Elacestrant (ORSERDU)
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Weninwi, I hope it’s not progression. I saw on the Facebook post that it takes a while for Orserdu to kick in. I’m only on day three. I really hope you can get answers.
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Weninwi- the gall bladder is also there and could cause that kind of pain.
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After six weeks of Orserdu, my tumor markers went from low fifties to a hundred and now they're sitting at just under 800. I have compression fractures in my upper and lower spine and in my hips. New spot on my lung and multiple new liver lesions. My MO doesn't think this treatment is working and wants to put me back on Doxil, which was so hard on me that I quit after one infusion.
We are compromising with some radiation. I'll get my spine and hips radiated to see if that helps with pain, and then I'll consider going back on chemo. I have a nuclear bone scan coming up in mid November.
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ninetwelve,
Sorry to hear that Orserdu did not work for you. I may be following you. I started Elacestrant Aug 24, so I'm on my 3rd bottle. I have a bone scan 11/02 as I've started to have new bone pain in spine and elsewhere. I've never had bone pain before this. And have never had radiation for bone pain. Did you have a lot of pain with the compression fracture? Are they recommending any treatment to stabilize the vertebra? I hope your next treatment is effective.
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Hi, Wen. The spine and hip pain is somewhere around a six, when I move in certain ways. I don't have pain while sitting, just if I move in a way that transfers weight to the area of one of the sore spots. The only thing that will stop the bone degradation is an effective cancer treatment, because that will stop the cancer from growing in the bones and weakening them.
I'm trying not to be devastated at the new developments. I made a dentist appointment to finally go get my teeth cleaned today, while waiting for the radiation dept. to finish their calculations for my five sessions. Rads start in two more days. I'm glad it's not a whole month this time.
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ninetwelve,
I hope your radiology treatments go well. Comments I read on this site about radiation to bone lesions seem to be mostly positive. Funny how going to the dentist for a cleaning can become a life stabilizer, but I know what you're saying. I'll keep you in my thoughts and prayers.
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Thank you, wen. I got some good news at the dentist, or at least, some "not bad" news. I don't need any fillings or dental work. I get my first rads tomorrow, and next week I'll meet with my MO and we'll sign up for some more Zometa for my bones, and maybe a chemo, if I am brave enough to try again. Like The Eagles said so long ago, "Put me on a highway, show me a sign. Take it to the limit. One more time."
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I'm two weeks into bottle #3. I had a bone scan today at the urging of my MO because I've developed bone pain in the pelvis and spine. I've never had bone pain before so this is new. The scan showed mild progression in three areas and significant progression in one area where I'm having pain. I have a Chest and Abd CT in 2 weeks at the 90 day mark of treatment. If it shows progression I know I will off Orserdu. If it shows stable or improvement I have no idea what the decision will be. I have never had radiation to bone lesions, but my MO had mentioned this as a possibility in the past for bone pain specifically.
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weninwi- Hoping its just some bone mets; and if you do consider getting spot rads for a few stubborn bone mets, a recent report says doing this increases overall survival, so its a great idea. Imagine if one of those spots was a triple negative cancer starting to grow? or anything resistant to endocrine therapy, best to get rid of it, as you say.
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On the Ordersu Facebook site, more women are reporting significant progression w/i first 3 months. Scans of different types (CT, Pet, etc) are done around the 3 month mark. They describe progression that is significant in liver, lungs, nodes, One woman said her oncologist is no longer recommending the drug for his patients given what he is seeing. Many of the women were very hopeful for this new drug and felt physically good while on it, so the progression is a shock. Some feel this drug has been over hyped. In the Emerald study around 45% had a good response, so, of course, that means 55% did not. I wonder if Orserdu would be more effective for more women if it was paired with a second drug, but that has not yet been approved. Overall, pretty discouraging to me.
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I'm still on the Orserdu, and have a nuclear bone scan scheduled for next week. Pretty sure my MO is going to tell me it's not working. I looked up statistics on the success rate of chemo and found this interesting point:
- Response rates vary significantly (e.g. 15-70%) based on disease type and the systemic agent being utilized. The range of median duration of response varies too (e.g. 2-15 months).
But with anti-hormonals there is the problem that not all cancer cells need hormones to replicate. I think my cancer might have been too pretreated to be vulnerable to this new medication.
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I've got 11 days left on my 3rd bottle of Orserdu. I had bone scan Nov 2 that showed "significant" progression in left pubic bone (illium) and "milder" progression in L3, T6, T7. Other multiple boney areas unchanged. Had CT of Chest & Abd yesterday Nov 7 that showed new 2mm left lower lobe lung nodule indeterminate, but likely benign. Abd CT showed multiple hepatic lesions similar in size and mildly decreased in enhancement. The largest lesion in the dome slightly decreased in size from 3.8 x 3.4 cm down to 2.8 x 2.3 cm. Also noted on CT was increase size 0.6 cm of right iliac wing blastic lesion.
To me this means "mixed results", something quite a few other women have reported on the Orserdu Facebook site. I've started to have bone pain continuous in the spine - not severe, but continuous, whereas before it had been intermittent. I'm concerned about compression fractures.
Update: Talked by phone with my MO today. She says bone changes are mild and not convincing of progressive disease, and over all, liver appears stable to somewhat decreased. I asked about radiation treatment for bone lesions and she said she would refer me to an oncology radiologist to discuss. I’m to continue Orserdu.
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Today is my last day in radiation for the two places in my spine and the one on my hip. I stopped taking Orserdu a few days ago, and my pain is already much less than before. Because they are zapping next to my stomach I've had some nausea from it. The radiologist said to take a compazine an hour before rads to help with that.
Very frustrated with my cancer center as the schedulers and the ordering physicians don't seem to communicate. I've tried four times to get on my MO's schedule for this month so we can talk about my nuclear bone scan on the 17th. No matter how many times I tell that sweet little gal on the phone that I need to see my doc after the 17th, she keeps offering me dates before then. Is my doctor telling her "just squeeze in the office visit wherever you can" and I don't know it? Who can say.
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ninetwelve,
Thanks for the update. Maybe I'm not following correctly…but did you stop Orserdu on your doctor's order, even before your bone scan…..or because you ran out of medication or decided on your own to stop? Sounds like the radiation to your bones has been effective, or do you attribute less bone pain to stopping the Orserdu? My MO agreed to refer me to an oncology radiologist to discuss treatment for new bone mets, but she wasn't particularly encouraging, and emphasized more the risks than the benefits. When you first met the radiologist did you look at your scans together and discuss his/her interpretation of the bone changes…..before then discussing the treatment approach, risks and plan?
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I stopped the Orserdu on my own because of the extra pain it was causing me, at a time when I was already in more pain than I'm used to. I'm awfully close to quitting all treatments, so I don't know how useful my treatment story is for others.
The radiologist is wonderful and we did go over my scans. My cancer is on the right side, so there is less risk to heart, and that may be why my MO did not mind referring me to Radiology. The rads are just palliative and meant to help with pain. I do have some nausea from the rads.
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ninetwelve,
I'm sorry Orserdu doesn't seem to have worked out for you. When I started to have new bone pain in my second month on the drug, the NP I saw reminded me muscular skeletal pain is listed as a side effect. Thankfully my bone pain has not worsened and is now less. I did get an appt with a radiology oncologist to discuss possible treatment of the bone progression, and your statement that such treatment is palliative was a good reminder. I hope you come up with a new treatment plan that gives you comfort and hope.
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Yes, that's it. The radiologist and MO were both clear that chemotherapies/targeted therapies have the best chance of destroying the cancer in my bones and keep new cancer from forming. The rads I got will help with the damaged areas and maybe permit some healing, which will make my back, hips and ribcage more mobile and less painful.
My MO wants me to retry the Doxil that I had such a hard time with back in June. I think I can give it one more shot. But I'm afraid this time. This time I don't feel brave.
edit: Last night I was crying in pain, and I usually ignore mild to medium pain. Maybe it's time for a referral pain management specialist. It's easier to be brave when you're not hurting.
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ninetwelve,
I just finished my interview with a nurse at Onco360, the specialty pharmacy that distributes my Orserdu. She said they have seen that Claritin (OTC allergy med) helps reduce bone pain due to Orserdu. They do not understand how/why. Maybe not helpful to your situation, but thought I would share. Yes, a referral for pain management certainly seems needed. Pain saps all reserves both physical and mental. I hope and pray you find relief and that a second try on Doxil goes better for you.
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I had completely forgotten about Claritin! Last night I was wondering why I had some, since I usually take Benadryl for allergies. I just talked to customer service at Stemline, too, and she didn't mention the Claritin when I asked if other patients had joint and muscle pain. I'll give it a shot. Thanks, Wen!
In the meantime, I get a little break from cancer club as I'm all done with my radiation and don't have to go back for a whole week. Next bone scan on the 17th, and I see my oncologist on the 22nd to discuss next steps.
(Cancer Club is what my family calls the cancer center I go to. It's on Country Club Road, so that contributed to the name.)
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ninetwelve, I hope your pain is subsiding for you.
@weninwi I have a question for you since I know you’re knowledgeable about Orserdu. I’ve just finished my first month. Bloodwork looks pretty decent. I was expecting tumor markers to rise more since people say they do. Most people panic when they shoot up on this drug. Now I’m wondering since mine didn’t, is the drug working? I was off treatment for two months before, so I’m hoping it is. Tumor markers are one of the only ways I can monitor my cancer, so not to have the reliability of them right now is a tad uncomfortable.
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Hi kbl,
I've never had tumor markers done, so don't have personal experience to share. I'm aware that many women in the FB group report a rise in tumor markers after starting treatment, but I think I've read a few exceptions to this experience too. The explanation given by the moderator for at least some rise in markers is that the blood test sees both dead and live cells. That makes sense to me. However, those women who report a dramatic rise seem to be those who then report significant progression on scans.
Since you have not seen any rise, I'd be more likely to think the drug has not yet started having an effect on the cancer. The FB moderator often says Orserdu works "slowly". That's why she says not to scan sooner than 90 days.
You've probably read that many women in the FB group report bone pain where their bone mets are located. This has also been my experience. I had absolutely no symptoms first month - felt good. But during the second month I started having mild, intermittent bone pain, and also RUQ pain, and H/A. I've not had bone pain nor liver pain before, even when I've had progression. Was the drug now "working on" my liver and bone mets? The pain persisted for the entire 2nd month and into bottle #3. I've got 3 days left of bottle #3 and most of the pain has now resolved. I had my scans about 14 days early of the 90 day mark (because of my pain complaints) and the results were mixed - some shrinkage, some stable, some mild progression, some significant progression. Did the drug not start working on the cancer until the second month? That's what I'm inclined to think. My MO has said to continue on Orserdu.
I think your second bottle may tell you more…..both in terms of tumor marker changes and any symptoms. Thankfully I didn't need much for the pain (took Ibuprofen, Tylenol, and tramadol once). If I were to develop bone pain again I think I will try Claritin (suggested by Onco360 specialty pharmacy nurse). This Onco360 nurse told me she is hearing good reports from patients re their response to treatment.
I'm scheduled for a MRI of the brain because of the H/A symptoms, but now that the H/A has mostly resolved, I'm torn about canceling. It's an expensive test (I don't want to be wasteful), and I'm no longer sure it's justifiable, but I also don't want to miss early evidence of brain mets or eye mets. I don't like having my fears and uncertainties control my thinking and decision making.
Hope bottle #2 goes well for you. Keep us posted here with an occasional update.
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@weninwi Thank you so much. I have had to rely a lot on my tumor markers because imaging has never been my friend. I’m glad your pain has resolved. I totally understand second-guessing the brain MRI, but you probably should get it or you’ll always wonder. I’ll keep you posted on the second bottle.
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Update:
Had CT of chest & abd, and bone scan about 2 weeks prior to the 3 month mark…due to c/o pain. Abdominal scan showed "less enhancement" in many lesions and largest lesion is slightly smaller 3.5 cm to 2.8 cm according to radiologist, but my oncologist isn't convinced of the smaller size (says liver lesions are hard to measure). Nothing concerning in the chest. The bone scan showed no new lesions, many lesions unchanged or stable, two lesions with mild progression, and one lesion in left pelvic bone along coccyx with significant progression, but my oncologist is not convinced the progression is significant. She considers me stable and I'm to stay on Orserdu. I don't know what to think about my oncologist disagreeing with what the radiologist says. Certainly doesn't add to my confidence. The other thing that worries me is that the left pelvic area is where I have pain. The pain is mild and intermittent, but persists. I saw a radiation oncologist who says she would treat the pelvic area with external radiation, but only if and when the pain becomes constant and more severe. I also just had a brain scan yesterday for c/o H/A and results were "normal". I'm to stay on Orserdu and have started bottle #4. My next CT scans (not bone scan) are early Feb. The uncertainties about the scans are a weight on my mind.
On the Orserdu Facebook site one woman recently reported progression in bones and liver after 6 months and another woman reported progression in bones after 8 months. Both are moving on to some kind of chemo.
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@weninwi just for thought , ask your Onco about taking another CDK4/6 because If I remember correctly, @intolight took Ibrance, then Xeloda, then Afinitor, and now she’s on Verzenio.
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I only recently became aware that fiber, I think mostly soluble fiber, can affect the absorption of oral meds including cancer meds. The drug insert that comes with Elacestrant says absorption is greatest when taken with a high fat meal of 800-1000 cals. My breakfast qualifies for that so that's when I've been taking it. But I also add chia seeds to my breakfast yogurt and chia is a soluble fiber. I started to wonder if the chia might affect absorption. A pharmacist at Onco360, the specialty pharmacy that supplies my medication, says chia is not listed as affecting absorption. But just to be on the cautious side, I've decided to stop adding chia to my morning yogurt and will add it to kefir with my lunch or supper.
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@weninwi me again. I’m one pill shy of finishing bottle #2. I was on doxycycline for two weeks per my urologist, and I started having trouble breathing. I just felt like something was pressing on my diaphragm. Had my onc appointment this past Tuesday. He said he didn’t see any reason for me to be on the doxy and told me that could be the reason. I stopped taking it. My breathing has felt a little better. I’m thinking it was making my GERD worse and that’s why.
Anyway, I woke up at 2:30 this morning with some pressure in the middle of my chest. That feels better and I’m now having back pain where I’ve never had it before. It’s right in between my shoulder blades. Like you, I usually have pain in my lower back and have never felt this pain before. It really hurts and is making it hard to breathe, but it’s because of the pain. I’m wondering if the Orserdu is having the same effect on me and making my bones hurt worse and that it will get better, as yours did. This stuff is strange.
The other thing is my bloodwork is the best it’s been in a really long time. My WBC was 6.4. I haven’t seen that since I started treatment. After reading, I’m wondering if the doxycycline had something to do with that, so I’ll have to wait until my next visit. My tumor markers also came down this month.
I wish when numbers got better that we felt better to go along with it.
I hope you’re doing well.
Did you have pain between your shoulder blades?
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Hi kbl,
Good sign that your tumor markers have come down!
I'm on bottle #4 with no pain right now. I keep track of pain/no pain with a simple daily diary so I can watch for patterns.
During bottle #2 and #3, I did develop pain between my shoulder blades. I thought it was my spine mets or a threatening compression fracture, but the location of the pain didn't line up with the lesions on my bone scan. So I decided the pain was likely muscular…..due to poor posture or misalignment and general decline in muscle tone. The mid back pain has mostly resolved and I do simple exercises to work those back muscles. I don't have any pain at the location of my lower spine mets.
On bottle #2 and #3 I also developed pelvic bone pain (I have mets at both sacral illiac joints), but that pain also has resolved. And I developed upper right quadrant pain where the liver is (I have mets), but that pain has resolved too.
My cholesterol went up slightly, but otherwise like you my labs have been good. My next labs are next week. I don't know what to think about this drug. It's been fairly easy to tolerate, but is it working?
My Mayo second-opinion oncologist has told me more than once that the median PFS is 4 months (actually 3.8 months). But I have also read that women who have been on a CDK4/6 for 12 months or longer have gotten up to 8 months. At least that's how I remember it. My next scans are at 6 months and I hope and pray the cancer hasn't gone crazy by then.
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@weninwi Thank you. I’ll keep a journal for the pain starting today. This pain between the shoulder blades is odd because I haven’t had it before. I will definitely keep an eye and let you know if it’s anything other than just the pill doing its thing after bottle 2.
I don’t know about you, but the four and eight months to me don’t seem like something to get excited about. We sure know how fast that time can go.
I hope your bloodwork is still good. I’ll keep an eye out for your posts in the FB group as well.
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kbl,
I watched a couple of the YouTube presentations on Elacestrant. I find it very confusing when Progression Free Survival (PRS) deals with Time i.e. Months and when it deals with Rate %. In my estimation, neither of these measures are stand outs for this drug. The one point that I did get a bit clearer on is that failure in the first three months indicates "estrogen resistance". I wish there was someone with an understanding of interpreting studies who could explain the outcome results in simple language. There is just so much/too much patient confusion and uncertainty about this drug.
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