It's just somewhere high on my butt....?
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I’m reading here too, and will have my first injections next week. Thanks to everyone on this thread for helping us newbies learn from your experiences
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Day 2 after my first Faslodex shots. The muscles are only mildly sore when I press on them but no discomfort when I don’t press on them. The shots were given high up sort of between my butt and hip, I would describe it as “on the corner”. Both shots were given at the same time with me standing over 30-60 seconds. I stood with my weight evenly on both feet and leaned slightly onto the counter while putting my weight onto my hands and concentrating on relaxing the butt muscles. The only thing I felt during the injection was the needle at the skin’s surface and I had no discomfort after the injection.
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I had my first set of shots today. Silly me thought I’d be in and out since the shots were pretty quick. There was a lot of waiting and more introductory stuff than I expected, including labs. Anyway, I had both shots at the same time, like ilowen. One of the nurses said her special trick was telling people to stand pigeon toed because you can’t tense your butt muscles in that position. We’ll see how the soreness is tomorrow.
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I'm going back tomorrow for my second set. I'll have to try to remember to stand pigeon toed!
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Well, I don't know if standing pigeon toed helped or not but neither shot hurt this time! Yay! Last time the second one did....ouch...
It also helped that the nurse this time was a very handsome, friendly fellow from the Caribbean with a beautiful island accent. I could have sat in there all day chatting with him. Lol.
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ParakeetsRule, it sounds like you had a good appointment all around! I’ll have to try the pigeon-toe. Anything that’ll help keep those muscles relaxed.
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I’m not sure if the pigeon toed feet did anything to help, but I didn’t have any serious pain with the shots. It was a new experience having the “perm solution” pee smell for a couple days. I even thought I smelled it on myself in bed the first night and asked DH and he laughed about the perm solution description and said, yes, it was there. (I believe I read that from someone on this thread.
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Rosie,
This just goes to show you how our MOs are either unaware or they don't want to know.
When I started faslodex (no longer on it) and had my first appointment afterwards, I told the MO and the NP that I had had the weirdest smelling pee for some days afterwards. They looked at each other and said -- wow -- that's the first time we've heard that -- with completely straight faces. They were both very experienced practitioners, so I know that was BS when they said it.
My question is why hide the ball? It is what it is. They made me feel like I was crazy.
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I told my oncology nurses that my pee smelled like diesel or some kind of petroleum product and they said that they never have heard of that. I believe them. I told them their other patients probably never said anything because they have better manners than to talk about their pee.
I lookedit up and from the inactive ingredients, you can see why it smells:
Each injection contains as inactive ingredients: 10% w/v Alcohol, USP, 10% w/v Benzyl Alcohol, NF, and 15% w/v Benzyl Benzoate, USP, as co-solvents, and made up to 100% w/v with Castor Oil, USP as a co-solvent and release rate modifier.
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Has anyone experienced numbness and tingling feeling on one side of the face? I noticed yesterday that the area under my right eye felt numb, and now the right side of my nose, and above my lip. I googled it and it could be a lot of things.
I have an appointment tomorrow with the MO so I will be sure to ask, but they typically say it’s unusual/ never heard of it. I’m also getting a CT scan tomorrow.
I just rode my bicycle and was breathing hard going uphill. Does anyone get so out of breath that they feel nauseous?
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GoKale,
Re: the facial numbness: Do you have a Primary Care Provider? These generalists have a wider grasp than oncologists of the everyday/weird ailments that can afflict us. Tell your MO, by all means, but I would expect him/her to be more knowledgeable abut SOB on exertion.
Tina
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Thanks, Tina.
I saw the MO after my CT scan. The CT scan showed fluid on my lungs which explains my shortness of breath and fatigue. I told him about the numbness on my face which concerned him for brain mets. So I got an MRI done on my head. Monday I will have the fluid drained off the lungs and it will be analyzed for cancer cells.
Next week I will get the results of both the MRI and lung fluid. Hopefully I will get a good new plan or maybe the green light to restart the same meds.
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GoKale,
Your MO sounds like he is paying attention. Getting test results and putting a a plan in place is a good way to start the new year.
I wish you all the best.
Tina
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I had my second set of shots yesterday and have a couple questions maybe someone can answer. My MO requested labs again and this time my liver enzymes really shot up. (AST and ALT I think). They’ve never been out of normal range until yesterday. I tried to read up on what high levels mean and generally it means damage to liver, one article mentioned alcohol, or a few specific otc pain relief meds, and a few other reasons. I rarely drink alcohol or take pain meds but I did both during our recent vacation week. Would that send my enzymes into space or could the Fulvestrant itself do that too? I scanned the previous pages of posts and did see a reference that it’s a very rare side effect.
Second, I had some new left hip pain last week and left lower back pain just today. Today the lower back pain was making me teary while sitting in the car. I’m trying to figure out if it’s the shots or just my own separate issue. A heating pad is helping a lot. Thanks for any ideas.
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Hi, Rosie24. I'm on Faslodex and Xeloda, so I'm not sure which, if any, caused it, but both of my liver enzymes were high last month for the first time. I have to say I did have alcohol just prior to the testing, so I have not had anything to drink since last week. I am going to see if that makes a difference. I can let you know what happens after my next visit, which is this Monday, the 10th. I usually get the results the next day.
I can't help with your second question. I have chronic low back and hip pain, but it worsens for me because I sit on a hard floor playing with my grandson all day a few days a week. I know exactly where mine is coming from.
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Thanks KBL, I bet playing on the floor with your grandson is the only good reason for getting on the floor! I have a virtual appt with my MO on Tues. I’ll be interested in what she says about the liver enzymes as well as what yours says too
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Rosie24, please keep me posted as well
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Rosie - I have not had a drop of alcohol since going on Ibrance/Faslodex/XGEVA so I can't help with the liver enzymes question. As far as the second part of your question, I am learning the hard way about side effects from the Faslodex shot. First off, I have been on Faslodex for about two years now. I am almost 58 years old and never had back pain that I can remember or any sciatic nerve pain issues. After being on Faslodex for a couple of months, it became harder and harder for me to do my walking and I was getting pain in my sciatic nerve and back pain all on my right side. I tried doing more stretches, etc. and it just kept getting worse. It eventually became debilitating and we did not know what was causing all of this but I was eventually suspecting that it could be the Faslodex. At that time, I was getting the Faslodex injections in the dorsogluteal site (right above your butt) and now I get them in the ventrolgluteal site (kind of on the side of your hip). I think that the original injection site caused my sciatic nerve problems and maybe some of the back issues. If you look at my MRI or scans, you can see that I have some degenerative issues in my back but they never bothered me before. I think that the Faslodex by blocking the estrogen in the body makes our joints stiff or hurt. My theory is that there may be areas of our body that did not bother us before but now that the lubricant in the joints is diminished now bother us so we are noticing new areas that hurt or other areas that hurt more than they did. I thought about asking my MO if I could go to a half dose but research I did shows that it is not as effective at a lower dose. I have made some accommodations to try to manage the pain and am happy to share with anyone else that is having issues.
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cowgal, the oral form is supposed to be coming out this year. Let’s all hope. I’ve only been on it since September 20th. I’ll take oral over injections. My fingers are crossed that it’s soon
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KBL - Are you sure that Faslodex will be available in oral form? I Googled that and couldn't find anything about it. I know I have read on this site that there will be oral SERDs available. Are you maybe thinking of them?
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I believe the oral SERD is an oral form that is similar to Faslodex. There is someone in my Zoom meetings on Monday who has been in a clinical trial of the oral SERD, which didn't have a name. I will ask her on Monday. I'm so new to Faslodex, I might be wrong. I'll let you know.
edited to add I did find this. It was from March of last year.0 -
Cowgal, Thanks for your response. It makes a lot of sense, in my case too. Bone scans have showed bilateral degenerative changes (arthritis acc to MO) in shoulders, hips, knees, and big toes. I haven’t been bothered by any of those until my recent hip pain. I also have back issues since before my bc diagnosis and I’ve been able to manage pretty well without the recommended fusion. So having the anti-hormonal age us even more regarding our bones and joints could explain things. I’m still on the every two weeks loading doses and am trying to track whether the pain follows a pattern in terms of days after the injections. So many here seem to have no (or very little) issue with Faslodex, I thought there must be another cause. Still watching & hoping hip and back settle down. Btw, I’m receiving at the ventrogluteal site, as written on my documents.
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Fanny Pack,
"Elacestrant" is the new SERD. I have been interested since first learning about it from my oncologist. I feel, as Cowgal does, that fulvestrant/Faslodex injections have exacerbated my arthritis, causing considerable pain in my back, hips and legs, and affecting my mobility.
This was published last month by the American Association of Cancer Research:
Elacestrant May Improve Outcomes for Patients Whose Metastatic Breast Cancers Progressed on Prior Endocrine Therapy
December 7, 2021Elacestrant is the first oral selective estrogen receptor degrader to show clinical benefit over standard of care in a phase III clinical trial for this patient population
SAN ANTONIO – The investigational oral selective estrogen receptor degrader (SERD) elacestrant significantly decreased the risk of death or disease progression and increased progression-free survival compared with standard-of-care endocrine therapy for postmenopausal patients with estrogen receptor (ER)-positive/HER2-negative metastatic breast cancers that progressed on prior endocrine and targeted therapies, according to results from the phase III EMERALD trial, which were presented at the San Antonio Breast Cancer Symposium, held December 7-10, 2021.
Patients with metastatic ER-positive breast cancer are typically treated with endocrine therapy, such as aromatase inhibitors or fulvestrant (Faslodex); however, resistance to these treatments commonly develops, in some cases due to mutation of the ESR1 gene. Fulvestrant, which is delivered through intramuscular injections, is currently the only SERD approved for patients with breast cancer.
"There is an urgent unmet need for alternative SERDs that are effective against ER-positive metastatic breast cancer, including those with ESR1 mutations," said Aditya Bardia, MD, MPH, director of the breast cancer research program at Mass General Cancer Center, and associate professor at Harvard Medical School.
Elacestrant is an investigational SERD that, unlike fulvestrant, is administered orally. Bardia explained that elacestrant has greater absorption, improved pharmokinetics, and enhanced inhibition of ER compared with fulvestrant. In addition, elacestrant has demonstrated greater antitumor activity in mouse xenograft models of ER-positive breast cancer. A phase I clinical trial found that elacestrant treatment had an acceptable safety profile and led to responses in heavily pretreated postmenopausal patients with ER-positive/HER2-negative metastatic breast cancer.
To understand how elacestrant compares to the current standard –of care, Bardia and colleagues initiated the phase III EMERALD trial, making elacestrant the first oral SERD to be studied in a randomized phase III clinical trial.
The trial enrolled 477 postmenopausal patients with ER-positive/HER2-negative metastatic breast cancer who had received one or two prior lines of endocrine therapy without chemotherapy in the metastatic setting, and who had progressed on prior treatment with a CDK4/6 inhibitor. Patients were randomly assigned to receive either elacestrant or standard of care (investigator's choice of fulvestrant or an aromatase inhibitor). Among the enrolled patients, 228 had tumors with mutated ESR1 (115 in elacestrant arm and 113 in standard-of-care arm).
Bardia and colleagues found that patients in the elacestrant arm had a 30 percent lower risk of death or disease progression compared with those in the standard-of-care arm. Among patients whose tumors had ESR1 mutations, those in the elacestrant arm had a 45 percent reduced risk of death or disease progression. Subgroup analyses showed that elacestrant improved outcomes regardless of the presence of visceral metastases, the number of prior lines of therapy, pretreatment with fulvestrant, or geographic region.
At 12 months, patients in the elacestrant arm had a significantly higher rate of progression-free survival than those who received the standard of care (22.32 percent vs. 9.42). Among patients with ESR1-mutated tumors, 26.76 percent of those treated with elacestrant had progression-free survival at 12 months compared with 8.19 percent of patients treated with standard of care. An interim analysis of overall survival showed a trend in favor of elacestrant, including in patients with ESR1-mutated tumors, according to Bardia.
Certain grade 1 or 2 treatment-related adverse events were more common among patients treated with elacestrant compared with standard of care, including nausea (25.3 percent vs. 8.7 percent), vomiting (11 percent vs. 2.6 percent), and fatigue (11 percent vs 7.9 percent). Grade 3 or higher treatment-related adverse events were observed among 7.2 percent of patients in the elacestrant arm and 3.1 percent of those in the standard-of-care arm. There were no treatment-related deaths in either arm.
"Elacestrant is the first oral SERD to demonstrate a statistically significant and clinically meaningful improvement of progression-free survival in patients with ER-positive/HER2-negative metastatic breast cancer in the second- and third-line settings, including for patients whose tumors harbor ESR1 mutations," said Bardia. "Elacestrant was well tolerated with manageable and reversible side effects. This therapy has the potential to become the new standard of care for patients with this cancer."
Bardia noted that future studies will aim to understand the efficacy of elacestrant during earlier lines of treatment and in combination with other therapies. A planned phase II trial will examine the impact of elacestrant in combination with abemaciclib specifically for patients with brain metastases.
A limitation of this study was that all enrolled patients had received prior treatment with a CDK4/6 inhibitor; thus, the efficacy of elacestrant in patients without prior CDK4/6 inhibitor treatment remains unknown.
The study was supported by Radius Health. Bardia has served as a consultant or on an advisory board for Radius Health, Pfizer, Novartis, Genentech, Merck, Immunomedics/Gilead Sciences, Sanofi, Daiichi Sankyo/Astra Zeneca, Phillips, Eli Lilly and Company, and Foundation Medicine. He has conducted contracted research or received grants from Genentech, Novartis, Pfizer, Merck, Sanofi, Radius Health, Immunomedics/Gilead, Daiichi Sankyo/Astra Zeneca, Natera Inc., and Eli Lilly and Company.
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I wonder if in order to go to the oral SERD that Faslodex has to fail us. Then there is also cost and insurance. Will our insurance allow us to switch if Faslodex appears to be working and it is less expensive? I am assuming that the oral SERD may be really expensive until it is around long enough to go generic.
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Oral sure would be nice though. No more butt shots? Sign me up!!
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I've been noticing lately that swallowing feels different, like it's just a teeny bit harder than before. "Trouble swallowing" is a listed side effect of Faslodex so I'm wondering if that's what's happening? Has anybody else had swallowing issues?
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