Elacestrant (ORSERDU)
Comments
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intolight…I think I remember you when we were on Ibrance quite a few years ago….sorry you are having so many problems….bless you as the days go by for you
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@intolight How is it going? Still better, I hope.
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Kbl, I am doing okay, thanks for asking. I saw my oncologist today. My labs still show declining tumor markers and the rest look good too. I will scan in six weeks. She asked how I was doing, and I told her I just had stomach issues and a headache for about an hour or two right after I take the med, but then it goes away. She was surprised. She said her other patients don't tolerate it that well. I have other little pains, etc., but basically I am tolerating it better than some of the other meds I have been on. I am in my fifth cycle of Orserdu.
How are you doing? I think of you and pray for you every night. I hope hospice is treating you well and that you are not having much pain. I lost two good friends from cancer this week—both were men. One was from pancreatic cancer and the other multiple myeloma. My DH is having a prostate MRI and biopsy next month, but the doctor said his numbers were not very high and he thinks he will be okay. All of these things concern me, but I am hanging on.
Take care of yourself. Thank you for dropping in. Let me know how you are doing.
Love, Chris
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airlinegal, I responded to you while I was at the doctor's office but lost the post, so I will repeat some of it. Yes, I was on Ibrance for four years and I do remember you. I have been on oral meds for over nine years, and have since moved on past several others to now Orserdu. This may be my last oral med that is supposed to work for me. I have not decided whether I will accept IV chemo. I am tired and may allow things to take their course.
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Results from my scan today said I am stable. I've been on Orserdu for six months so I will keep on…
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Anyone else have abdominal pain? My stomach has hurt for a week now. I am thinking it is the Orserdu. I don't see my onc for three more weeks but I am wondering whether I should call. Nothing showed up on my recent scan.
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Hi all,
New here…..started Orserdu about 2.5 months ago. Doing well with little side effects.
I am ESRU1 mutation, and did not tolerate Kisquali & Verzenio.
Saw by wonderful oncology team yesterday, and am so thankful everyday for such wonderful care. I told them, "I see this cancer treatment is almost like an 'art form'". What to take, when, the continual dance of it all. When to intervene and when not to.
I was initially dx in 2003. ILC (I found it). Double mastectomy ( in situ in other breast). AC & tamoxifen.
Fast forward, October 2023….in a car accident. Fractured sternum on CT scan. Went home, read COMPLETE report next day. Last sentence, Intermittent scherlotic bone metastatic cancer. NO ONE told me. If I would not have know the meaning, I would be just cruising along. I believe everyone is free to choose their beliefs, but I gotta tell you ladies the Holy Spirit was ALL OVER this one. I also developed two pulmonary embolisms after accident and drove myself to hospital. The doctor told me "I got chills when I read your file". Thank you Jesus
Kisquali & Verzenio sent liver enzymes through the roof. ESRU 1 mutation, so now on Orserdu.
Thanks for reading & listening. Hugs to all, C
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Hi, I am new here as well. Just started Orserdeu about 2 weeks ago. So far just lots of fatigue.
Taking a down day today. It is a beautiful day in the Pacific Northwest.
I also have a new grandbaby due this week. Number 3 and this one is a girl!
Hope everyone is managing well and finds some enjoyment and heart opening.
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Hi cgs19 and perky2020. Fatigue seems to be a constant with any of these drugs. I just started month 7 of Orserdu. I have been having a headache for almost a week now. I had a brain MRI a couple of months ago that came back clear so I have no fear of brain mets. I can tell where the pain comes from—it is like a tight fitting cap on top of my head. I will see my oncologist later today for a regular checkup so I will ask, but I am wondering if anyone else has headaches with this med.
Fall is coming to the Rockies as our trees are starting to turn already. I do like fall here and will enjoy every day.
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Hi IntoLight,
I've been on Orserdu for 13 months, and do not have headaches… Hope you find the cause, and/or a quick fix- can it be summer heat?
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@cure-ious I have asked myself that very question. Is it the summer heat? Or a sinus something? or dehydration? Something else? I have not gotten hot, I took an antihistomine, and I have increased my water intake although I drink water constantly. I saw my MO today and she is concerned something has changed since my last brain MRI six months ago, so she ordered another one although on her examination today nothing seemed off. So Thursday night I will be scanned again. I really don't think that is the issue, but she is very thorough and I appreciate her checking. Thanks for responding.
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Well, my tumor markers continue to rise so my MO has moved my scan up to the next couple of weeks so we can see what is going on. I had a feeling…
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My scan results are in, and my liver tumors have improved and everything else is quiet (don't show up.) So, hoorah for Orserdu! My tumor marker rose but the scan is stable. So keep hanging in there!
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IntoLight- Excellent!!!! Dang, it is always such a relief to get a clear scan… if the TMs are still an issue it can be a good time to get a Guardant/genomic test to see if other mutations are arising, like PIK3CA, and consider if there is something else you can add to Orserdu. Its a great drug
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@cure-ious I had genomic testing nine months ago which is how we found the ESRI mutation. There were no other mutations present. You are so much smarter about these things than I, but I don't understand how more testing will help. I feel like we have about as much knowledge as possible and am not sure I want to add more meds to add more side effects. I struggle enough.
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IntoLight, Some mutations, like PIK3CA, are not there from the start but can appear when the cancer starts to resist the anti-estrogen treatments, and there is a trial now testing whether the overall outcome might be better if they use genomic testing to look for the mutation and treat it before the scans show any signs of progression (esp because TMs can rise six months or more before scans show anything). But then again, TMs can jump around and not mean anything, so I just bring testing in case the TMs in the future become an issue of concern…
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@cure-ious I just had the testing nine months ago, with a more complete one two months ago, so I am current. I don't have the PIK3CA mutation, or any other one currently known. Of course, they know there are more mutations out there but just not known yet. I am hoping another med pops up for when this one fails as I have about gone through all known for my specific condition (five so far.) I know you are always current with the research and I value your opinion. Thank you.
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My tumor markers went down (only one point, but I will take it). Over did yesterday, and feeling the love pain in my back. It reminds me of back labor 45 years ago. I took the oxycondone 325 twice yesterday. Anything else you ladies do? Whole Foods is doing Thanksgiving for me. Delightful. This fatigue $#,+ is really crazy. Hugs, C
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cgs19 Glad to hear your markers went down, even though minimal. At this point, it is a good thing! Sorry you are hurting though. Hope you can enjoy a good Thanksgiving meal.
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Really weird…my tumor markers continue to climb even though the scan I just had showed the lesions in my liver are shrinking or are gone and the ones on my bones are not active and haven't been for many months. I'll accept the scan info. Tumor markers for me have never been too reliable. My first MO didn't use them at all. My brain scan showed no metastatic activity at all. I guess at this point we just wait to see if something happens. I haven't heard from my MO yet although her PA responded that my other labs looked stable. My TMs weren't in yet when she messaged me.
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Hi IntoLight, Its also not uncommon for TMs to start going up for six months or more before scans show anything. If its a consistent or large rise, you could ask for some genomic testing, so that if the cancer has developed any new mutations you'll have time to investigate options for the next step before the scans indicate any progression
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@cure-ious My PET results show Interval progression of disease with increased number of metastatic liver lesions and osseous metastatic lesions. Sounds like I will be making a change. I have not heard back from onc yet…
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@cure-ious Some progression on my bones was found in late August through an MRI for my hip. The tumors did not show up on the bone scan or CT scan. I had a guardant test done and now show an ESR1 mutation. My oncologist is suggesting Orserdu plus a CDK 4/6 inhibitor-probably Kisqali. What do you think of the combination approach? I appreciate your thoughts. She's ordering Orserdu right away. I'm having a new CT scan and bone scan in early January. For now the plan is to stay on Ibrance and Orserdu if my insurance and pharmacy will approve.
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IntoLight, Well, 9 months is a good response to Enhertu! Hopefully they are doing new genomic testing to look especially for a PIK3CA or AKT1 mutation? There are good targeted drugs for that now in clinical trial, and Lilly just put the PIK3CA mutation-specific drug STX-478 straight from phase one to phase three, and are clearly pushing hard on that as the competitor drug RLTY-2608 is also now in phase three with a bunch of other sister drugs coming up in earlier phase trials.
But, in addition, Orserdu is weaker than some of the other oral SERDs, like Imlunestrant or Girdestrant- those I think are sitting with the FDA awaiting approval. And, as mentioned below, there are combinations of these drugs with CDK4,6 inhibitors that could be tried. Please let us know how the next meeting goes!
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Chicagoan, You are so so so lucky to have such remarkable responses to your treatments! I was diagnosed July 2015 but with much bumpier progressions and can't fathom being on an AI as long as you have- with the whole panoply of drug options still ahead of you, its just so great..
The reports are saying combining the new SERDs with CDK4,6i, +/- PIK3CA inhibitors, are giving really long durable response times, so of course your MO is right about that. They are usually going w/Kisquali now because its the one that has shown the best overall survival advantage, but it could be a problem for those with heart issues like a delay in the EKG scan, but they test for that. And Kisquali is more specific for CDK4 so it doesn't give the intestinal cramping and diarrhea that they see with Versenio.
And now there are trials combining the PIK3CA mutant-specific drugs cancer trials with oral SERDs and any CDK4,6i; like Lilly has phase 3 with Imlunestrant for anti-estrogen and the STX-478 PIK3CA inhibitor plus any of the 3 CDKinhibitors.. and they are seeing great responses from them as well.
So in principle you could be on a CDK4,6i for a long time. I developed neuropathy on Ibrance and had to switch to Verzenio, and later learned that the CDKinhibitors can deplete you of Vitamins D and B12, and that a loss of B12 can be enough to develop neuropathy, so I would probably take both of those supplements. You could also monitor in bloodwork but some reports I read indicated bloodwork might look fine but you could still be deficient in periperal areas (feet and hands) so maybe just make sure you get a regular supply of those guys… I got the neuropathy acutely, when I went back on Ibrance after being off it for 2 weeks recovering from a shoulder arthroscopy, so it could have been the combination of Ibrance with the anasthesia or other drugs they give you in recovery- and it still could have been that combination really depleted Vit D or B12 to the dangerous level. I still was able to tolerate Verzenio and the neuropathy is almost all gone, but its taken years, you don't want it.
Best of luck, post often, your timeline is such an inspiration!!!
PS Was is an option to radiate the mets in the hip? After a year and a half on Ibrance-Femara I got some limited progression in hip and one spot on spine and they radiated that and I was able to go another year and a half…
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@cure-ious Thank you so much for your response. I was feeling skeptical about combining Kisquali and Orserdu but it looks like it is a good idea. We'll see what my insurance company allows. She was hoping to get me on Imlunestrant-I think it just got approved? but thought it would be easier to get Orserdu approved.
I have had issues with neuropathy in my left foot ever since I broke my leg in 2022. I do take B12 and Vitamin D supplements daily but maybe I should up the dose. It's not terrible but I often have some numbness in my left foot.
I had a radiation consult but since I just had hip replacement surgery 10 weeks ago and currently have no pain, the radiologist recommended that I stick to systematic treatment and then come back if the pain returns in my hip/thigh area. I was hoping to keep stretching out Ibrance but the MRI also found mets in the sacral area. I'll have CT/Bone scans in a few weeks and see if the cancer has been growing fast or not.
Thank you so much for your advice-I feel much more encouraged now.
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Orserdu has failed me. Many liver Mets have popped up. The recommendation is IV chemo. I'll try it, but if it is bad for me, I'll stop. Local treatments aren't an option...I saw the scan.
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intolightI
I'm so sorry to hear about your liver metastases. In 2023, an MRI revealed my liver was riddled with small metastases, and I had to quickly begin intravenous chemotherapy with Taxol and Carboplatin for 6 months. I was very apprehensive about these treatments, but thanks to a fantastic care team, I got through it and my metastases disappeared.
Keep hope alive. You still have treatment options available to you (as my oncologist regularly tells me).😊 Good luck for what's to come.
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@soldanella Thank you. I really needed to hear this.
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Chicagoan, Also, in case you develop a PIk3CA mutation, there are encouraging reports coming out of trials of adding CDK4,6i to oral SERDs and the mutation-specific PIK3CA drugs like RLY-2608…
Also, for neuropathy, I can personally vouch for trying Jardiance, a diabetes drug (prescription) that reduces blood sugar. My MO was OK with me trying it (I don't have diabetes) so long as I check for my blood sugar levels are not too low (they never have been). Its been reported to be very effective for diabetes-induced neuropathy, taken with vitamin D, and wow its the best thing I've tried, my neuropathy is just a bit left in one foot and it was very bad (I got it from Ibrance and drugs they gave me for shoulder arthroscopy). So, maybe sugar exacerbates both diabetes-induced neuropathy and drug-induced neuropathy in the same way?
Conclusion: The results indicated that empagliflozin (Jardiance) with vitamin D supplementation significantly controlled or reduced HbA1C and improved diabetic neuropathic symptoms in patients. It is suggested that this combination can be considered as the primary therapeutic approach for neuropathic complications in diabetic patients.
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